MS Meds
This Feature Story is from our friend, Margaret. She was gracious enough to share her experience with us. I'm sure we can learn from her and understand that we are not alone in the experiences we have had to deal with in our own individual circumstances. Your stories can be easily submitted either in writing as a comment or even as a video.
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My name is Margaret and I was diagnosed with relapsing MS 3 years ago; I am 33 now.
The left side of my body had been slowly detracting, making me unable to work in the medical career that I had. I had been diagnosed with serious depression over 15 years before, not knowing I had MS. I have been on Prozac, Xanax, Zoloft, Seroquel, Effexor, and Buspar. I had terrible fatigue and needed assistance with simple everyday activities.
I tried all the typical treatment forms, shots, shots and more shots. I am only 5'3" and weigh 100 lbs, so I had serious side affects. I stopped each treatment after only one week.
The latest treatment I had was Tysabri*. I have now been on it for 16 months and after my own rigorous physical therapy, I am now almost completely mobile on my left side and take NO ANTIDEPRESSANTS anymore.
My energy levels have returned and I can honestly and happily say I have almost restored the person I was before. I have been awarded disability and now, I enjoy my life with every moment!
Here is a list of the more common medication treatments used to treat MS*
- Avonex (interferon beta-1a)
- Betaseron (interferon beta-1b)
- Copaxone (glatiramer acetate)
- Extavia (interferon beta-1b)
- Novantrone (mitoxantrone)
- Rebif (interferon beta-1a)
- Tysabri (natalizumab)
- Corticosteroids
Another note about Tysabri or natalizumab
Patients have to 'qualify' for treatment with this medication. There is a "black box warning" on this drug, in that it does have a potential for a deadly brain disease called Progressive Multifocal LEUKOENCEPHALOPATHY.
TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.
Cases of PML have been linked to patients taking TYSABRI who were recently or concomitantly treated with immunosuppressants (ie, interferon, glatiramer acetate and steroids , as well as receiving Tysabri.
Part of the 'qualification' process includes the amount of steroid medication treatment. Tysabri is not recommended for people who have been on some form of steroid for long amounts of time, this inludes Solu-Medrol or methylprednisolone as well.
Methylprednisolone prevents the release of substances in the body that cause inflammation and can give relief to many MS symptoms.
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I too was on Tysabri and loved it, but I needed to have a surgery and they told me I had to stop taking it until after the surgery. Then when I tried to go back on it, my body rejected it. Good luck with it. It too turned my life around and I was normal again.
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That's great that you had such good results from Tysabri. I started off with Betaseron but stopped because I was having trouble dealing with the flu-like symptoms.I took Tylenol to help relieve the symptoms, and didn't feel any relief.The Beta Foundation support line was extremely helpful in providing support and answering questions. It was very comforting to be able to contact a nurse anytime. Aside from the support line another great aspect about the Beta Foundation was that they offered financial assistance to help cover the cost of the medication, which we all know can be expensive.I would have stayed on Betaseron if it weren't for the side effects.
I am now participating in a study for a daily oral medication called Fingolimod. I don't feel any side effects and its great not having to do the injections. I hope it will get approved by the FDA and will be covered by my insurance. I wish everybody well with what ever treatment they are using and hope one day soon there will be a cure.
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DX May 2000
LDN 2001
I have never taken anything but LDN
No progression
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I was diagnosed with relapsing remitting MS in 2006. From then til now, my life has changed even more than I'd ever thought. Not only do I have MS, but also Type II Diabetes and I'm a recovering alcoholic/drug addict. I have 15 years of sobriety, I'm doing the best I can to keep my glucose level below 7.0. Yes, I have a lot on my plate these days, but I also have many great things in my, too! I just started an e-commerce business so I can work from home. I have a wonderful husband, Paul, who is very supportive. Our dog Tippy, who we got at the humane society, is our child and so cute and loving! My life is pretty simple and I like that. So all in all, I'm ok.
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I tried all the typical treatment forms, shots, shots and more shots. I am only 5'3" and weigh 100 lbs, so I had serious side affects. I stopped each treatment after only one week.
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I was on Tysabri for 30 months until November of 2009 when I was diagnosed with breast cancer. I had an encapsulated tumor 4 1/2 cent. They feel that it had been there for several years and that it is possible that Tysabri ramped up its growth. Since the time that I have quit taking Tysabri,2 more women from the group I was in have been diagnosed with breast cancer. There is no proof that Tysabri caused this but I wish I would have never ever been on it.
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