It's time for another informal survey. I was interested to run across a forum where people were discussing diarrhea as a side effect of Copaxone.
I have been on Copaxone for over seven years and can say that diarrhea was never one of my side effects. In one report of adverse events from the FDA, in 9,277 patients taking Copaxone, 115 report diarrhea. This equals 1.24%
Because diarrhea can be a symptom of MS, one theory might be that it is just the MS causing the diarrhea. However, in the study mentioned above, all cases of diarrhea resolved when people stopped using Copaxone.
I'd like to hear from you. Does anyone out there notice a correlation with Copaxone and diarrhea? Does the diarrhea come on quickly following the injection? Have you found any way to make this better? Don't be shy - tell us what is happening. You could help someone out there who needs to know they are not alone with this crazy disease.
We already knew this was true. However, a questionnaire-based study among 3,800 people with MS in Denmark, Sweden, Norway, Finland and Iceland has further confirmed these results and given us a little more insight.
In Denmark, one out of four people without MS tried alternative and complementary medicine (CAM) in the past 12 months. However, among people with MS, the number of people using CAM was over 50%.
Other interesting findings included:
- People with MS tended not to use CAM to address symptoms, but as an overall "preventive and strengthening element"
- Contrary to some people's popular beliefs, the people most likely to use CAM were not naive, uneducated people with no resources. Instead, the group most likely to try CAM modalities are young, well-educated women.
The researchers point out that these findings are important for doctors to acknowledge, as many of their patients are surely using CAM. I will add my own plea that neurologists learn how to listen to patients with open minds about the CAM therapies that they might be using or interested in. Otherwise, patients will use them without informing their docs. I know I have in the past.
What about you? Have you tried CAM? What has worked for you? Share your stories in the comments section below.
Read more about complementary and alternative medicine and MS:
Source: University of Copenhagen. (2013, April 23). "Data Gathered Reveals Extent Of Alternative Medicine Use By MS Patients." Medical News Today. Retrieved from http://www.medicalnewstoday.com/releases/259414.php.
Back when there was Copaxone, Rebif, Avonex and Betaseron, things were pretty easy to pronounce (although my nurse kept referring to my "Copazone" injection when she was teaching me how to give myself a shot).
Now there are more therapies, with some names that sound like words from obscure foreign languages or like you are trying to say something in English, but with a really heavy accent.
I've chosen a couple to focus on. I apologize for my non-standard pronunciation annotation in advance:
Tysabri: I think this one is pretty easy, but I have heard it pronounced "TEE-sab-rye." There is also the "tie-SAY-bree" verson, as well as a couple of others. The correct pronunciation is "tie-SAH-bree." I would not ever attempt to call it by its chemical, non-trade name, Natalizumab. Just can't do it.
Aubagio: This one is easy once you know how to say it: "oh-BAZH-io." Pretend that you are French when you say it. You can always resort to the chemical name of teriflunomide, which also takes a little practice.
Gilenya: I almost didn't know what this was the first time that someone pronounced it correctly for me: "JILL-in-ee-ya." I had been pronouncing it with a hard "g" at the beginning and not emphasizing the "y" as a syllable, so it came out "gil-EN-ya." When I said it like this, it had kind of a deep South twang to it. I think I'll continue to refer to it by it's quirky chemical name of fingolimod.
Tecfidera: Otherwise known as the much more straightforward BG-12. I'll admit that I don't know how to say this correctly. Anyone who has a clue on how to pronounce this one, please chime in.
Hope this helps. If you are still nervous about these pronunciations, do what I do - let your neurologist mention it first, then copy his or her pronunciation, even if it is wrong.
With a title like that, I am pretty sure that most of you are expecting some bad news about somebody opposing the use of stem cells to treat MS. However, I bring you information that is quite the opposite.
I was so lucky to be able to attend The Second International Vatican Adult Stem Cell Conference, entitled "Regenerative Medicine: A Fundamental Shift in Science and Culture." Presented by Stem for Life Foundation and NeoStem, this amazing 3-day conference brought together scientists, clinicians, patients, politicians and ethicists to discuss the latest advances in the science and application of adult stem cells.
For absolute clarity, I need to clarify that this work is on adult stem cells, rather than embryonic stem cells. Adult stem cells are defined as "any pluripotent cells that are not embryonic." This includes cells from cord blood (obtained from umbilical cords at birth) and placentas.
When I mentioned to people that I was attending such a conference, I received some unexpected responses from some of them: "How do you know it's a legitimate conference?" "What would the Catholic Church know about science? Why would they care, unless it's to oppose something?"
Let me assure you, as a skeptical epidemiologist, the conference was of the highest integrity. There were presentations from Dr. Saud Sadiq, Director of the Tisch MS Research Center of New York; Dr. Richard Burt, Chief of Division of Immunotherapy of the Feinberg School of Medicine of Northwestern University; and Neil Warma, President and CEO of Opexa Therapeutics. They each spoke of trials that they are conducting on cell-based MS treatments and I will bring you updates on those in the upcoming weeks.
As a person living with MS, I felt empathy coming from all presenters and the organizers, as well as an urgency to bring some of these therapies to those of us who could benefit. People with MS were given time to speak, including Richard Cohen, journalist and the author of the book, Blindsided. A young girl also presented her story of diagnosis with MS at age 14, as well as her amazing recovery following an infusion of stem cells.
Lastly, as a practicing Catholic, I was proud. I realize that some people find it difficult to reconcile the ideals of science and faith. However, a key message here was that science reaffirms faith. As one participant said, "These amazing results serve to point to the fact that God is present in life. After all, is it possible that humans can be the result of 10 billion biological "accidents" over the ages? And using stem cells to rebuild organs and repair damage...God can only be thrilled with this progress."
Again, I look forward to bringing you some articles covering the various presentations that I heard about stem cell and other cellular therapies being applied to multiple sclerosis in the coming months.
Airline travel is not the most fun thing about a trip, especially when you are on the plane for many hours. I have been traveling internationally quite a bit recently and have figured out a couple of ways to make the situation not only bearable, but even relaxing and pleasant at times.
Take a look at the full article (which I wrote while on an overseas flight): Air Travel with Multiple Sclerosis
What about you? Do you have any tips that could help the rest of us travel with minimal stress and symptoms? Leave your advice in the comment section below.
Allergies are strange things. When I was much younger, I was allergic to seemingly everything: cigarette smoke, pollen, dust. Then I went through two series of "allergy shots," injections to desensitize me to my main allergies, and things calmed down for the most part.
Now, it seems to vary. Some years I breeze through Spring without noticing anything in the way of allergy symptoms. Other years, like this one, my eyes itch so badly that I look as if I have been weeping (and often feel like weeping due to the discomfort) for weeks on end. Still other years, my eyes are fine, but I have a dry, hacking cough that isn't relieved by cough suppressants.
I have noticed that when my allergies are acting up, I tend to feel more MS-y, as well. With itchy eyes comes the MS hug, so I am enduring that at the moment.
I wonder if it is the circulating cortisol that is making me feel my MS more acutely, or just the general feeling of misery and malaise that comes with allergy season. I imagine it is a combination of both. All I know is that I am looking forward to a little relief, even if it means moving into hotter weather.
What about you? Do your allergies bother you? Do you notice more MS symptoms during allergy season? Leave your story in the comments section below.
Many of us know Michael Graves' name as an architect. Perhaps even more know him as the one that gives the lovely and whimsical look to many of the products in Target.
I recently had the opportunity to hear him speak about his work creating housing and products for people with disabilities, as well as to make hospital rooms more functional.
I was astounded at the simple loveliness of his designs. His creations not only made life easier for someone with physical challenges, they made life prettier. Everything he had created was functional, but without compromising design esthetics.
Although looking at Michael's designs made me happy, I also felt a little upset at how ugly most of the products for disabled people really are. Perhaps, inspired by an aging population (and their resources), designers will begin to look at this market more seriously and start to create things that would look nice in any home, yet still be functional for people with physical challenges. I urge designers and architects to follow the example of Michael Graves and make things that enhance the lives of people with disabilities, by bringing them into the conversation.
What about you? What would you like to see redesigned? Leave your comments in the comments section below.
Read the full article: Michael Graves: A Hero and Role Model for Disabled People
Studies published in Nature describe data that seem to point to a link between sodium and the risk for developing autoimmune diseases, such as multiple sclerosis.
The researchers found that people who ate fast food more than once a week had a higher number of TH17 cells than people who did not eat fast food. These TH17 cells usually help the body repair itself or fight disease, but it seems like salt may cause them to multiply too fast, at which point they attack the body's own tissues and cause autoimmune disease.
Exposing the immune cells of mice to sodium caused the cells to produce more TH17. When mice that were genetically engineered to develop MS were fed a high-salt diet, their disease progressed rapidly.
While it is too early to make definitive recommendations about people with MS cutting back on sodium, I would think that this information would motivate people with MS to reduce salt in their diet.
Tecfidera joins Aubagio (teriflunomide) and Gilenya (fingolimod) to become the third oral disease-modifying therapy for MS available in the US.
Most common side effects from Tecfidera are flushing and gastrointestinal events, such as diarrhea, nausea and abdominal pain. These occurred in up to 60% of patients, however were usually pretty mild and only lasted a couple of weeks. Tecfidera has already been used for several years in Europe and other places to treat psoriasis.
The main trials of Tecfidera are the DEFINE and CONFIRM studies. Here are what they found:
- Compared to placebo, Tecfidera reduced the risk of relapsing (over 2 years) by about 50%, whereas Copaxone only reduced the risk by 29%.
- There was a 21-38% reduction in risk of disability progression over two years (as measured by the EDSS) in people on Tecfidera, whereas Copaxone users only had a 7% reduction in risk of disability progression.
More to come on this medication in future articles...
Please feel free to contribute your thoughts in the comments section below.
I think our stress around MS changes as time goes by. When I was first diagnosed, like many people, my first thoughts were about how bad this was going to get and how soon it was going to get bad. My main stress was about the impact that this would have on my future and how it would impact my dreams for myself.
After living with this disease for awhile, it became clear that I wasn't going to lose all my abilities quickly. I got into the mode of being stressed about how MS was affecting individual days, both in the present and in the future. I would worry that I wouldn't be able to attend a certain event, that I would be too tired to play with my girls or that someone would be offended if I backed out of a lunch date.
Now, I think I feel much less stress over the whole thing. I have found that most people are pretty understanding if you have to cancel plans, as long as you give an explanation. I have also learned that most things can be pushed back and schedules rearranged without too much damage - most urgency was simply created in my head.
I won't say I am completely free of negative feelings about my MS, but I think I have moved from stress to frustration. The difference for me is subtle, but I feel like stress carries with it the implication that I need to do something differently than I am doing in order to fix the situation, whereas frustration is more like "localized anger" at a symptom or other part of the disease, without implying that I can do anything about it.
What about you? What part of MS causes you the most stress? Leave your stories in the comments section below.