Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Saw the neurologist today. He says Gilenya or Tysabri next for me- already did Copaxone and Rebif before. I don't really want to try it. I"m only 33 and not sure how long I could stay on it. I"m in pretty good shape for having MS for 20 yrs. Dr says so far its has been fairly benign, mostly just sensory issues. But he's afraid the turning point could come any minute and recommends I go for the big stuff. I don't want to try Gilenya. It seems too new and the side effects are so many. I had the blood work done for JCV today and will get that back in a couple weeks. But as the doctor says, they don't really know what the information will mean to an individual. I was thinking maybe of trying it for 1 year- he said there actually has been a case of PML with less than 1 year of treatment. I forgot to ask if it was fatal or not. But he said people generally have issues when they stop it so he does not recommend the 'holidays' some people take. If I knew my disease would remain at the same level it has I'd be fine living with some numbness and weakness and such and staying off the meds, as I have for past 8 months. Anyone?
Why did you stop taking Copax and Rebif? LDN or Betaseron might be worth a try. If you notice a change for the worse you can always switch to Tysabri.
I'm a big supporter of Tysabri and I think it's a miracle drug, literally, but my MS was very active before starting. I will say Tysabri is easier to handle than the shots, less side effects and the stats on it basically say it's almost "guaranteed" to work.
I stopped the Copaxone after 6 yrs due to MRI activity. Im not really sure it was all that helpful as I started it right after #3 was born and took a break for 10 months with #4. So the lack of activity might have all been due pregnancy and nursing hormones. The 8 months of Rebif did not totally quiet everything down so Dr said I could probably expect no better from the other interferons.
I've recently been having leg spasms at night and my right leg went numb to my hip. I've had those early on so they were not new symptoms. Although I did get a new one last December when my throat muscles got lazy on one side. Still are. I still aced the little walking test, but then at home my leg started feeling weaker and like it might give out on me. So I sat and watched a movie.
I started taking magnesium and calcium and the spasms seem to be stopped. The leg is getting a little less numb. I'm torn between 'see its not that bad you can handle this, you don't need the big drugs' and 'this is a little wake up call-do what you can now to preserve what you've got'.
My aunt had MS and died when she was 27. It was actually from a morphine over dose, but she was bed ridden and it was affecting her lungs and they were sure it would have eventually gotten her. My uncle, her brother, also has MS and walks with a cane.
I definitley see where it can go, I"m just really torn about how not to go there quickly.
Even though people here care and its good to get some background.... It is your body ultimately and your choice.... What may be a miracle drug for one may be horrible for another.
For the record... I don't have PML and there are many patients out there who have been on the drug for 2 or 3 years who do not have PML. There are statistics and isolated cases. If you want information about that, I am sure that if you called Biogen they would be happy to release ALL of their FDA required statistics and all of the TOUCH program info that they release to their patients.
I am a Ty user myself. I tried Copaxone (allergic) and Avonex (couldn't stand the side affects). I just had my 6th infusion. I also just had blood taken for JV virus antibody test. I don't know the results yet. I worry so about PML, and the dangers of Ty. I also know that I want a good quality of life while I am here on earth. It's a tough decision whether to go on Ty or not, and a very personal one. So far, my MS has not improved by going on Ty. For the first time since I've started it, I feel pretty good. Usually, I'm tired the entire month, extremely fatigued. I haven't noticed it being a "miracle" drug. Everyone's different.
I just wouldn't fix what is working. Why?