PatientsLikeMe is proud to announce a pilot program in our multiple sclerosis community which helps patients submit treatment-related adverse events directly to the The U.S. Food and Drug Administration (FDA) through our site.
“Adverse events” are severe side effects or events that occur as a result of using a medication, medical product or device. Understanding when these events occur helps the FDA better regulate the pharmaceutical and medical product industries to protect consumer safety and bring safer, more effective products to market.
We are excited about this pilot as it marks the first time ever that an online patient community has helped its members identify and report adverse events. We recently submitted our first batch of reports to the FDA’s MedWatch system.
Patients like you are becoming more and more influential in their treatment decisions. No longer are you simply consumers of pharmaceuticals and medical products, you are customers. In this emerging world, you have become better educated about your treatment options, the risk and benefits of different treatments, and your overall quality of health. Now you have the opportunity to tell the FDA if you’ve had an adverse event.
Welcome to the new world.
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I can see the potential for this type of sharing to be hugely helpful, but used with medical supervision also. My daughter has Multiple Sclerosis as I do and there are drugs I have had adverse reactions to that she could take and vice versa we are both on different treatments now geared to the age we are and the course our disease is on. I am currently taking Betaseron shots every other day. I have had improvement show on my MRI scan however I am still using a wheelchair. I have noticed some cognitive improvements such as being able to concentrate enough to write this when there have been times I couldn’t. I have on the down side noticed a large amount of hair loss probably due to Betaseron. I just tell myself I had a fairly normal life before being diagnosed at age 32. I was a majorette in high school which required a lot of coordination and practice (not M.S. traits) however I probably had beginnings of it then because when walking through doors I would often hit the door frame, indicating my balance was not perfect then and my friends would tease and say “way to go grace”. I don’t really like the word disabled even though it applies. I prefer enalbed, M.S. has enabled me to be disabled to be productive in the work force, however it has enabled me to spend time at home with my 3 grandchildren. They are eager to help me when I need it and I can find things on the computer to help them, that I couldn’t have done if I still worked. There is a lady I went to church with before I moved to another state that has died and been brought back to life 3 times. I told her God doesn’t put more on you than you can bear so he must think we are strong people (she has severe asthma). It gives us something to chuckle about and to keep going. Things aren’t perfect but no one’s life is. We all have our own cross to bear. I’m just thankful I’m not bedridden, it could always be worse. I new a lady who was bedridden with M.S. who was the most positive person I’d ever seen she was always smiling and never complained. She has past on now which says she had reason to complain & didn’t so she taught me how to cope. It reminds me of a movie I saw once “Galaxy Quest” a line in the movie said “never give up, never surrender” that has to be a great motto for anyone with chronic illness. I am sorry I’m afraid I’ve revealed a problem of being at home I talk to much. I just hope something I have said will help someone.
Thank You for listening,
Clarice Baker
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