This week TEVA Pharmaceutical Inc announced that the FDA has approved the new 40mg/mL formulation of Copaxone (glatiramer acetate) designed to be injected subcutaneously three-times-a week. Although TEVA hopes to transition current daily Copaxone users to the new formula, the original 20mg/mL formula will continue to be available, even after it goes off patent in May 2014 and faces generic competition from Mylan Inc. The safety and efficacy of the longer-lasting dosing was demonstrated in the GALA study, results published in Annals of Neurology (Ann Neurol. 2013 Jun;73(6):705-13. doi: 10.1002/ana.23938. Epub 2013 Jun 28.) Copaxone is prescribed for the treatment of relapsing-remitting MS to reduce the number of clinical exacerbations; and for patients who have experienced a first clinical episode and have MRI features consistent with MS.
Read this post in its entirety:
Hot Topics and MS Research News: January 2014
Friday, January 31, 2014
Tuesday, January 28, 2014
Tending to Your Emotional Health
Winter has been cold this year!! Brrrrr…… “Stay warm” seems to have become the universal salutation around here. Staying warm is not something which we normally have to worry about inside the house; however, a few weeks ago we had an emergency at home which took out our heating system with one big crash in the basement.
We live in an old house with an ancient hot water radiator system. It’s a low maintenance system that does a pretty good job keeping the house warm even with our drafty windows. There’s not much we have to do besides bleed the radiators occasionally to release pockets of air that collect at the top of each radiator. If enough air builds up, heated water cannot freely flow through the pipes and the radiator’s heating may be sub-optimum.
The big crash came from the overflow water tank, which was hanging from the ceiling in the basement above the boiler, tumbling down and taking out some of the pipes in the process. Water proceeded to drain from the radiator system and flood the basement. By the time the boiler/heater repairman arrived, temperatures in the house were slowly dropping on a late Friday evening. It was about to get really cold inside the house.
Read this post in its entirety:
Living Well: Releasing the Emotional Air Bubbles
We live in an old house with an ancient hot water radiator system. It’s a low maintenance system that does a pretty good job keeping the house warm even with our drafty windows. There’s not much we have to do besides bleed the radiators occasionally to release pockets of air that collect at the top of each radiator. If enough air builds up, heated water cannot freely flow through the pipes and the radiator’s heating may be sub-optimum.
The big crash came from the overflow water tank, which was hanging from the ceiling in the basement above the boiler, tumbling down and taking out some of the pipes in the process. Water proceeded to drain from the radiator system and flood the basement. By the time the boiler/heater repairman arrived, temperatures in the house were slowly dropping on a late Friday evening. It was about to get really cold inside the house.
Read this post in its entirety:
Living Well: Releasing the Emotional Air Bubbles
Tuesday, January 21, 2014
Winter Wonderland 2014
In the middle of the snow, Rob took a little walk around the neighborhood. He wasn't the only one. Dogs were out in full force, as were sledders. The creek looks so serene.
Approaching the house, it always amazes me to see how tall our blue spruce has grown in 13 years. Previously, it barely reached the porch roof. Now it towers over the house. Beautiful! More snow is coming down.
Approaching the house, it always amazes me to see how tall our blue spruce has grown in 13 years. Previously, it barely reached the porch roof. Now it towers over the house. Beautiful! More snow is coming down.
Monday, January 20, 2014
Complementary and Alternative Medicine (CAM) and MS
The National MS Society (NMSS) reports that approximately 75% of people
with MS use one form or another of CAM, generally in combination with
prescribed disease-modifying treatments. CAM use and MS has not been
researched extensively in controlled clinical trials, but there are
small studies which show some benefit of specific interventions. The terms complementary and alternative indicate the way in which these
unconventional therapies are used - complementary therapies are used in
conjunction with conventional medicine, while alternative therapies are
used instead of conventional medicine. Common forms of CAM include use
of exercise, dietary supplements, herbal medicine, mind-body practices,
yoga, and acupuncture.
Read this post in its entirety:
Living with MS: Complementary and Alternative Medicine
Read this post in its entirety:
Living with MS: Complementary and Alternative Medicine
Thursday, January 16, 2014
What Causes the MS Hug?
One particularly mysterious occurrence of MS pain, nicknamed the “MS Hug,” is often described as a banding sensation or girdle pain surrounding the torso. While articles of clothing such as girdles, corsets, or Spanx have been used to shape a woman’s torso for years, the MS Hug tends to cloak an individual in pain. Some people in the online community have referred to the MS Hug as the “Squeeze o’ Death.”
Available explanations of the cause of the MS hug vary. The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia). Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around. Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may differ from one episode to the next.
One particularly mysterious occurrence of MS pain, nicknamed the “MS Hug,” is often described as a banding sensation or girdle pain surrounding the torso. While articles of clothing such as girdles, corsets, or Spanx have been used to shape a woman’s torso for years, the MS Hug tends to cloak an individual in pain. Some people in the online community have referred to the MS Hug as the “Squeeze o’ Death.”
Available explanations of the cause of the MS hug vary. The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia). Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around. Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may differ from one episode to the next.
Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs (e.g. Neurontin, Lyrica, Tegretol), corticosteroids and topical agents (e.g. capsaicin, lidocaine, menthol cream), anti-spasticity drugs (e.g. baclofen, Zanaflex), or benzodiazepines (e.g. Valium). Antidepressant agents (e.g. Elavil, Cymbalta) and opioids may help to modulate the experience of pain.
Read this post in its entirety:
What is the MS Hug?: A HealthCentral Explainer
Available explanations of the cause of the MS hug vary. The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia). Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around. Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may differ from one episode to the next.
One particularly mysterious occurrence of MS pain, nicknamed the “MS Hug,” is often described as a banding sensation or girdle pain surrounding the torso. While articles of clothing such as girdles, corsets, or Spanx have been used to shape a woman’s torso for years, the MS Hug tends to cloak an individual in pain. Some people in the online community have referred to the MS Hug as the “Squeeze o’ Death.”
Available explanations of the cause of the MS hug vary. The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia). Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around. Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may differ from one episode to the next.
Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs (e.g. Neurontin, Lyrica, Tegretol), corticosteroids and topical agents (e.g. capsaicin, lidocaine, menthol cream), anti-spasticity drugs (e.g. baclofen, Zanaflex), or benzodiazepines (e.g. Valium). Antidepressant agents (e.g. Elavil, Cymbalta) and opioids may help to modulate the experience of pain.
Read this post in its entirety:
What is the MS Hug?: A HealthCentral Explainer
Wednesday, January 15, 2014
During My RA Diagnosis
As a newly diagnosed patient, my first concern was to stop the current pain and try to reverse some of the minor deformity (specifically a boutonniere finger). I quickly began treatment with triple therapy, a combination of methotrexate, sulfasalazine, and hydroxychloroquine (which I didn’t take for very long due to side-effects). I also began seeing an occupational therapist to learn joint protection techniques and to receive therapy for my hands and fingers. By the way, warm paraffin dips feel lovely and sleeping with pressure gloves on reduces some of the swelling which occurs at night. Those few first months were very encouraging as I began to see and feel improvements. I still practice some of the exercises my hand therapist taught me to protect hand function and to maintain strength and agility.
Finally, stage 4 of my journey was the time that I connected with patients in online communities and researched all treatment options. Prior to diagnosis or initial treatment decisions, I had not jumped right in and immersed myself in the world of RA. I had blindly followed the advice of my rheumatologist while I did make the small request to “do something about my deformed fingers.” My doctor is the one who guided treatment choices and sent me to someone who could teach me one-on-one about how I could better care for myself for the longterm.
Read this post in its entirety:
My RA Journey: The Stages Before and After Diagnosis
Finally, stage 4 of my journey was the time that I connected with patients in online communities and researched all treatment options. Prior to diagnosis or initial treatment decisions, I had not jumped right in and immersed myself in the world of RA. I had blindly followed the advice of my rheumatologist while I did make the small request to “do something about my deformed fingers.” My doctor is the one who guided treatment choices and sent me to someone who could teach me one-on-one about how I could better care for myself for the longterm.
Read this post in its entirety:
My RA Journey: The Stages Before and After Diagnosis
The Poor Neglected Blog
Yes, I am still here. I have received several message lately from bloggers and dear online friends who are concerned that everything is okay. Life has been very busy and it seems like there's a never-ending supply of tasks piled in front of me.
I have still been writing lots of posts but they've been published on other websites such HealthCentral.com or MultipleSclerosis.net. So I've gone back and created more of the "read this post in its entirety" posts with links to some of that material.
2013 was an extraordinarily busy year with regards to writing, editing, and helping to launch a couple of websites. Last winter, I spent almost 2 months reading, editing, and commenting on the entire core contents of MultipleSclerosis.net before it launched in March. That was over 150 articles. I began blogging for the website as well as helping to moderate their Facebook page and forum.
During the summer, I traveled several times with a team from HealthCentral to represent the Patient Experts and writers. Then, I was asked to read, edit, and comment on all of the core content for RheumatoidArthritis.net. September ended with a trip to New York City to participate at the 10th Annual Advertising Week conference. I was one of only a handful of non-advertising professionals to present during the week.
In October, Rob and I celebrated our 1st anniversary and we've been making improvements around the house. Sometime I should share the story about how our boiler broke, flooded the basement, and that it took several weeks for the radiators to refill with water to heat the house. Brrrrrr. Now the radiators are working better than ever, it seems.
So much stuff going on that the blog was been neglected. I hope that you will forgive me to back-dating some posts and flooding Twitter and Facebook with links as they get published.
In addition to the blog here being neglected, the Carnival of MS Bloggers hasn't published since October either. If you have anything you'd like to submit, please feel free to email me (link at bottom of each edition). We almost made it 6 years without missing an edition since establishing the Carnival at the end of 2007. Hard to believe that I've been talking and writing about MS, RA, health policy, and patient education and empowerment for so many years.
Thank you for making the MS blogging community the vibrant community that it is today.
I have still been writing lots of posts but they've been published on other websites such HealthCentral.com or MultipleSclerosis.net. So I've gone back and created more of the "read this post in its entirety" posts with links to some of that material.
2013 was an extraordinarily busy year with regards to writing, editing, and helping to launch a couple of websites. Last winter, I spent almost 2 months reading, editing, and commenting on the entire core contents of MultipleSclerosis.net before it launched in March. That was over 150 articles. I began blogging for the website as well as helping to moderate their Facebook page and forum.
During the summer, I traveled several times with a team from HealthCentral to represent the Patient Experts and writers. Then, I was asked to read, edit, and comment on all of the core content for RheumatoidArthritis.net. September ended with a trip to New York City to participate at the 10th Annual Advertising Week conference. I was one of only a handful of non-advertising professionals to present during the week.
In October, Rob and I celebrated our 1st anniversary and we've been making improvements around the house. Sometime I should share the story about how our boiler broke, flooded the basement, and that it took several weeks for the radiators to refill with water to heat the house. Brrrrrr. Now the radiators are working better than ever, it seems.
So much stuff going on that the blog was been neglected. I hope that you will forgive me to back-dating some posts and flooding Twitter and Facebook with links as they get published.
In addition to the blog here being neglected, the Carnival of MS Bloggers hasn't published since October either. If you have anything you'd like to submit, please feel free to email me (link at bottom of each edition). We almost made it 6 years without missing an edition since establishing the Carnival at the end of 2007. Hard to believe that I've been talking and writing about MS, RA, health policy, and patient education and empowerment for so many years.
Thank you for making the MS blogging community the vibrant community that it is today.
Sunday, January 12, 2014
MS Risk: Alcohol Consumers and Smokers versus Teetotalers
In a report issued last week, researchers from the Karolinska Institutet
(Stockholm, Sweden) revealed that drinking low levels of alcohol has
little to no effect on the risk of developing MS, while drinking higher
levels of alcohol may actually protect against the development of MS.
The possible association of alcohol consumption and risk of MS has been
previously studied as part of two case-control studies and one
prospective study with inconsistent results. Using large
population-based studies, authors of the current report investigated the
possible association of alcohol consumption and MS and related that
association to the effects of smoking—a known risk factor in developing
MS.
Read this post in its entirety:
Alcohol Consumption and MS Risk: Less Alcohol is Not Necessarily Better For You
Read this post in its entirety:
Alcohol Consumption and MS Risk: Less Alcohol is Not Necessarily Better For You
Thursday, January 2, 2014
Carnival of MS Bloggers #151
Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.
by Jamie of The Tousled Apostle
Ten years is kind of a big deal.
it’s a marriage that has lasted a decade or an object that stands the test of time, when something makes it to the ten-year mark, it’s worth celebrating. And that’s precisely what I’m doing tonight. Wayne is out playing a gig with the Peachtree Jazz Edition, and I’m relaxing in our beautiful home. A fire is crackling in my living room, Debussy is playing on the radio, and I’m curled up in my pajamas, cozy as a cat.
Ten years ago, things weren’t quite so copacetic.
On the evening of January 25, 2004, I was writhing in a hospital bed, suffering from a spinal headache I’d gotten from a spinal tap I’d undergone that afternoon. In the throes of that searing pain, my neurologist came in and told me, “You have MS. It’s not the end of the world. You can find more information on the Internet than I could ever tell you. Good night.” I’m not kidding; that’s all I got from him. After he’d left, we asked the nurse to call him and prescribe a pill for my headache. Both Wayne and I had been too shocked to ask when he was there.
A word of advice—NEVER look up a health question on the web. For Gregory House, M.D., everything inexplicable had to be lupus. For the Internet, it’s cancer and certain death.
Well, we did look it up, and we got the absolute worst case scenario for an MS patient. After an hour of scouring the web looking for a scrap of good news and bawling like babies, Wayne slammed the laptop closed and told me, “That’s enough.” That night, I was convinced that I’d never have a normal life ever again. And in some ways, I was right. I’ve not been the same since that day, and that’s a good thing.
The eight year anniversary, which I wrote about here, was a big milestone for me. It seemed like an unreachable date, and now here I am, two years beyond what once seemed impossible. I’ve since learned to use that word sparingly, if at all. Why? Because, as Matthew 19:26 tells us, “with God all things are possible.” He proves that to me on a daily basis.
The MS was just the first body blow in a five-year boxing match with life. I won’t go into the sad details here, but let’s just say that pretty much everything that could go wrong—short of one of us dying—did. But, as the speaker in Langston Hughes’ poem “Mother to Son” says, “I’se still goin’, honey, / I’se still climbin’, / And life for me ain’t been no crystal stair.”
The Family at Christmas 2012
Today, life isn’t without challenges, but there’s no cause for complaint. It’s not because I’m a saint; I’ve just learned that every difficulty has a reason. I know it because God has used the last ten years in a mighty way and transformed me into a usable vessel. But no matter what hardships happen, I know I’m far more blessed than I deserve. I have a wonderful husband who I adore, a loving family, a comfortable, safe home, an amazing job, and friends out the wazoo. I also recently became an aunt. (See adorable picture below for visual confirmation of the poo-dubber in question.)
Me with the lovely Miss Beatrix
I didn’t earn these blessings; they were freely given to me by my God. He has bestowed it all on me with a loving, liberal hand, and my life is marked by his loving-kindness. And tonight, as I sit nestled in my home, I can tell you the words of Isaiah 41:10 are true and trustworthy: “Do not fear, for I am with you. Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.” I can say they’re true because I learned to say it when the prognosis wasn’t as good, when the place I called home was a crummy apartment, and when I basically felt like Job sitting on the ash heap. And if he sees fit to take it all away tomorrow, I can say, “Yes, God is still good.”
I recently watched an episode of the BBC’s Call the Midwife in which the narrator says, “Health is the greatest of God’s gifts, but we take it for granted. It hangs on a thread as fine as a spider’s web, and the smallest thing can make it snap, leaving the strongest of us helpless in an instant. And in that instant, hope is our protector and love our panacea.”
Those words resonated with me because I’ve know what it feels like when that gossamer string snaps and you free fall into the unknown. I know what it is like when your body betrays you and you realize death and decay are eager to strip away what they can with their spiny fingers. However, I choose not to dwell on such things and live a life marked by hope and love instead. I count it all joy.
That’s something God made possible, and that’s the reason why I’m looking forward to the next ten years.
This concludes the 151st edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 6, 2014. 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, February 4, 2014.
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