Medicine: What everyone taking for there... - My MSAA Community

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Lay24 profile image
18 Replies

What everyone taking for there MS??

Me just started tecfidera 2 days ago after

Using rebif for a while

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Lay24 profile image
Lay24
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18 Replies
Iona60 profile image
Iona60

Gilenya now. Started on Rebif, but it didn't work for me. I was then switched to Copaxone for a number of years.

karenmbloom profile image
karenmbloom

Betaseron since dx in 2008. Does it work...who knows. I lost my legs (paraplegic) a years after dx, altho dr said I had lesions 10+ years old so had it but it was in remission. My legs went FAST but no other symptoms have come and stayed. I have core weakness because of life in wheelchair - but other symtoms come and go. Neuro considers me stable the last five plus years - so I guess that means it's working.

Fancy1959 profile image
Fancy1959

Hello again Lay24, it's Fancy1959 back again. I am currently on the once a month Tysabri given intervenously. I've been on that now for about 9 monthes. Prior to this I was on Tecfidera. After about 20 months on ot, i noticrd a decline in my MS. Upon checking with MRIs of the head, neck, and spine new lesions were found on my spine and I was taken of of Tecfidera. Boy, do I miss it's convenience.

Sulton profile image
Sulton in reply toFancy1959

I was on Tecfidera for about 2 years. I wanted to tear my skin off most of the time and it caused permanent stomach damage. I went off of it and have to take everyday now. Before that, I was on Tysabri once monthly infusions for about 4 years. I lost way too much weight, headaches were worse, and picked up a weird form of Raynaud's syndrome on my feet and hands. My neurologist took me off. I am on no MS meds, but a cocktail of other meds.

erash profile image
erash

Lay24

No dmt's only symptomatic meds.

Copaxone and betaseron early on.

So many choices now...dizzying!

Momjules profile image
Momjules

I was on copaxone for three plus years.

I'm now on tecfidera since oct 2016.

My constipation is 95 percent gone!

ddeadred profile image
ddeadred

On Copaxone for 9 years with no problems... Also take Baclofen (3x), Neurotin (3x), and Ampra (2x), morning-noon-night... was on Betaseron for 8+ years until it ate the tissue under my skin on right thigh leaving a 4" scare after surgery to clean it out... Fighting MonSter since 1986, dx in 1994, but Cleveland Clinic dates to '86with first optic neuritis... Better living through chemistry!!!

Eleyne92 profile image
Eleyne92

I've been on GILENYA for five and a half years. No new lesions, no relapses, just a slow decline. My neurologist reclassified me as SPMS a year ago. I was on copaxone before but switched to polenta because my neuro liked it's overall outcomes. I also take Ampyra and a fistful of supplements.

Sulton profile image
Sulton in reply toEleyne92

Ok, I'm a medical laboratory technologist and when I hear polenta, I think of food. I have not heard of it as a med. is it new and does it go by a different name?

Eleyne92 profile image
Eleyne92 in reply toSulton

Polenta ... nope. Can we say "d**m you, autocorrect"??! It should be GILENYA. 😬😕😎😁

mhepler531 profile image
mhepler531

Tecfidera for about three years since diagnosis. Occasional flushing, but no other side effects. No episodes or new lesions.

alligatormary profile image
alligatormary

As of right now I'm not taking anything. I was on Rebif but it was hurting my liver. Now I'm playing the waiting game with the insurance company for a new one. not sure which one yet.

Mary

Sulton profile image
Sulton in reply toalligatormary

Oh my, I'm sorry. insurance companies can be very difficult in our time of need. Good luck, I hope everything works out for you!!

alligatormary profile image
alligatormary in reply toSulton

Thank you

greaterexp profile image
greaterexp

Dx in Sept of '16, and started Copaxone 40 mg late Jan. It's too early to know how well it's working, but I'm wondering if I'm not going into another relapse already.

4fishylady profile image
4fishylady

I am 73, diagnosed 3 yrs ago. Was put on Tecfidera 1 yr ago. Doing very well so far. Have my days of leg weakness and brain fog, but so far my case is not as bad as some. Don't know of any side effects, except for the initial bit of nausea. It went away after a month or so. One Neuro/MS specialist said I should not take it, as she thought I had PPMS. But the other one said no one knows for sure, and if you have fewer relapses on it, you're that much better off! (BTW, I have had the brain fog and fatigue issues for 20 - 30 yrs! I assume that I have had it all along.)

Jbahnan profile image
Jbahnan

hello lay, I take AMPYRA really works for me. oral pill

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