November 2014 Round-Up of MS News and Research

• Details of PML Death to be Added to Tecfidera Prescription Label
• FDA Reverses Previous Rejection and Approves MS Drug Lemtrada
• New Italian Study: Azathioprine is Not Inferior to Beta Interferon in Treating RRMS
• Other Studies of Interest

Read this post in its entirety:
Hot Topics and MS Research News for November 2014

Carnival of MS Bloggers #162

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Suffering Disappears, Love Remains

by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII

My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA

Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945

That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s

Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver

My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s

The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s

With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

Please Join Me at iConquerMS™

by Lisa Emrich at Brass and Ivory

This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 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, December 2, 2014.

Comments for this post.

Please Join Me at iConquerMS™

The news is out!! The Accelerated Cure Project for MS (ACP), a nonprofit organization based in Boston that was started in 2001 by a person living with MS, has launched an exciting new patient-centered research initiative called iConquerMS™.

iConquerMS™is a Multiple Sclerosis Patient-Powered Research Network (MS-PPRN) established with a grant from the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. PCORI’s mission is to fund research that will provide patients, caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

What is iConquerMS™?

The iConquerMS™ initiative is a novel way for you and me and all of us living with MS to work together to fight multiple sclerosis. It provides one centralized location where people with MS are empowered and enabled to securely contribute their health data, connect with others, and submit ideas to advance research.

Each of us is the expert on how MS affects our body and our lives. We have the information and data which researchers need to look for patterns. Each piece of data when combined with hundreds of thousands of other pieces of data becomes what is known as ‘Big Data’ and iConquerMS™ aims to amass the largest single source of combined data regarding MS in the world to date.

How is iConquerMS™ different?

At the heart of iConquerMS™ are people living with this disease, from those with the initial concept, to members of the Governing Board and Committees, to the participants who will contribute their ideas, experience, and data. iConquerMS™ is unique in that it is endorsed and supported by all major MS organizations in the United States, including NMSS, MSF, MSAA, and CanDoMS. Leaders from each organization have joined MS patients, researchers, and experts in the field to serve on iConquerMS™ Committees and Governing Board.

As an MS patient advocate, I am proud to serve as Chair of the Communications Committee for iConquerMS™. When you check out the website at iconquerms.org, you may recognize many familiar names and faces of fellow MSers also serving as committee members and staunch supporters of the initiative.

How can you contribute to iConquerMS™?

Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records.

Enter your demographic data and complete surveys about life with MS. Currently there are four surveys available which took me about 20 minutes to complete after I registered. You may have completed similar surveys for your doctor or other research initiatives. Don’t worry about time, you can always take a break when you need to and come back to complete surveys later.

Share your electronic health records (EHRs), which can be as small as a single laboratory report or as complex as a complete medical history. No bit of data is too small or insignificant and you choose what to share. Detailed instructions are available, but you can always contact someone at iConquerMS™ for help if you have any questions or get stuck.

Submit your questions of what you think researchers should take a closer look at. (This is probably my favorite part.) The research committee, composed of people with MS and key scientists, will sort through our questions, formulate formal research queries, and design the tools to answer those questions.

Share your experiences with iConquerMS™ with everyone you know! We are aiming for more than 20,000 registered participants by next summer. It’s a huge number, I know, but only a fraction of the number of MS patients in the US. We need your help to spread the word and recruit others like yourself who want to help conquer MS.

Connect with others. Later in December, iConquerMS™ will launch a forum for MS patients to discuss any number of topics related to multiple sclerosis and research. You will also receive periodic updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests.

Please Join Me Now at iConquerMS.org and Register Today!




Read this post in its entirety:
The Accelerated Cure Project Launches iConquerMS™, A Patient-Centered Research Initiative

Better Living with MS: Manage the Clutter

Recently I read an article in the International Journal of MS Care that hit home, “Clutter Management for Individuals with Multiple Sclerosis” by Jennifer Tamar Kalina from the MS Care Center of the New York University Langone Medical Center, New York. In the article, Ms. Kalina discusses the clutter management group program which has been offered at their MS Center for over 8 years. She describes in detail how incorporating clutter management interventions into MS care programs can enhance the quality of life and functional independence of people living with the disease.

Clutter has a profound impact on individuals living with chronic diseases such as MS, with detrimental effects on physical, financial, social, emotional, and cognitive functioning. Many common MS symptoms, such as decreased mobility, visual or cognitive impairment, fatigue, and depression, may contribute to clutter accumulation as well. Clutter removal interventions may increase patients’ participation in vocational and leisure activities, social pursuits, and other meaningful occupations.

Read this post in its entirety:
Clutter Management for MS Patients

Lemtrada (alemtuzumab) Approved by the FDA for Relapsing-Remitting MS in the US

The FDA approves Lemtrada for the treatment of relapsing-remitting MS. Read the press release below. The drug will be priced at $158,000 for two courses of treatment over two years, reports The Boston Globe. Lemtrada is administered by infusion over 5 consecutive days followed by infusions given over 3 consecutive days 12 months later. The Boston Globe continues, "Rebif, a competing drug compared with Lemtrada in clinical studies, costs $134,600 for a similar treatment regimen, or 17 percent less. But the Genzyme executives pointed out that patients on Lemtrada suffered 50 percent fewer relapses than those taking the other drug."

Genzyme’s Lemtrada Approved by the FDA

November 14, 2014

- Approval Establishes Genzyme’s MS Franchise in the U.S. with Two Approved Products; Follows Global Approvals -

Genzyme, a Sanofi company, announced today that the U.S. Food and Drug Administration (FDA) has approved Lemtrada^TM (alemtuzumab) for the treatment of patients with relapsing forms of multiple sclerosis (MS). Because of its safety profile, the use of Lemtrada should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.

“Today’s approval is the culmination of more than a decade of work by Genzyme to develop Lemtrada,” said Genzyme President and CEO, David Meeker. “Lemtrada demonstrated superior efficacy over Rebif on annualized relapse rates in the two studies which were the basis for approval. A comprehensive risk evaluation and mitigation strategy (REMS) will be instituted in order to help detect and manage the serious risks identified with treatment.”

The FDA approval of Lemtrada is based on two pivotal randomized Phase III open-label rater-blinded studies comparing treatment with Lemtrada to Rebif^®(high-dose subcutaneous interferon beta-1a) in patients with relapsing remitting MS who were either new to treatment (CARE-MS I) or who had relapsed while on prior therapy (CARE-MS II).

In CARE-MS I, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates; the difference observed in slowing disability progression did not reach statistical significance. In CARE-MS II, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates, and accumulation of disability was significantly slowed in patients given Lemtrada vs. interferon beta-1a. The clinical development program for Lemtrada involved nearly 1,500 patients with more than 6,400 patient-years of safety follow-up.

“The unmet need in MS remains high,” said Edward Fox, M.D., Ph.D., Director of the Multiple Sclerosis Clinic of Central Texas. “It is a great day for people living with relapsing forms of MS in the United States, who will now have access to this new meaningful treatment”.

The Lemtrada label includes a boxed warning noting a risk of serious, sometimes fatal autoimmune conditions, serious and life-threatening infusion reactions and also noting Lemtrada may cause an increased risk of malignancies including thyroid cancer, melanoma and lymphoproliferative disorders.

Lemtrada is only available through a restricted distribution program, the Lemtrada REMS (Risk Evaluation and Mitigation Strategy). This program has been developed to ensure that access to Lemtrada in the U.S. is only through certified prescribers, healthcare facilities and specialty pharmacies and to also ensure that patients are enrolled in the REMS program. The program is intended to help educate healthcare providers and patients on the serious risks associated with Lemtrada and the appropriate periodic monitoring required to support the detection of these risks for 48 months after the last infusion. The REMS is based on a developmental risk management program that was successfully implemented in the Phase 2 and Phase 3 trials and allowed for early detection and management of some of the serious risks associated with Lemtrada.

“The FDA approval of Lemtrada is a significant milestone for people living with relapsing MS in the United States,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “We are pleased that the voices of the MS community have been recognized and that people with relapsing MS will now have access to a new, needed treatment option.”

Lemtrada has a unique dosing and administration schedule of two annual treatment courses. The first treatment course is administered via intravenous infusion on five consecutive days, and the second course is administered on three consecutive days, 12 months later.

The most common side effects of Lemtrada are rash, headache, pyrexia, nasopharyngitis, nausea, urinary tract infection, fatigue, insomnia, upper respiratory tract infection, herpes viral infection, urticaria, pruritus, thyroid gland disorders, fungal infection, arthralgia, pain in extremity, back pain, diarrhea, sinusitis, oropharyngeal pain, paresthesia, dizziness, abdominal pain, flushing, and vomiting. Other serious side effects associated with Lemtrada include autoimmune thyroid disease, autoimmune cytopenias, infections and pneumonitis.

First approved in September 2013 in the European Union, Lemtrada is approved in more than 40 countries. Additional marketing applications for Lemtrada are under review by regulatory agencies around the world.

The FDA approval of Lemtrada marks Genzyme’s second MS treatment approval in the United States. Genzyme received FDA approval of its once-daily, oral Aubagio^® (teriflunomide) for the treatment of relapsing forms of MS in September 2012. Aubagio is approved in more than 50 countries, and is under review by additional regulatory agencies. Between clinical trials and commercial use, approximately 30,000 patients have been treated with Aubagio.

Multiple sclerosis is estimated to affect more than 2.3 million people globally. There are approximately 400,000 people living with MS in the United States.

Important Safety Information About Lemtrada for U.S. Patients

Serious and life-threatening autoimmune conditions such as immune thrombocytopenia (ITP) and anti-glomerular basement membrane disease can occur in patients receiving Lemtrada. Monitor complete blood counts with differential, serum creatinine levels, and urinalysis with urine cell counts at periodic intervals in patients who receive Lemtrada. Lemtrada is associated with serious and life-threatening infusion reactions. Lemtrada can only be administered in certified healthcare settings that have on-site access to equipment and personnel trained to manage anaphylaxis and serious infusion reactions. Lemtrada may be associated with an increased risk of malignancy, including thyroid cancer, melanoma and lymphoproliferative disorders. The Lemtrada REMS Program, a comprehensive risk management program with frequent monitoring, is being implemented to help mitigate these serious risks.

The Lemtrada label includes a boxed warning noting a risk of serious, sometimes fatal autoimmune conditions, serious and life-threatening infusion reactions and also noting Lemtrada may cause an increased risk of malignancies including thyroid cancer, melanoma and lymphoproliferative disorders. Lemtrada is contraindicated in patients with Human Immunodeficiency Virus (HIV) infection.

U.S. Indication and Usage

Lemtrada is indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS). Because of its safety profile, the use of Lemtrada should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.

Please click here for full U.S. Prescribing Information for Lemtrada, including boxed warning and contraindications.

As part of its continued commitment to MS patients, Genzyme’s MS One to One® program will provide information about multiple sclerosis, Lemtrada and other relevant resources. MS One to One is available and staffed by dedicated MS nurses and highly trained representatives who can provide support for individuals living with MS, their health care providers, family and loved ones. For more information about these support services, call the MS One to One line at 1-855-MSOne2One (1-855-676-6326) Monday through Friday, from 8:30am – 8:00pm ET. Information and support are also available atwww.MSOnetoOne.com.

About Lemtrada™ (alemtuzumab)

Alemtuzumab is a monoclonal antibody that targets CD52, a protein abundant on T and B cells. Circulating T and B cells are thought to be responsible for the damaging inflammatory process in MS. Alemtuzumab depletes circulating T and B lymphocytes after each treatment course. Lymphocyte counts then increase over time with a reconstitution of the lymphocyte population that varies for the different lymphocyte subtypes.

In CARE-MS I, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rate (0.18 for Lemtrada and 0.39 for interferon beta-1a (p<0 -6.5="" .0001="" 1-a="" 11="" 30="" 55="" 59="" 78="" a="" and="" at="" baseline="" beta-1a="" beta="" change="" did="" difference="" disability="" for="" from="" in="" interferon="" lemtrada="" lesion="" not="" observed="" of="" p="0.31).<u" patients="" percent.="" percent="" progression="" proportion="" reach="" reduction.="" reduction="" relapse-free="" relative="" remaining="" risk="" significance="" statistical="" t2="" the="" two="" volume="" vs.="" was="" with="" year="">

In CARE-MS II, Lemtrada was significantly more effective than interferon beta-1a at reducing annualized relapse rates (0.26 for Lemtrada and 0.52 for interferon beta 1-a, p<0 -1.2="" .0001="" 1-a="" 21="" 42="" 47="" 49="" 65="" a="" and="" at="" baseline="" beta-1a="" beta="" change="" confirmed="" did="" disability="" for="" from="" in="" interferon="" lemtrada="" lesion="" lower="" not="" of="" p="0.14).<u" patients="" percent="" progression="" proportion="" reach="" reduction.="" reduction="" relapse-free="" relative="" remaining="" risk="" significance="" significantly="" six-month="" statistical="" t2="" the="" two="" volume="" vs.="" was="" with="" year="">

Genzyme holds the worldwide rights to alemtuzumab and has responsibility for its development and commercialization in multiple sclerosis. Bayer Healthcare receives contingent payments based on global sales revenue.

About Aubagio^® (teriflunomide)

Aubagio is an immunomodulator with anti-inflammatory properties. Although the exact mechanism of action for Aubagio is not fully understood, it may involve a reduction in the number of activated lymphocytes in the central nervous system (CNS). Aubagio is supported by one of the largest clinical programs of any MS therapy, with more than 5,000 trial participants in 36 countries. Some patients in extension trials have been treated for up to 10 years.

U.S. Indication and Usage

Aubagio (teriflunomide) is a once-daily, oral therapy indicated for the treatment of adult patients with relapsing forms of multiple sclerosis. The recommended dose of Aubagio is 7 mg or 14 mg orally once-daily.

Important Safety Information About Aubagio for U.S. Patients

The Aubagio label includes the risk of hepatotoxicity and, teratogenicity (based on animal data). In the United States, this information can be found in the boxed warning.

In MS clinical studies with Aubagio, the incidence of serious adverse events were similar among Aubagio and placebo-treated patients. Serious events may include decreased white blood cell count, peripheral neuropathy, hyperkalemia, skin reactions and increased blood pressure. The most common adverse events associated with Aubagio in MS patients included increased ALT levels, alopecia, diarrhea, influenza, nausea and paresthesia.

Teriflunomide is the principal active metabolite of leflunomide, which is indicated in the U.S. for the treatment of rheumatoid arthritis. Severe liver injury including fatal liver failure has been reported in patients treated with leflunomide. ALT should be monitored monthly for at least 6 months in patients who start treatment with Aubagio.

Aubagio is contraindicated in patients with severe hepatic impairment, pregnant women and women of childbearing potential who are not using reliable contraception and in patients who are taking leflunomide. Aubagio is not recommended for breast-feeding women, patients with immunodeficiency states, patients with significantly impaired bone marrow function or significant anemia, leucopenia, neutropenia or thrombocytopenia, patients with severe active infection until resolution, patients with severe renal impairment undergoing dialysis and patients with hypoproteinaemia.

Please click here for full U.S. Prescribing Information for Aubagio, including boxed warning and contraindications.

About Genzyme, a Sanofi Company

Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. We accomplish our goals through world-class research and with the compassion and commitment of our employees. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve. That goal guides and inspires us every day. Genzyme’s portfolio of transformative therapies, which are marketed in countries around the world, represents groundbreaking and life-saving advances in medicine. As a Sanofi company, Genzyme benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients. Learn more atwww.genzyme.com.

About Sanofi

Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients’ needs. Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York (NYSE: SNY).

Genzyme^®, Aubagio^® and MS One to One^® are registered trademarks, and Lemtrada^TM is a trademark of Genzyme Corporation. Rebif^® is a registered trademark of EMD Serono, Inc. All rights reserved.

[Press Release]

Military Service, Multiple Sclerosis, and Veterans Benefits

Did you know that multiple sclerosis (MS) has been associated with military service? 

The Department of Veterans Affairs (VA) recognizes that multiple sclerosis may be classified as a service-connected disability eligible for VA benefits. Includes in the resources section at the end of this article (posted on HealthCentral) are several studies published during the past decade examining aspects of MS diagnosis, symptoms, and treatment in US Veterans.

Established in 2003, the VA MS Centers of Excellence (MSCoeE) is dedicated to furthering the understanding of multiple sclerosis, its impact on Veterans, and effective treatments to help manage MS symptoms. The MSCoE utilizes a network of regional programs, telemedicine, and informatics to improve care for veterans with MS, to enhance MS educations for patients, caregivers and healthcare providers, and to promote research into the causes and treatments of MS.

The VA has provided an easy-to-use clickable map to help you locate the VA MS Specialty Clinic nearest you. The MSCoE also offers monthly MS Caregiver conference calls during which you may network, share experiences, discuss topics related to caregiving, and learn about available resources. Families and caregivers of people with MS are invited to participate on the 4th Monday of every month at 2-3 pm ET by calling 1-800-767-1750, then punch in 43157#. 

I am a Veteran with MS. Am I eligible for disability benefits?

If an individual had symptoms of MS while in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability. In this case, the Veteran should complete the Veterans Application for Compensation and/or Pension available online or at their local medical center. 

If an individual separated from the military more than seven years prior to an MS diagnosis, he/she may still be eligible for disability benefits. In this case, the Veteran must be diagnosed by a healthcare provider, preferably a neurologist who specializes in MS, who directly links symptoms experienced during the first seven years post-separation to the current diagnosis.

To find out if you are eligible for benefits, read the VA eligibility criteria, or call the VA benefits line at 1-800-827-1000. You may also contact Veterans Service Organizations (VSO), such as the Paralyzed Veterans of America, Disabled American Veterans, Veterans of Foreign Wars, and United Spinal Association, for support and assistance.

Keep in mind that the VA continues to provide healthcare services to veterans with MS from the time of diagnosis and throughout their life, regardless of whether their MS has been determined to be service-connected or not.

Read this post in its entirety:
Multiple Sclerosis and the Military - In Honor of Veteran's Day

When is It Time to Change RA Treatments?

Common considerations for altering treatmentAs near remission or low disease activity are common goals of RA treatment plans, signs of disease activity would indicate that your plan may need adjustment. However, minor flare-up of symptoms, such as sudden and temporary increases in painful, swollen, tender or red joints, may indicate the need for corticosteroids to reduce and control inflammation or an increase in the dosage of your current medication. If you have many flare-ups, consider talking to your doctor about adding or changing to a more effective DMARD or biologic.

The early symptoms of RA are also signs that your disease has become more active or that treatment is no longer working. Symptoms such as pain, fatigue, swollen or tender joints, and morning stiffness that lasts longer than 45 minutes, warrant a discussion with your rheumatologist. The return of symptoms may be subtle and not reach the same intensity you experienced before diagnosis, so you may not think to bring this up to your doctor, but you should.

New symptoms often indicate increased disease activity. Definitely tell your doctor when you’ve noticed that RA symptoms seem to have spread to other parts of your body or are behaving differently than they have in the past. If RA previously only affected your hands and now you notice new problems with your shoulders or knees, or you experience painful breathing or heart arrhythmias, or anything else unusual, call your doctor without delay.

Other signs of disease activity, such as laboratory results that indicate high levels of inflammation (such as increased SED rate or C-reactive protein levels) or x-rays showing additional joint damage, may also indicate that your current treatment plan is no longer effective. Your doctor should periodically measure you for signs of disease activity and document them in your medical record for future reference.

Increased risk of infection is a potential side-effect of a number of RA medications. If you are experiencing more infections or changes in white blood cell counts, your doctor may suggest a change in medication. Complications of infection can quickly become rather serious. In addition, there are some drugs, such as methotrexate, which your doctor may want you to skip while you use antibiotics and until an infection has cleared up.

A number of RA medications can have an impact on liver or kidney functions. If your laboratory results indicate increased liver enzymes or other abnormal results, your doctor may want you to change therapies.

RA is a disease that attacks primarily during child-bearing years for many patients. If you are pregnant or planning to become pregnant, you need to talk to your doctor about what you should do to protect an unborn fetus against birth defects or miscarriage. If you plan to breastfeed, your doctor may suggest an altered treatment plan to keep your RA under control while you are breastfeeding and until you are able to return to your previous therapy.

Effectively talk to your doctor When you visit your doctor, be sure to describe any symptoms you are experiencing or have experienced since your last visit. Make special note of any new symptoms or difficulties. Be sure to mention how RA is effecting your ability to engage in everyday activities, such as bathing or dressing yourself, turning knobs, holding a cup, getting up out of a chair or the car, or walking for a short distance. If RA is keeping you from doing the things you want to do, don’t be afraid to discuss options with your rheumatologist.


Read this post in its entirety:
Signs You May Need to Change RA Treatments

Carnival of MS Bloggers #161

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Creating a World of My Own

by Melissa L. Cook of MSsymptoms.me

Papers stacked high, email flags a mile long, a budget to reconstruct on my desk, a teacher in for an evaluation, and it was already 2:30 pm - I would be home late again tonight. Double-timing as I navigated the halls of the school touching base with each of the teachers to see if they needed anything - support, supplies, a travel request. On to instruct an after school teacher inservice and then I would hightail it to a conference call on a new state report. I loved my job. My career as a school district administrator was, simply put, awesome. Little did I know my driven world would abruptly skid to a crawl, robbing me of my oomph and leaving me alone with no more tasks to complete than to peel myself out of bed, slip on clothes and cook dinner - tasks proving difficult at best on some days. Multiple sclerosis had taken an ugly turn for me for a period in my life.

Initially I was too ill to be aware of my devastating launch into isolation. Loneliness was a few months off. Fearing the worst was about to befall me, I planned my final arrangements and put my affairs in order. Then I waited. Nothing. Waited some more. The shock of being alone hit me like a ton of bricks. Overload at the office made it difficult to sustain meaningful relationships in the after-hours clearly evident at this point in my life. I was alone now during the day; my life would never be the same.

A few years later, I would write a blog post called, “Disability is Not a Bundle of Sick Days” with the conclusion, “It is as if I have spent the past 31 months out on sick days. Disability isn’t a sick day, it is life. It is about time I realized it and start living again.” I hid in my home for two and a half years. I was sick. I worried the people of my small town would question why I wasn’t working if I could mosey into the post office or store. Then one day I ventured out with a camera in hand to photograph the fall colors and was welcomed with open arms by my neighbors and friends whom had wondered what happened to me.

Johannes Vermeer, A Lady Writing

Creating a world of my own came from the freedom gained in throwing out the “sick day” mentality. Multiple sclerosis is a day-by-day illness meaning there are times I feel normal and can do things I used to. The first order of business was making new friends. Second, purpose was reintroduced into my life when I began blogging about my MS story and the latest research on www.MSsymptoms.me. Third, my desire to help others led me to become a first responder. People with disabilities can be assets to the EMS. Then, I became a board member for the local domestic violence and rape crisis center, putting my administrative training and education to use. Now I am polishing up a children’s story I have had on my mind for years and have a collection of short stories on living in Alaska’s bush country to revise.

Multiple sclerosis still hangs around my doorstep making an appearance periodically. However, I balance my new world in a way I never could with the demands of being employed. Resting as I need and remembering “all things in moderation” allows me to live an awe-inspiring life without the career I once loved.

The old saying, “When one door closes, another one opens” has been so true for me. My career goal of becoming a superintendent of schools with a Ph.D. was not realized. However, my dream of writing is taking shape. In addition, I find time to play with my grandchildren, quilt, bead, take photographs, and I want to learn how to paint with watercolors. Creating my own world becomes more exciting by the month. Yes, I still spend most of my days alone but I am not lonely; I am happy again. And, at the end of the day my best friend comes home to spend the evenings and weekends with me. I love you, Elgin! Thank-you for keeping me going.


This concludes the 161st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 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, December 2, 2014.

Comments for this post.