Tuesday April 30, 2013
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.
Tuesday April 30, 2013
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:
Use of Complementary and Alternative Medicine by People with Multiple Sclerosis
Selected Complementary and Alternative Medicine Approaches for 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.
Tuesday April 30, 2013
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.
Tuesday April 30, 2013
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.