I like “no drama,” really I do. At the beginning of this month, I received my third round of Rituxan infusions. I was really looking forward to treatment.
My wrists and fingers had begun flaring in January and weren’t letting up substantially. My toes were tender and very “ouchy.” And, I could no longer stretch my palms/fingers to reach an octave at the piano. Now THAT was the final straw, what with rehearsals and performances coming up.
It was time for re-treatment. The positive effect of the previous round of infusions from last summer were sustained for about eight months. An improvement over the first round’s effectiveness of five months. I’d be thrilled if this round lasted for one year. How cool would that be?
Not only was I looking forward to treatment itself, I was anxious to try out a different hospital’s outpatient infusion center. My experience at the previous location was rather negative and I basically refuse to go back there. I had high hopes that this time would be different and go smooth as silk.
Read this post in its entirety:
What Does It Take to Feel "Cared For" by Medical Professionals?
Wednesday, March 30, 2011
Sunday, March 27, 2011
So Very Sleepy
What happened?! It snowed last night. It's cold (in the thirties/forties) and gray outside. What happened to spring which was beginning to be sprung? I feel like hibernating again.
Actually, I've become very, very sleepy in the past few days. I've actually taken some serious naps. Well, Friday, I think that I was actually running a fever which would explain why my body felt very shaky and weak. After dinner, I came home and slept for about 3 hours before watching a little TV and getting a full night's sleep still.
Yesterday, I felt asleep in my recliner for several hours. Not so sure what happened to the day but it didn't involve any writing. And today, I'm fighting the urge to go to asleep (again).
Earlier today I rehearsed with a student who is preparing for Solo Festival performance next Saturday. Last Thursday I rehearsed with four students (not my own) who are performing. Actually I'm accompanying about a dozen students next Saturday and an equal amount in another Solo Festival event a couple of weeks later. That's a lot of extra work including physical, mental, and motivational preparations.
Lots of piano practice too. Thankfully my hands have been feeling rather good after recent Rituxan infusions. Man, I am lucky that this treatment works for me. I am getting lots of use out of my hands.
Perhaps I need to relocate my samples/prescription of Provigil or Nuvigil. I don't use this stuff very often any more, but maybe it's time for a little boost. In the meantime, I'm gonna stop researching for a post I am writing and close my eyes. I'll see you on the other side of a long nap.
:)
Actually, I've become very, very sleepy in the past few days. I've actually taken some serious naps. Well, Friday, I think that I was actually running a fever which would explain why my body felt very shaky and weak. After dinner, I came home and slept for about 3 hours before watching a little TV and getting a full night's sleep still.
Yesterday, I felt asleep in my recliner for several hours. Not so sure what happened to the day but it didn't involve any writing. And today, I'm fighting the urge to go to asleep (again).
Earlier today I rehearsed with a student who is preparing for Solo Festival performance next Saturday. Last Thursday I rehearsed with four students (not my own) who are performing. Actually I'm accompanying about a dozen students next Saturday and an equal amount in another Solo Festival event a couple of weeks later. That's a lot of extra work including physical, mental, and motivational preparations.
Lots of piano practice too. Thankfully my hands have been feeling rather good after recent Rituxan infusions. Man, I am lucky that this treatment works for me. I am getting lots of use out of my hands.
Perhaps I need to relocate my samples/prescription of Provigil or Nuvigil. I don't use this stuff very often any more, but maybe it's time for a little boost. In the meantime, I'm gonna stop researching for a post I am writing and close my eyes. I'll see you on the other side of a long nap.
:)
Thursday, March 24, 2011
Carnival of MS Bloggers #84
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Kindness of Strangers, Old Friends, and New Doctors
by Rodney at CCSVI Locator
I love Mardi Gras. I have gone to the parades for all of my life. I have been blessed to ride in the parades. The riders throw beads, cups, stuffed animals, doubloons and other trinkets to the crowd. The entire event is a love affair of the city.
The parades go on for about 10 consecutive days. Last year my wife went to see her mother in Alabama, and our daughter and I went to a neighborhood parade that got expanded to three consecutive parades because of rain on previous days.
I parked five blocks away. Even though I had MS, five blocks was not that big of a challenge. I had some stumbling moments in the past, but no major problems.
I was fooling myself. I took the cane and failed to use it as we walked down the very poorly maintained streets of New Orleans.
We made it to the parade route and all was great. The people were nice. They gave my daughter and me drinks and food because the hour-long event went to three hours. I sat down on the curb and got along with everyone. My daughter made fast friends and everyone had a great time.
We had caught a garbage bag of stuff at the parades. Our daughter was so pleased with her catches she could fly. I know this neighborhood. I may not know the individuals, but I know where I am.
Realize that New Orleans was coasting on an incredible high. The New Orleans Saints football team had just won the Super Bowl and the city was full of love.
We walked and I stumbled. I got better set and walked on towards the car. About another half block and I was down on the sidewalk. I started to crawl towards a Dodge pickup truck. I would crawl, regain energy and get to my car.
I could not have been prouder of our 10-year-old daughter. She was a trooper and maintained calm in a horrific situation of her dad falling on the ground.
Then New Orleans came up big. I was crawling towards the truck, and someone got someone else and suddenly this young lady, a nursing student, pulled up to take the two of us to our car.
Total strangers stepped up and brought us back to the car.
I am eternally thankful to those helped me in a moment of extreme need.
Shortly, I filed for disability and began looking for new solutions beyond Tysabri for MS.
I was on Tysabri at the time, and my condition had deteriorated to a new low.
Within weeks, I began to work towards getting CCSVI.
So through tragedy, good turns of life can be presented.
The first good turn was when a place I loved gave me more love than I will ever know.
I have through my life tried to be the giver of love to those in need, and just the memory makes me cry.
My little girl and I drove to a restaurant, had dinner and drove home.
The next challenge is to see another parade. I will go again. Mardi Gras is something I want to experience again. This year I will probably not go to a parade. But next year I want to attend parades with the kids.
My life has been filled with goals. Marriage. Children. Home.
My next goal of going to a parade is somewhat selfish, but I want to just stand before a parade and feel the love.
And I will do it with the help of my family.
by Tina of MS Keeps Life Interesting
Ah yes...class reunion time!
Preparation meant:
* Try on approximately 16 different outfits to see which one makes me look less spherical.
* Find which jeans elongate my 5'1" stature.
* Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
* Accessorize in a manner that says, "I still got it". Whatever "it" is. Or was.
I was a What Not To Wear episode. In summary, I felt like I shouldn't wear any of it. But the reality is...I've known these folks since about 1977. I'm not fooling anyone with a crafty pair of jeans or dazzling top. I'm not 100lbs. I'm not 5'7". Let the secret be out.
So there I was, entering the establishment and immediately checking in at the...ladies room. When I'm anxious, my bladder shrinks to the size of a pea. No pun intended. Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion. And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways. Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug. That can be very awkward for both parties. Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another! Yaaaaay! My friends! Oh how I'd missed them! They seemed to know me upon first glance and vice versa. Whew. That was easy...
Side note: I love that most of the guys are bald. My husband didn't feel so out of place. Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991? If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies. They wouldn't have changed a thing!
So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased. It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible. After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned.
Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle. I had to navigate a series of steps, as well. They were narrow, which added an extra little spice to the venture. All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious. It ain't a party 'til someone wants to call an ambulance for your mommy, right kids! RIGHT!
But I made it...all 7 times. Without falling, without so much as tripping. Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice. And then it happened out of nowhere. The lights went dim, the colored disco ball spun, and the music began. Oh no. I never, ever used to turn down an opportunity to dance!
I immediately took a step toward the dance floor, but stopped myself. I decided it was a "No" with a capital N. I simply couldn't dance. I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out. But wait. These are the people I've known since 1977. And these are my favorite songs. MS...may I have this dance? Just this once?
It Takes Two! Apache - Jump On It...complete with applicable "cowboy with lasso" dance! Lady Gaga for good measure! Perfect! As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate. But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance". It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest. My girlfriends were clapping with approval, so I must've been doing something right. Come to think of it, maybe that truly is the correct way to dance to a Gaga song? Hey thanks, ms!
What was I worried about, you know? I was able to be there and have a blast! I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)! And I was able to reconnect with some wonderful folks that I've missed dearly over the years. I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure. That's what panty liners are for! Did I just say that out loud? Wow. I really AM just like my grandmother...
But behind every wobbly woman is a strong man to shove her into the truck. Many thanks to my dear husband for being that strong man. In sickness and in health...in wobblies and in strength...in temporary blindness and in clarity...he loves me through all seasons. And I love him right back :-)))
by Maryann of MS and ME
My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.
After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.
I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.
He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.
Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.
I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.
by Tanya Asbreuk
Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” On top of that, I had tremors in both arms and hands – worst in my left. This was happening as I was finishing up my manual drafting class at college, which is all about drawing very neat and specific lines with a pencil and ruler. I couldn’t even keep the ruler still with my left hand. I also had a strange sort of spasticity in my right leg – I’d be walking along, then suddenly my leg would kick out randomly, and I was never sure if it was going to end up where I expected it to be. This is called “Ataxia. ” I was using public transit and walking a lot at the time (and still do). I also started slurring my words slightly, and had trouble concentrating on tasks that were usually very simple for me – called “Cognitive Impairment” or "Cognitive Dysfunction."
It was like all these things that I had taken for granted about my body were tired of being ignored, and were all having temper tantrums at once. It was at that point that I started looking at my body as separate from me, and I spent a lot of time asking it what the **** it was doing. My Neurologist told me I was actually having three separate attacks that just happened to overlap. It didn’t make me feel any better about it. Then came the corticosteroids… and I lost some serious time that week. The funny thing about taking 1200mg of steroids in 3 days isn’t what happens during those days – it’s what happens afterwards, as your body is flushing them out. My class apparently went on a field trip the week after my steroid binge, and I went with them. I participated, I asked questions (maybe not as intelligently as normal) and… I have no memory of that field trip. I thought I had dreamed it, and I had to ask my Instructor if I had actually been on a roof that day. I’m just glad there were people around to keep an eye on me! My nurses have since told me that is not a typical response to the steroid, even at that dosage. I’m special, I guess. I sure as heck didn’t imagine it.
I always wondered if there had been warning signs in my past – something that I didn’t know I was supposed to take seriously. After my diagnosis I started researching everything I could think of – early onset symptoms of multiple sclerosis, MS diagnosis, MS causes, disease progression, MS symptoms in women… and came out with a lot more questions than answers. I found out that MS occurs about twice as often in women than men, tends to hit my age group more than others (25 to 45 years,) tends to occur more often in Caucasians then other groups, tends to happen more often to people who live in temperate climates, in developed first-world nations… in other words I fit the profile, but no one seemed to know anything for sure. There is no proven genetic link, but it tends to happen about 20% more often in families having a history of MS. Mine doesn’t.
This concludes the 84th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on April 7, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 5, 2011.
Thank you.
Thank you.
Comments for this post.
Tuesday, March 22, 2011
The Rising Price of MS Disease-Modifying Medications
Yesterday an article was published (shown below) in Bloomberg which really raised my hackles (if I indeed had hackles). The topic is how much the prices of MS medications have increased since the introduction of Gilenya. According to a MarketWatch report, "the multiple-sclerosis market could grow to $15 billion by 2015."
At that time, I looked up the cash prices for four other MS disease-modifying medications. Glad that I did because now we can compare how much pricing has increased in only six months. These numbers come from the same source, drugstore.com, for side-by-side comparison.
When I was first prescribed Copaxone in October 2005, the price had recently been increased to $18,000 per year. It now costs 2.5 times that...a 150% increase in five years. Now that's tremendously outrageous.
As you read many different financial reports and articles, you will note that the numbers quoted vary from source to source. Such is the nature of the pharmaceutical business. Patients do not have easy access to information such as wholesale price, and in all actuality, that number means very little to the end user. This is one reason I prefer to quote cash prices, the amount you would need to pay without insurance coverage.
Please read the following article at its original source, Bloomberg. I only include it here as sometimes news articles change locations or become difficult to find again.
"Currently, Teva Pharmaceutical Industries own the market's best-selling multiple-sclerosis drug, Copaxone, which had $3.3 billion in sales in 2010. Biogen's Avonex also had more than $2 billion in annual revenue, while Bayer AG's Betaseron and Merck's Rebif had more than $1 billion in sales."It is expected that Gilenya will net more than $3 billion in annual sales. When the pricing of Gilenya was announced in September, members of the MS community were outraged. I was disappointed to say the least. $4000 per month for any medication is outrageous.
At that time, I looked up the cash prices for four other MS disease-modifying medications. Glad that I did because now we can compare how much pricing has increased in only six months. These numbers come from the same source, drugstore.com, for side-by-side comparison.
As you read many different financial reports and articles, you will note that the numbers quoted vary from source to source. Such is the nature of the pharmaceutical business. Patients do not have easy access to information such as wholesale price, and in all actuality, that number means very little to the end user. This is one reason I prefer to quote cash prices, the amount you would need to pay without insurance coverage.
Please read the following article at its original source, Bloomberg. I only include it here as sometimes news articles change locations or become difficult to find again.
Novartis’s $48,000 Pill Spurs U.S. Price Increases for Older MS Treatments
By Eva von Schaper and Naomi Kresge - Mar 21, 2011
The prices of multiple sclerosis medicines have risen as much as 39 percent since last year, even as competition intensified with the introduction of the first pill to treat the disease.
Teva Pharmaceutical Industries Ltd. (TEVA) said it raised the price of its MS drug, Copaxone, to about $42,300 a year, a 39 percent jump since January 2010. In September, Novartis AG (NOVN) won approval for Gilenya, pricing it even higher at $48,000, in part because it’s the first drug in pill form, while the other treatments must be injected or infused. As analysts say Gilenya will take a significant share of the market, charging more for the older therapies is a way to keep revenue steady when unit sales erode.
The cost of the MS drugs, which patients generally take for life, now rivals that of cancer medicines such as Roche Holding AG (ROG)’s $50,000-a-year Avastin. The MS treatments may be out of reach for patients who don’t have insurance or don’t qualify for help from the companies, at a time when governments worldwide are seeking to rein in health-care spending.
“It’s just a crazy situation,” said Brenda Lakatos- Shaffer, a 45-year-old MS patient in Dallas who counsels Medicare beneficiaries for the National Multiple Sclerosis Society, in an interview. “Not only is having MS absolutely horrible, and you have the crazy side effects and quality of life with these medicines, but then you see the prices go up.”
Teva and Biogen Idec Inc. (BIIB), which makes the Tysabri and Avonex drugs, responded with their own price increases as the companies sought to generate more revenue before Gilenya wins significant market share.
Gilenya’s Premium
Novartis, based in Basel, Switzerland, was able to demand a premium for Gilenya because it frees patients from injections, Fabian Wenner, an analyst with UBS AG in Zurich, said in an interview. The pill’s monthly cost was initially between $800 and $1,200 higher than existing drugs, according to prices from the website DestinationRx.com.
Gilenya’s pricing reflects the company’s research costs and the advance in treatment it offers patients, said Eric Althoff, a Novartis spokesman, in September. He didn’t respond to requests by phone and e-mail last week for additional comment.
Avonex, sold by Weston, Massachusetts-based Biogen, had a 6 percent price increase in December, according to a March 7 note by RBC Capital Markets analysts who cited IMS Health Inc. data. Total prescriptions for Avonex have declined 4 percent since Gilenya entered the market, the RBC analysts said.
Shannon Altimari, a spokeswoman for Biogen, said the company doesn’t disclose historical pricing information.
‘Competitively Priced’
Copaxone’s price rose 9.9 percent in January 2010, 9.9 percent in May, and 14.9 percent in January 2011, Teva said. The medicine costs about $3,524 a month based on the wholesale acquisition price, according to Petah Tikva, Israel-based Teva. That’s about $42,300 a year. DestinationRx lists the annual cost at about $45,046.
“Copaxone is competitively priced relative to other relapsing-remitting multiple sclerosis therapies,” Teva said in an e-mailed statement. “The current price reflects the product’s value.”
Biogen’s Tysabri costs about $3,566 a month, or $42,788 a year, while Avonex’s price is $37,544, according to Biogen. The U.S. company markets Tysabri with Dublin-based Elan Corp.
“Biogen Idec and Elan are committed to new and existing patients having access to Tysabri” for approved uses, Elan said in an e-mailed statement. The companies said they have programs to assist patients with their out-of-pocket costs for the medicines.
Further Increases
The wholesale price for Bayer AG’s Betaseron is $37,294 a year, according to the Leverkusen, Germany-based company. Merck KGaA (MRK), based in Darmstadt, Germany, said the wholesale cost of its Rebif drug is $36,825 a year. Both companies said they also offer patient assistance programs.
The prices may rise further, Leerink Swann & Co. analysts said in a Feb. 7 note to clients. A doctor Leerink interviewed “is unaware of the levels at which point the insurers may start to push back and sees room for additional increases,” the analysts said.
The MS treatments are part of a burgeoning category known as specialty drugs, which are designed for diseases that have enormous effect on people’s lives, such as MS or cancer, said Jacqueline Kosecoff, chief executive officer at Prescription Solutions, the pharmacy benefits manager owned by UnitedHealth Group Inc.
“Many have enormous promise but they are very, very expensive,” Kosecoff said in an interview. “How can society provide an opportunity for people to take advantage of them and not be buried by the cost?”
Injected or Infused
MS causes the immune system to attack the insulating tissue around nerve fibers. This stops nerve cells from sending signals, sapping patients’ energy, blurring their vision and slowly robbing them of mobility, balance and coordination.
The disease affects about 2.1 million people worldwide, many of whom have trouble sticking with injected or infused therapies because they’re difficult to use or have side effects, according to the MS Society, a New York-based patient group.
“People are frustrated, hoping for medical treatment that will really help, and yet everything is just out of reach,” said Kathleen Wilson of Eugene, Oregon, who founded MSWorld, a patient message board with more than 45,000 members, in an interview.
Some MS patients qualify for coverage through Medicare, the U.S. health insurance program for the elderly and disabled. Medicare enrollees may pay about $600 a month out of their own pockets for an injection that costs $1,600 to $2,400 a month, said Lakatos-Shaffer, the Dallas-based patient counselor. Most Medicare patients she advises have limited incomes, keeping disease-modifying drugs out of reach even with government help.
$700 a Month
“I would talk to clients who would be getting, let’s say, $700 a month from Social Security because they couldn’t work,” Lakatos-Shaffer said. “They’d have $700 a month for living expenses and their drugs.”
Doctors predicted that Novartis’s Gilenya will imperil sales of all MS drugs in the coming 12 months, Citigroup Inc. analysts including Yaron Werber said in a Feb. 8 note to clients, which was based on a survey of neurologists who treat MS patients.
The doctors expected Biogen’s Tysabri will be hurt more than Avonex will, probably because those with a severe form of MS wouldn’t be put on Avonex, Werber said in an interview.
Novartis booked $13 million of Gilenya sales last year, the company said in January. The medicine may earn between $60 million and $70 million in the first quarter of this year, according to Michael Yee, an analyst with RBC.
Market Leaders
Copaxone, Teva’s best-selling drug, brought in $3.3 billion last year. Avonex had sales of $2.5 billion, while Tysabri generated $900 million.
Gilenya is set to lead the market in 2017, Leerink estimates, with $2.9 billion in global sales, and Copaxone would be in second place at $2.7 billion. Total sales of MS drugs will grow to about $15 billion from $10 billion now, Leerink said.
Under Novartis’s patient assistance program, the company pays out-of-pocket costs for those who aren’t on Medicare. The Swiss drugmaker pays as much as $800 monthly in co-payments for Gilenya, and helps patients navigate testing and monitoring recommended by U.S. regulators, paying as much as $600. Patients need to be monitored for six hours after their first dose of Gilenya, along with checks of the liver, eyes, blood and heart.
Teva provides assistance and support programs, according to Denise Bradley, a Teva spokeswoman, who didn’t elaborate on eligibility requirements and the percentage of Copaxone patients involved in the programs.
Company Assistance
Biogen spent $230 million on its patient assistance programs and charitable donations, Biogen’s Altimari said. The company will help patients better understand what their insurance will cover and determine out-of-pocket costs, as well as assist with co-payments and other services.
“Our belief is that patients should have access to the therapy they need to treat their disease, regardless of their financial situation,” Altimari said in an e-mailed statement.
Dean Kramer, 60, doesn’t qualify for such programs because of her retirement fund.
Diagnosed in 1984, Kramer started taking Teva’s Copaxone in the late 1990s and recalls the drug cost $1,100 a month then. She had to pay $100 of that out of her own pocket each month. Then a job change forced Kramer to switch to a less generous insurer. After a year’s subsidy from a charity program, the Maryland resident faced a choice between dipping into her retirement fund or quitting her MS therapy. She chose to quit.
‘Desperate’ People
Kramer relies on diet, exercise and two cheap medicines to improve her mobility. Gilenya is intriguing because it’s more effective than the older therapies, Kramer said. She’s waiting to see the side effects, aware that her personal cost-benefit calculation may change if her symptoms worsen.
“People get desperate and look for anything that will make them feel better,” she said in a telephone interview.
The price increases may not be sustainable for the older drugs, said Trung Huynh, a London-based analyst with Datamonitor, a business information and market analysis company.
“In the past they’ve been able to get away with that because of limited competition, but not with Gilenya,” Huynh said in an interview. “This will help them in the short term, not the long.”
The market will soon get more competition. Three oral drugs are in late-stage testing and may be available within the next one to two years, according to UBS’s Wenner. They are Teva’s laquinimod, Biogen’s BG-12 and teriflunomide from Sanofi-Aventis SA of Paris. A fourth medicine, Merck KGaA’s cladribine, was rejected by European regulators last year and failed to win U.S. approval this month.
“The oral drugs are the bright shining star for us, but it’s no closer than not having an oral drug at all, with Gilenya priced so high,” Lakatos-Shaffer said.
To contact the reporters on this story: Eva von Schaper in Munich at evonschaper@bloomberg.net; Naomi Kresge in Berlin at nkresge@bloomberg.net
To contact the editor responsible for this story: Phil Serafino at pserafino@bloomberg.net.
®2011 BLOOMBERG L.P. ALL RIGHTS RESERVED.
Sunday, March 20, 2011
Please Welcome New MS Bloggers to the Community
My Life with MS - Tiffany
New website:
It was August the summer of 09 and i was at my sisters graduation party and was experiencing some numbing in my feet and legs so any ways by the next day i was being carried into the car because i was unable to walk on my own. So my mother took me to the hospital and they ran a tons of tests on me and 4 days later came to the conclusion i had MS. This was one of the saddest/hardest days of my life. my life changed from that point on..
i have never fully recovered from that first episode, my balance has never fully came back, my knees are now locking and popping, bladder is always wanting to empty, toes and fingers are always numb.Teens with MS and Other Disabilities - Jessica
I am currently 17. I am a singer/songwriter and follower of God. He is my life and my everything. I love to help other people and have been given that very opportunity via raeflections.me blog talk radio. I want to be active in the Multiple Sclerosis community after being diagnosed when I was just 16. I hope this blog helps other people with there struggles with different disabilities as the world would call them. But I call disabilities, different abilities. I am also a singer/songwriter pursuing a career in music. I've been involved with music ever since I was young. I love it with a fiery passion.Spinal Tapped: Life as a Teen with MS - Cade
Hi! I’m Cade, I’m 18 and a college student in New England, and I was recently diagnosed with multiple sclerosis (MS).Multiple Sclerosis: Blacks Do Get This Disease - KPFrank
There are a lot of blogs out there about MS, but none that I’ve seen written by teens or for teens. So even though I don’t know a lot about my own disease yet (oy vey), I thought I’d give it a shot. I especially wanted to launch it now, even though I might not be well-prepared enough, because it’s the tail end of MS Awareness Week.
I hope to have it set up so guests can post, and I want to know about other teens experiences with the disease, or adults who had it as teens. Feel free to post thoughts, questions, or whatever. There aren’t many people with MS (400,000 in the US) so I don’t really know how much response this will get but I thought I’d try… If you read this, please pass it on to anyone you know who has MS.
A Beautiful, smart, African American mother, sister, daughter, and friend with MS. I want someone to read this blog and see the WONder working power of Christ, and the power of his word....Holes in My Brain - Jamie
I am a 35 year old African American that was diagnosed with MS on 2/16/2011. This diagnosis comes after a year and a 1/2 of crazy symptoms. I will hopefully shed some light on this mysterious disease through my blogs.
I prayed this prayer in 2008:
"Lord I know I have been a mess.....but if it be your will...bring me to the foot of your throne......all i ask is that you don't embarrass me and don't kill me.....but bring me to you"
So you see....I don't look at MS as a Death wish, (as I did) or even some disabling beast.....through therapy, diet, exercise, and of course my faith in the Lord I will have peace on this journey...I look at it as HIM saving me....and answering a prayer at the same time.
I eat too much. I think too much. I don't sleep nearly enough. I love wine, my husband, my daughter, and being snarky, not necessarily in that order.MS Keeps Life Interesting - Tina
Things I love: my Lord, my husband, my kids, my family, my friends, and cheesecake. I run on Dunkin'. I'm closer to 40 than 30. And I happen to have ms. I won't capitalize it, because it's not worthy. I won't refer to it as "my ms", because I won't own it. But really, the most important thing to know about me is...I am blessed!Tanya: Live Better With MS
My name is Tanya Asbreuk, and I have Multiple Sclerosis. It’s a condition I have, but it doesn’t define who I am or what I aspire to do. I’m still a writer and an artist and a singer and a dancer and a drafter and a sister and a daughter, even if I’m not dancing as much or doing as much Yoga as I used to. I’ve learned to create a positive attitude, and I really believe that’s the first step to healing! Since my diagnosis I’ve been simplifying my life, to make sure I can get done everything that needs to be done, while still having time for the things I really want to spend time on. I realize that’s a goal for most people, but dealing with the sometimes debilitating fatigue that is such a common symptom of MS has made me really, really aware of what I’m willing to spend time doing. I’m finally at a point at which I feel like I can have a real life again! Now, I want to share my story and my knowledge to help other people.My MS Journey - Kelly
I was diagnosed April 6, 2010 with MS (multiple sclerosis). I decided to start a blog about this journey. I do not know why God decided I can handle this. I don’t know why He thinks I can handle a lot of things we have going on in our life. It’s what we do with it I think. I am looking to share my life, experiences, etc., and to get as much information I can from others. Here’s to a new journey.
New website:
Having MS - nice simulation exercises
Friday, March 18, 2011
7 More PML Infections and 1 More Death in Tysabri Patients; 102 Total PML/Tysabri Patients (March 2011)
This morning I woke up very early cause I had to make my way the hospital for my Rituxan infusion. Very proud of myself that I was actually up early and could check some email before leaving. I happened to check my blog stats and noticed that someone at BiogenIdec had been reading my blog posts related to Tysabri/PML patients.
Hmmm, what was going on over at Biogen I thought? So I conducted a search for newly reported cases of PML and found nothing. I lurked over at cafepharma and saw that a couple of (anonymous) people were discussing a new total of 102 cases. I searched for news announcements on Twitter.....nothing came up. So I left a quick thought around 6am.
After returning home late this afternoon, I find that indeed a brief Nasdaq article had been published this afternoon. The first version was pulled within 10 minutes (before I could read it) but a corrected version quickly took it's place. The correction can be found below.
Out of 102 reported cases to date, 42 (41%) have occurred in the United States, 55 (54%) occurred in Europe, and 5 (5%) were elsewhere in the world. The total number of deaths in the 102 cases is 21 patients representing a 20.6% death rate amongst those Tysabri patients diagnosed with PML (progressive multifocal leukoencephalopathy).
Hmmm, what was going on over at Biogen I thought? So I conducted a search for newly reported cases of PML and found nothing. I lurked over at cafepharma and saw that a couple of (anonymous) people were discussing a new total of 102 cases. I searched for news announcements on Twitter.....nothing came up. So I left a quick thought around 6am.
After returning home late this afternoon, I find that indeed a brief Nasdaq article had been published this afternoon. The first version was pulled within 10 minutes (before I could read it) but a corrected version quickly took it's place. The correction can be found below.
Out of 102 reported cases to date, 42 (41%) have occurred in the United States, 55 (54%) occurred in Europe, and 5 (5%) were elsewhere in the world. The total number of deaths in the 102 cases is 21 patients representing a 20.6% death rate amongst those Tysabri patients diagnosed with PML (progressive multifocal leukoencephalopathy).
CORRECT: Biogen Reports 7 More Infections In Tysabri Patients
("Biogen: 7 More Infections, 1 More Death In Tysabri Patients," at 4:09 EDT, misstated the regional distribution of cases in the eighth paragraph. The correct version follows:)
By Thomas Gryta
Of DOW JONES NEWSWIRES
NEW YORK -(Dow Jones)- Biogen Idec Inc. (BIIB) reported seven more cases of a rare brain infection among multiple-sclerosis patients taking Tysabri, sold with Elan Corp. (ELN) bringing the total number of affected patients to 102 as of March 4.
The Weston, Mass., biotech company reported that one more of those patients has died, bringing total deaths to 21. The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.
The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease.
Biogen recently halted enrollment in a major clinical trial aimed at testing the earlier use of Tysabri, citing a slower-than-expected pace of finding participants and the desire to devote resources toward "risk stratification" efforts for the drug.
Biogen is developing a blood test that may better determine the chances of patients contracting PML. The test recently received CE Mark approval in Europe and the companies are conducting large studies of its effectiveness.
Regulators have said that they monitor cases of PML as they occur and have concluded that the benefits of the medicine outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006--because of its effectiveness--with a strict access plan that monitors patients.
The overall global PML rate is now at 1.23 per 1,000 patients. A Biogen spokeswoman said the current PML figure is "still generally within what we saw in clinical trials."
Of the total PML cases, 42 were in the U.S., 55 were in the European Union and five in other areas.
The risk of the infection generally increases with the number of monthly infusions that a patient receives, but that rate appears to drop after 30 months. Biogen is studying this drop and warns there is limited information from patients on the drug longer than 36 months.
The most-recent data translate to a rate of 1.87 cases per 1,000 patients on the drug for a year or longer, rising to 2.41 per 1,000 for those on the drug for two years or longer, and dropping to 1.4 for more than three years.
Looked at another way, the rate is about 1.68 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.44 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.
-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com
(END) Dow Jones Newswires 03-18-111637ET Copyright (c) 2011 Dow Jones & Company, Inc.
Thursday, March 17, 2011
Jazz Alphorn: Arkady Shilkloper
Since 1998, Arkady has been performing jazz on the alphorn, not an instrument one would immediately think of as a jazz instrument. (The alphorn is the instrument used in the old "Ricola" commercials.) However the instrument, which can create pitches of the harmonic series, is unusually suited for the task.
Here is another video where Arkady is playing jazz alphorn taking advantage of multiphonics and circular breathing. Multiphonics is an extended technique whereby the performer creates two pitches by singing one note while buzzing another. A third or fourth pitch can appear with the addition of the sound waves. Basically, it's a pretty cool technique.
Wednesday, March 16, 2011
Patients Living with Multiple Sclerosis and Rheumatoid Arthritis
Patients living with more than one chronic disease face unique challenges. Unfortunately, comorbidities seem more and more common especially with autoimmune diseases. As someone living with multiple sclerosis and rheumatoid arthritis, I am understandable drawn to other patients who live with the same combination of diseases.
This week is Multiple Sclerosis Awareness Week so I asked a few MS/RA patients to share their stories with us today. Six patients were kind enough to contribute.
Read these posts on HealthCentral:
Living with Rheumatoid Arthritis and Multiple Sclerosis: Interviews with RA Patients (MyRACentral)
Living with Multiple Sclerosis and Rheumatoid Arthritis: Interviews with MS Patients (MultipleSclerosisCentral)
This week is Multiple Sclerosis Awareness Week so I asked a few MS/RA patients to share their stories with us today. Six patients were kind enough to contribute.
Read these posts on HealthCentral:
Living with Rheumatoid Arthritis and Multiple Sclerosis: Interviews with RA Patients (MyRACentral)
Living with Multiple Sclerosis and Rheumatoid Arthritis: Interviews with MS Patients (MultipleSclerosisCentral)
Monday, March 14, 2011
Welcome MS Bloggers
Please welcome new MS bloggers to the community. If you have a blog you wish to be included please contact me. (If you have contacted me and I haven't listed you, please send me another email.)
Dancing with Monsters - Kate
I'm an artist who has been living with multiple sclerosis since I was 20. I've discovered that thinking about chronic illness and healing as a creative process helps me move through the hard stuff and get back to the joy.
Dochas: Living a Life of Hope with MS - Lydia
I am a 28 year old girl, from Dublin, Ireland and am only a few months into my journey with Multiple Sclerosis. I was diagnosed with RRMS in October 2010, and have been on Copaxone daily injections since November 2010. Dóchas is the Irish word for "Hope". I want this blog to encourage hope and positivity in others that are also dealing with Multiple Sclerosis.
My New Normals - Nicole
I'm a 35 year old married, but independent woman without little ones. I've gone from nursing in New Orleans, Louisiana to sales throughout mid-Atlantic Maryland and now writing with you, wherever you are! Enter Multiple Sclerosis. Damn! It ransacked my fast paced “normal" life like hurricane Katrina nearly wiped away New Orleans! There is more to me than MS and I am here to remember exactly what that is through an old passion....writing! It seems if you look hard enough you can findsomething you can control! For example, today I’ve chosen to move forward despite multiple sclerosis and this life changing exacerbation. Instead, of trying to be who I use to be I’m refining who I am now. BUT, boy would I at least like to drive!!!! If you have MS or for these purposes have been banned from driving. I would love to hear how you are coping. As for me, writing is slowly moving me closer to an impermeable happiness that stands independent of the circumstances of my life. Happiness despite...
The Day in My Life with MS - Jennifer
am a mother of four beautiful children, and a grandmother of one spunky 2 1/2 year old grandson. I was diagnosed with MS in 2008 - and found the need to share my story with the world. It isn't the end of life as you know it, even though your life may change drastically. You can find positive things to help you carry on... Positive thinking and activities help you to carry on. Carry on with a smile on your face... :-)
The MS Muse - Kayla
My name is Kayla. I was diagnosed with MS in 2006. I'm a 20-something classical musician and teacher, web developer, student, writer and more. I like books and music and mountains. This blog is a place for me to ramble about things MS makes me think about. Sometime soon I'll add a link here that tells my MS story. Thanks for reading!
A Strong Cup of Tea - Mandie
I am 50 years old, having left England at 19 and arriving in the USA on 7/4/1979. I was diagnosed with Multiple Sclerosis in May of 2008 and my life has changed drastically since then....
Optimistic with MS - CSA
I am 27 years old. I was diagnosed with MS in September 2010. Being diagnosed with MS can be very difficult, so I decided to start this blog to try to express my feelings toward my diagnosis and my optimistic outlook for the future. My hope is to reach out to others who have been affected by MS, to provide a learning opportunity to those who know little about MS, and to provide people with ways to become involved in finding a cure.
Laughing with Primary Progressive MS - Karl
I'm a 44 yr old guy who is struggling with severe Multiple Sclerosis, effects of a spinal injury, severe depression, adoptee issues and abuse issues. I've been using humor a lot to combat my illness, hopefully that will come through here.
Walking Tall - Gilenya (new oral drug) Blog - Kathy
We noticed the first signs of Multiple Sclerosis in 1987. It began with numbness, tingling and difficulty walking. The official diagnosis came in 1992. I began Beta Seron in 1993 and have been on it until 2011; 18 years. On February 24, 2011 I went off Beta Seron, and on February 28, 2011, I began the first disease altering medication for MS, Gilenya.
365 Days of MS - Louise
Follow Maggie - Maggie
Me and MS -
Mein Leben mit MS - Birgit Bauer
Der Tag, an dem mir Ärzte mitteilten, das ich "Multiple Sklerose" habe, war der Tag, an dem mein Leben gegen eine Mauer prallte. Mein neues Leben begann. Wie ich heute lebe, erzähle ich hier! Alles ist anders und ich bin das Gegenteil von dem, was vielleicht manch einer mitleidig erwartet. Was als Krankheit begann, derzeit nicht heilbar ist, wurde zur Herausforderung und zur Chance meines Lebens.
Blog Haus - MS: Leben mit Multipler Sklerose - Stefan
In seinen zweiwöchentlichen Beiträgen beschäftigt sich der Schriftsteller Maximilian Dorner mit Aspekten rund um das Thema Multiple Sklerose: ungewohnt, schräg - aber immer eines: betroffen
Dancing with Monsters - Kate
I'm an artist who has been living with multiple sclerosis since I was 20. I've discovered that thinking about chronic illness and healing as a creative process helps me move through the hard stuff and get back to the joy.
Dochas: Living a Life of Hope with MS - Lydia
I am a 28 year old girl, from Dublin, Ireland and am only a few months into my journey with Multiple Sclerosis. I was diagnosed with RRMS in October 2010, and have been on Copaxone daily injections since November 2010. Dóchas is the Irish word for "Hope". I want this blog to encourage hope and positivity in others that are also dealing with Multiple Sclerosis.
My New Normals - Nicole
I'm a 35 year old married, but independent woman without little ones. I've gone from nursing in New Orleans, Louisiana to sales throughout mid-Atlantic Maryland and now writing with you, wherever you are! Enter Multiple Sclerosis. Damn! It ransacked my fast paced “normal" life like hurricane Katrina nearly wiped away New Orleans! There is more to me than MS and I am here to remember exactly what that is through an old passion....writing! It seems if you look hard enough you can findsomething you can control! For example, today I’ve chosen to move forward despite multiple sclerosis and this life changing exacerbation. Instead, of trying to be who I use to be I’m refining who I am now. BUT, boy would I at least like to drive!!!! If you have MS or for these purposes have been banned from driving. I would love to hear how you are coping. As for me, writing is slowly moving me closer to an impermeable happiness that stands independent of the circumstances of my life. Happiness despite...
The Day in My Life with MS - Jennifer
am a mother of four beautiful children, and a grandmother of one spunky 2 1/2 year old grandson. I was diagnosed with MS in 2008 - and found the need to share my story with the world. It isn't the end of life as you know it, even though your life may change drastically. You can find positive things to help you carry on... Positive thinking and activities help you to carry on. Carry on with a smile on your face... :-)
The MS Muse - Kayla
My name is Kayla. I was diagnosed with MS in 2006. I'm a 20-something classical musician and teacher, web developer, student, writer and more. I like books and music and mountains. This blog is a place for me to ramble about things MS makes me think about. Sometime soon I'll add a link here that tells my MS story. Thanks for reading!
A Strong Cup of Tea - Mandie
I am 50 years old, having left England at 19 and arriving in the USA on 7/4/1979. I was diagnosed with Multiple Sclerosis in May of 2008 and my life has changed drastically since then....
Optimistic with MS - CSA
I am 27 years old. I was diagnosed with MS in September 2010. Being diagnosed with MS can be very difficult, so I decided to start this blog to try to express my feelings toward my diagnosis and my optimistic outlook for the future. My hope is to reach out to others who have been affected by MS, to provide a learning opportunity to those who know little about MS, and to provide people with ways to become involved in finding a cure.
Laughing with Primary Progressive MS - Karl
I'm a 44 yr old guy who is struggling with severe Multiple Sclerosis, effects of a spinal injury, severe depression, adoptee issues and abuse issues. I've been using humor a lot to combat my illness, hopefully that will come through here.
Walking Tall - Gilenya (new oral drug) Blog - Kathy
We noticed the first signs of Multiple Sclerosis in 1987. It began with numbness, tingling and difficulty walking. The official diagnosis came in 1992. I began Beta Seron in 1993 and have been on it until 2011; 18 years. On February 24, 2011 I went off Beta Seron, and on February 28, 2011, I began the first disease altering medication for MS, Gilenya.
365 Days of MS - Louise
Follow Maggie - Maggie
Me and MS -
Mein Leben mit MS - Birgit Bauer
Der Tag, an dem mir Ärzte mitteilten, das ich "Multiple Sklerose" habe, war der Tag, an dem mein Leben gegen eine Mauer prallte. Mein neues Leben begann. Wie ich heute lebe, erzähle ich hier! Alles ist anders und ich bin das Gegenteil von dem, was vielleicht manch einer mitleidig erwartet. Was als Krankheit begann, derzeit nicht heilbar ist, wurde zur Herausforderung und zur Chance meines Lebens.
Blog Haus - MS: Leben mit Multipler Sklerose - Stefan
In seinen zweiwöchentlichen Beiträgen beschäftigt sich der Schriftsteller Maximilian Dorner mit Aspekten rund um das Thema Multiple Sklerose: ungewohnt, schräg - aber immer eines: betroffen
Sunday, March 13, 2011
Four Words 4 MS
Video can demonstrate different aspects of our lives than the written word. I received an email asking me to tell you about a new program being launched by mslifelines.com called Words 4 MS. (MS LifeLines is an educational support service for people living with MS and their families. programs MS LifeLines is sponsored by EMD Serono, Inc. and Pfizer Inc.)
Below are portions of the email I received announcing this program, in the spirit of MS Awareness Week:
People can submit their video and access the full program guidelines and submission criteria at MSLifeLines.com/Words4MS. (Website will be live on Monday, 3/14) Video submissions will be accepted from March 14th through July 13th.
Still Full Of Hope
My Mom, My Hero
These are just a few examples of how to tell a story in four words about your personal experience with multiple sclerosis (MS). Are there four inspiring, thought-provoking words that say how you feel, inspire you, or remind you of someone in your life who has helped you through your MS journey?
If so, MS LifeLines is asking you to share your story through video!
Through Words 4 MS, people living with MS or who have a loved one living with MS– like you – will be able to share their individual stories through video that might be revealed on www.mslifelines.com and other possible media outlets. We encourage you to submit a video that showcases how your life has been impacted by MS. Video submissions should follow the theme of Words 4 MS and include your personal, 10-second video depiction of how MS has impacted your lives using four words that describe this story (examples: Still Full of Hope, My Mom, My Hero).
We are asking you to help demonstrate how many people are touched by MS while also helping to raise awareness of this condition by sharing your four words today! Please visit www.mslifelines.com for the official guidelines and submission criteria.
MS LifeLines is an educational support service for people living with MS and their families. programs LifeLines is sponsored by EMD Serono, Inc. and Pfizer Inc.
Thursday, March 10, 2011
Carnival of MS Bloggers #83
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
What Does MS Equal To You?
By Mary K. Mennenga
Guilt as an emotion is what
People use to get what they want
The only way it's able to work is if you buy into it
Honestly only you can make yourself feel guilty
Of course people will use words to reinforce your interpretation
Of what they've said to help you in feeling guilty
It's more about your interpretation of what was said
Take great care whenever buying into guilt
Because if guilt is the reason behind your actions
Your actions will have little meaning
Because it's become something you have to do
Instead of what you want to do
By Lisa Emrich at Brass and Ivory
MS = a twisted roller coaster, spiraling and without brakes.
I can’t recall the last “real” roller coaster I rode. Honestly, I’m trying to rack my brain. Was it during a visit to Disney World in 1985? Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)
Living with multiple sclerosis is a bit like a roller coaster ride. Many different and ever changing roller coaster rides, in fact.
When first diagnosed, I think that the roller coaster is ridden in total darkness. You can’t see what obstacles, loops, twists, or drops are to come. The fear of the unknown can be overwhelming and you just want someone to turn the lights on.
When living with MS for a little time, you begin to see patterns which repeat. You get to know your own roller coaster track. If you have relapsing-remitting MS, this analogy may sound very familiar. Perhaps each relapse is like a separate ride which eventually comes back to rest. However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”
Dealing with life with MS can be an emotional roller coaster as well. You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance. Of course, no one has to go through these stages in any organized fashion. There are no hard and fast rules.
A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey. Your initial coaster may be like the gentle teacups which swirl in circles. As you learn more about the disease, you may begin to see what types of rides others experience. Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops. You know that you might be on that ride also at some point.
No matter what the ride entails. Know that we do not have to ride alone. Others have come to the amusement park with us. Our friends, family, loved ones, caregivers. And, honestly, we (those who live with MS) do not have exclusive access to the park. People living with other chronic and acute diseases may be there as well.
In fact, life itself is like a roller coaster, never completely flat nor static. We each move forward (whether we intend to or not) eventually. Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us. Choosing to never go this journey alone.
MS = a journey to destinations known and unknown
MS = a community of travelers who support each other
MS = the reason I am here, right now, reaching out to myself
by Tammy Malkowski from Pick Tammy's Brain
My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.
I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.
My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.
I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.
You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.
I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.
I may need your patience
And your compassion too.
But never your pity
For all I have to do.
I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.
I am making an effort
To be someone who
Is making a difference
In my own life too.
Give me a chance
Be on my side
I am still me
Even with all the drama inside.
My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.
The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.
by Tammy Malkowski (2/25/2011)
from Living! with MS by Denver Refashionista
Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)
I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.
One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.
My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.
Joy is often about valuing what you have, not morning what you have lost or could lose.
This concludes the 83rd edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on March 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 22, 2011.
Thank you.
Thank you.
Comments for this post.
Tuesday, March 8, 2011
What Does MS Equal To You?
MS = a twisted roller coaster, spiraling and without brakes.
I can’t recall the last “real” roller coaster I rode. Honestly, I’m trying to rack my brain. Was it during a visit to Disney World in 1985? Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)
During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating. During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating. (Can you tell I have vivid memories of a car ride which scared the living daylights outta me?)
Living with multiple sclerosis is a bit like a roller coaster ride. Many different and ever changing roller coaster rides, in fact.
When first diagnosed, I think that the roller coaster is ridden in total darkness. You can’t see what obstacles, loops, twists, or drops are to come. The fear of the unknown can be overwhelming and you just want someone to turn the lights on.
When living with MS for a little time, you begin to see patterns which repeat. You get to know your own roller coaster track. If you have relapsing-remitting MS, this analogy may sound very familiar. Perhaps each relapse is like a separate ride which eventually comes back to rest. However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”
Dealing with life with MS can be an emotional roller coaster as well. You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance. Of course, no one has to go through these stages in any organized fashion. There are no hard and fast rules.
I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more. It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me. I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.
A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey. Your initial coaster may be like the gentle teacups which swirl in circles. As you learn more about the disease, you may begin to see what types of rides others experience. Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops. You know that you might be on that ride also at some point.
It can be frightening simply knowing what others experience. Knowing what you might experience. Knowing what you have experienced and may again (or always). This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.” It seems better to know what the possibilities are rather than always riding with your eyes closed. Right?
No matter what the ride entails. Know that we do not have to ride alone. Others have come to the amusement park with us. Our friends, family, loved ones, caregivers. And, honestly, we (those who live with MS) do not have exclusive access to the park. People living with other chronic and acute diseases may be there as well.
In fact, life itself is like a roller coaster, never completely flat nor static. We each move forward (whether we intend to or not) eventually. Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us. Choosing to never go this journey alone.
MS = a journey to destinations known and unknown
MS = a community of travelers who support each other
MS = the reason I am here, right now, reaching out to myself
I can’t recall the last “real” roller coaster I rode. Honestly, I’m trying to rack my brain. Was it during a visit to Disney World in 1985? Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)
Living with multiple sclerosis is a bit like a roller coaster ride. Many different and ever changing roller coaster rides, in fact.
When first diagnosed, I think that the roller coaster is ridden in total darkness. You can’t see what obstacles, loops, twists, or drops are to come. The fear of the unknown can be overwhelming and you just want someone to turn the lights on.
When living with MS for a little time, you begin to see patterns which repeat. You get to know your own roller coaster track. If you have relapsing-remitting MS, this analogy may sound very familiar. Perhaps each relapse is like a separate ride which eventually comes back to rest. However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”
Dealing with life with MS can be an emotional roller coaster as well. You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance. Of course, no one has to go through these stages in any organized fashion. There are no hard and fast rules.
I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more. It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me. I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.
A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey. Your initial coaster may be like the gentle teacups which swirl in circles. As you learn more about the disease, you may begin to see what types of rides others experience. Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops. You know that you might be on that ride also at some point.
No matter what the ride entails. Know that we do not have to ride alone. Others have come to the amusement park with us. Our friends, family, loved ones, caregivers. And, honestly, we (those who live with MS) do not have exclusive access to the park. People living with other chronic and acute diseases may be there as well.
In fact, life itself is like a roller coaster, never completely flat nor static. We each move forward (whether we intend to or not) eventually. Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us. Choosing to never go this journey alone.
MS = a journey to destinations known and unknown
MS = a community of travelers who support each other
MS = the reason I am here, right now, reaching out to myself
Friday, March 4, 2011
Carnival Delay
Hi folks,
Did you notice? The Carnival didn't go up yesterday. Tuesday was extra busy. Wednesday was normally day. On Thursday after going and going and going non-stop from 10 am to past 7 pm, I gave myself an extra day to collect the posts. Thought that I would take time today during an infusion of Rituxan to take care of getting the Carnival posted.
Today has not been a boring day, that's for sure. And not really in a good way. But things are going more smoothly now. After having trouble getting an IV started this morning, me bending my elbow too far and causing the delicate IV we did get started to infiltrate, thus getting a dose of steroids and saline in my arm (not the vein), I was tired. Silly arm of mine didn't let me know that there was a problem with the IV until I already had a HUGE bulge on my forearm (which was BELOW the IV insertion point). I think I do know when the tube must have broken through the vein wall as I did feel a 'pinch' at one brief moment while I was adjusting myself in the chair and typing on the computer.
Then a different was brought in to check for veins with a doppler scan (and proceeding to miss three sticks herself, I think), I fainted. My blood pressure seriously was measuring a systolic (the bigger number) pressure of 40 (I was told much later in the day). I'm also told that I stayed lucid enough to talk a bit. I just remember trying to continue to reach through the fog to stay connected with the kind nurses at this new-to-me infusion center.
Then there was talk of admitting me to the hospital so that another team could put an IV in my upper arm (which this outpatient department doesn't do). But eventually pediatric nurses were called to help get another IV started. (Yes, I did finally make this suggestion after the nudge of finding someone who might work with small and difficult veins didn't result in a successful IV.)
I honestly lost track of how many attempts to start an IV were as a number of them happened while I was almost blacked-out. I'm sure that it was at least eight. However, my experience here is still better than the previous infusion location I must say. The attitude and atmosphere made a huge differnce. And Yes, the peds nurses (it took two of them working together) got a good IV going. We were finally back in business.
But since the pre-treatment steroids didn't make it into my veins, I had the same infusion reaction at about one hour into the drip (and we were already going at a planned slow pace with the infusion rate). We had hoped that my body was still processing the steroids which ended up sub-Q. More IV benadryl and steroids were given, the drip stopped, and after 30 minutes we were ready to begin the infusion again.
That was several hours ago. Since we are staying at a slow infusion rate, I still have a couple of hours to go. But at least the medicine is flowing into my body now without difficulty.
As a result of all this drama, I haven't felt like writing, collecting, or creating any posts or articles (including the Carnival) today. My apologies....but now you know what's been going on with me today (and this week, see P.S. below). Thinking of most of the days this week, I've been on the go-go-go much more than usual and I'm exhausted.
Hope things are good with you. Don't fret, the Carnival will indeed come (sometime).
P.S. I was able to spend a large chunk of time catching up with an old friend who was in town this past Sunday. I taught as usual on Monday. Tuesday evening I attended a concert and went out to eat after wards with a small group. Wednesday was normal busy. Thursday was gong to be somewhat busy, but became a hugely long 8 hour day away from home. Today, I arrived at the hospital before 7am; I will probably finish close to 5pm. Long days indeed.
Did you notice? The Carnival didn't go up yesterday. Tuesday was extra busy. Wednesday was normally day. On Thursday after going and going and going non-stop from 10 am to past 7 pm, I gave myself an extra day to collect the posts. Thought that I would take time today during an infusion of Rituxan to take care of getting the Carnival posted.
Today has not been a boring day, that's for sure. And not really in a good way. But things are going more smoothly now. After having trouble getting an IV started this morning, me bending my elbow too far and causing the delicate IV we did get started to infiltrate, thus getting a dose of steroids and saline in my arm (not the vein), I was tired. Silly arm of mine didn't let me know that there was a problem with the IV until I already had a HUGE bulge on my forearm (which was BELOW the IV insertion point). I think I do know when the tube must have broken through the vein wall as I did feel a 'pinch' at one brief moment while I was adjusting myself in the chair and typing on the computer.
Then a different was brought in to check for veins with a doppler scan (and proceeding to miss three sticks herself, I think), I fainted. My blood pressure seriously was measuring a systolic (the bigger number) pressure of 40 (I was told much later in the day). I'm also told that I stayed lucid enough to talk a bit. I just remember trying to continue to reach through the fog to stay connected with the kind nurses at this new-to-me infusion center.
Then there was talk of admitting me to the hospital so that another team could put an IV in my upper arm (which this outpatient department doesn't do). But eventually pediatric nurses were called to help get another IV started. (Yes, I did finally make this suggestion after the nudge of finding someone who might work with small and difficult veins didn't result in a successful IV.)
I honestly lost track of how many attempts to start an IV were as a number of them happened while I was almost blacked-out. I'm sure that it was at least eight. However, my experience here is still better than the previous infusion location I must say. The attitude and atmosphere made a huge differnce. And Yes, the peds nurses (it took two of them working together) got a good IV going. We were finally back in business.
But since the pre-treatment steroids didn't make it into my veins, I had the same infusion reaction at about one hour into the drip (and we were already going at a planned slow pace with the infusion rate). We had hoped that my body was still processing the steroids which ended up sub-Q. More IV benadryl and steroids were given, the drip stopped, and after 30 minutes we were ready to begin the infusion again.
That was several hours ago. Since we are staying at a slow infusion rate, I still have a couple of hours to go. But at least the medicine is flowing into my body now without difficulty.
As a result of all this drama, I haven't felt like writing, collecting, or creating any posts or articles (including the Carnival) today. My apologies....but now you know what's been going on with me today (and this week, see P.S. below). Thinking of most of the days this week, I've been on the go-go-go much more than usual and I'm exhausted.
Hope things are good with you. Don't fret, the Carnival will indeed come (sometime).
P.S. I was able to spend a large chunk of time catching up with an old friend who was in town this past Sunday. I taught as usual on Monday. Tuesday evening I attended a concert and went out to eat after wards with a small group. Wednesday was normal busy. Thursday was gong to be somewhat busy, but became a hugely long 8 hour day away from home. Today, I arrived at the hospital before 7am; I will probably finish close to 5pm. Long days indeed.
Wednesday, March 2, 2011
FDA Wants More Info on Risks of Merck's Cladribine; No Approval for Use in MS (for now)
In the United States, we will continue to have only one oral option (Gilenya) for use as a disease-modifying drug in multiple sclerosis. FDA rejects Merck's application for marketing approval of Cladribine oral tablets in the United States. More information regarding risks and benefits is needed. Additional studies are ongoing.
On January 21, 2011, the European Medicines Agency's or EMA Committee for Medicinal Products for Human Use (CMPH) - the European version of our FDA - rejected Merck's application for marketing approval of Cladribine (Movectro) for use in patients with MS.
Below is Merck's press release as published on Fierce Biotech.
Merck Receives Complete Response Letter From FDA on Cladribine Tablets New Drug Application
By Erica Teichert
Created Mar 2 2011 - 9:08am
Darmstadt, Germany, March 2, 2011 - Merck KGaA announced today that it received a complete response letter from the U.S. Food and Drug Administration (FDA) on the new drug application (NDA) for Cladribine Tablets, Merck's proprietary investigational oral formulation of cladribine, as a therapy for relapsing-remitting multiple sclerosis (MS).
A complete response letter (CRL) is issued by the FDA when the agency's review of a file is complete and the application cannot be approved in its present form. In the complete response letter, the FDA concluded that substantial evidence of Cladribine Tablets' effectiveness was provided by the CLARITY1 study. However, the FDA has requested the Company provide an improved understanding of safety risks and the overall benefit-risk profile either through additional analyses or by additional studies. Merck intends to request an end-of-review meeting with the FDA to clarify next steps and to identify whether data from completed and ongoing clinical studies can address the Agency's questions.
"Our commitment to transform the way people living with MS approach their therapy options remains steadfast," said Fereydoun Firouz, President and CEO of Merck's U.S. subsidiary EMD Serono, Inc. "We look forward to working with the FDA to address the safety issues in its letter and will continue to move toward identifying a potential path that provides patients and physicians the opportunity to have access to Cladribine Tablets in the treatment of MS."
Merck remains committed to completing the ongoing clinical trials with Cladribine Tablets. These trials, which are fully enrolled, will provide additional information on the efficacy and safety of Cladribine Tablets in MS. Top-line results from the CLARITY EXTENSION and ORACLE MS2 studies are expected by the end of 2011. Top-line results from the ONWARD3 study are expected in the first half of 2012.
Cladribine Tablets are approved and available under the trade name Movectro® in Australia and Russia as a treatment of relapsing-remitting MS and are under regulatory review in other countries.
1 CLARITY: CLAdRIbine Tablets treating MS orallY
2 ORACLE MS: ORAl CLadribine in Early MS
3 ONWARD: Oral Cladribine added oN to interferon beta-1a in patients With Active Relapsing Disease
About Cladribine Tablets
Merck Serono's oral formulation of cladribine (Cladribine Tablets) is an investigational treatment for patients with relapsing forms of multiple sclerosis (MS). Cladribine is a small molecule that may interfere with the behavior and the proliferation of certain white blood cells, particularly lymphocytes, which are thought to be involved in the pathological process of MS. Cladribine Tablets were approved in Russia in July 2010 and in Australia in September 2010 as a treatment of relapsing-remitting MS and are under regulatory review in other countries.
The clinical development program for Cladribine Tablets includes:
- The CLARITY (CLAdRIbine Tablets treating MS orallY) study and its extension: a two-year Phase III placebo-controlled trial designed to evaluate the efficacy and safety of Cladribine Tablets as a monotherapy in patients with relapsing-remitting MS and the CLARITY EXTENSION two-year Phase III study designed to provide data on the long-term safety and efficacy of extended administration of Cladribine Tablets for up to four years.
- The ORACLE MS (ORAl CLadribine in Early MS) study: a two-year Phase III placebo-controlled trial designed to evaluate the efficacy and safety of Cladribine Tablets as a monotherapy in patients at risk of developing MS (patients who have experienced a first clinical event suggestive of MS). This trial was announced in September 2008.
- The ONWARD (Oral Cladribine added oN to interferon beta-1a in patients With Active Relapsing Disease) study: a Phase II placebo-controlled trial designed primarily to evaluate the safety and tolerability of adding Cladribine Tablets treatment to patients with relapsing forms of MS, who have experienced breakthrough disease while on established interferon-beta therapy. This trial was announced in January 2007.
- The PREMIERE (PRospective observational long-term safEty registry of Multiple sclerosis patIEnts who have participated in CladRibinE clinical trials) registry: an eight-year observational safety registry of patients who have participated in Cladribine Tablets clinical trials, designed to support the evaluation of the long-term safety of Cladribine Tablets in MS.
About multiple sclerosis
Multiple sclerosis (MS) is a chronic, inflammatory condition of the central nervous system and is the most common, non-traumatic, disabling neurological disease in young adults. It is estimated that approximately two million people have MS worldwide. While symptoms can vary, the most common symptoms of MS include blurred vision, numbness or tingling in the limbs and problems with strength and coordination. The relapsing forms of MS are the most common.
On January 21, 2011, the European Medicines Agency's or EMA Committee for Medicinal Products for Human Use (CMPH) - the European version of our FDA - rejected Merck's application for marketing approval of Cladribine (Movectro) for use in patients with MS.
Below is Merck's press release as published on Fierce Biotech.
Merck Receives Complete Response Letter From FDA on Cladribine Tablets New Drug Application
By Erica Teichert
Created Mar 2 2011 - 9:08am
Darmstadt, Germany, March 2, 2011 - Merck KGaA announced today that it received a complete response letter from the U.S. Food and Drug Administration (FDA) on the new drug application (NDA) for Cladribine Tablets, Merck's proprietary investigational oral formulation of cladribine, as a therapy for relapsing-remitting multiple sclerosis (MS).
A complete response letter (CRL) is issued by the FDA when the agency's review of a file is complete and the application cannot be approved in its present form. In the complete response letter, the FDA concluded that substantial evidence of Cladribine Tablets' effectiveness was provided by the CLARITY1 study. However, the FDA has requested the Company provide an improved understanding of safety risks and the overall benefit-risk profile either through additional analyses or by additional studies. Merck intends to request an end-of-review meeting with the FDA to clarify next steps and to identify whether data from completed and ongoing clinical studies can address the Agency's questions.
"Our commitment to transform the way people living with MS approach their therapy options remains steadfast," said Fereydoun Firouz, President and CEO of Merck's U.S. subsidiary EMD Serono, Inc. "We look forward to working with the FDA to address the safety issues in its letter and will continue to move toward identifying a potential path that provides patients and physicians the opportunity to have access to Cladribine Tablets in the treatment of MS."
Merck remains committed to completing the ongoing clinical trials with Cladribine Tablets. These trials, which are fully enrolled, will provide additional information on the efficacy and safety of Cladribine Tablets in MS. Top-line results from the CLARITY EXTENSION and ORACLE MS2 studies are expected by the end of 2011. Top-line results from the ONWARD3 study are expected in the first half of 2012.
Cladribine Tablets are approved and available under the trade name Movectro® in Australia and Russia as a treatment of relapsing-remitting MS and are under regulatory review in other countries.
1 CLARITY: CLAdRIbine Tablets treating MS orallY
2 ORACLE MS: ORAl CLadribine in Early MS
3 ONWARD: Oral Cladribine added oN to interferon beta-1a in patients With Active Relapsing Disease
About Cladribine Tablets
Merck Serono's oral formulation of cladribine (Cladribine Tablets) is an investigational treatment for patients with relapsing forms of multiple sclerosis (MS). Cladribine is a small molecule that may interfere with the behavior and the proliferation of certain white blood cells, particularly lymphocytes, which are thought to be involved in the pathological process of MS. Cladribine Tablets were approved in Russia in July 2010 and in Australia in September 2010 as a treatment of relapsing-remitting MS and are under regulatory review in other countries.
The clinical development program for Cladribine Tablets includes:
- The CLARITY (CLAdRIbine Tablets treating MS orallY) study and its extension: a two-year Phase III placebo-controlled trial designed to evaluate the efficacy and safety of Cladribine Tablets as a monotherapy in patients with relapsing-remitting MS and the CLARITY EXTENSION two-year Phase III study designed to provide data on the long-term safety and efficacy of extended administration of Cladribine Tablets for up to four years.
- The ORACLE MS (ORAl CLadribine in Early MS) study: a two-year Phase III placebo-controlled trial designed to evaluate the efficacy and safety of Cladribine Tablets as a monotherapy in patients at risk of developing MS (patients who have experienced a first clinical event suggestive of MS). This trial was announced in September 2008.
- The ONWARD (Oral Cladribine added oN to interferon beta-1a in patients With Active Relapsing Disease) study: a Phase II placebo-controlled trial designed primarily to evaluate the safety and tolerability of adding Cladribine Tablets treatment to patients with relapsing forms of MS, who have experienced breakthrough disease while on established interferon-beta therapy. This trial was announced in January 2007.
- The PREMIERE (PRospective observational long-term safEty registry of Multiple sclerosis patIEnts who have participated in CladRibinE clinical trials) registry: an eight-year observational safety registry of patients who have participated in Cladribine Tablets clinical trials, designed to support the evaluation of the long-term safety of Cladribine Tablets in MS.
About multiple sclerosis
Multiple sclerosis (MS) is a chronic, inflammatory condition of the central nervous system and is the most common, non-traumatic, disabling neurological disease in young adults. It is estimated that approximately two million people have MS worldwide. While symptoms can vary, the most common symptoms of MS include blurred vision, numbness or tingling in the limbs and problems with strength and coordination. The relapsing forms of MS are the most common.
Tuesday, March 1, 2011
How Are You Using Technology for Health?
If you are reading this, then you use technology (your computer) for health reasons. Interacting on health-related blogs and in forums are ways in which people have been using online technologies for years.
But do we know how people are using these and other technologies? WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.
I completed the survey and suggest that you do the same (if you are interested). The survey which closes on Friday, March 4, 2011 will take about 10 minutes (you can stop anytime & come back later).
All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards. Everyone will receive a report on the survey findings.
This survey won’t be open much longer, so jump in now!
Take WEGO Health’s Health Technology Survey: http://svy.mk/eJvSow
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