Is anyone here with SPMS taking a DMD? If so, can you share your story? Advice of your neuro? Do you feel it's helping?
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None of them are 'approved' for it, but Betaseron has been shown to be effective in a study. I think all of them would be somewhat effective, just getting the insurance to pay for it might be very difficult.Bill
Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09 -
I'm getting Tysabri. I don't see any difference in the MS, unfortunately.“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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you got started? how is it going?Originally posted by jazzgirl View Post"Be kinder than necessary because everyone you meet is fighting some kind of battle"Comment
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Anyone go from tysabri to betaseron once SPMS is suspected?Comment
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Originally posted by mibishe View Post
It's okay, M. My blood pressure SKYROCKETS during the infusion, but goes back down to my normal 90-something over 70 once I'm finished. I'm not seeing any difference as far as the MS goes, but my pocketbook is feeling some pain!
“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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Jazzgirl - What made you decide to start tysabri? Did you ever try betaseron?Comment
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It really wasn't my decision, Stacer, it was my neuro's. I've had MS since 1979...long before any drugs existed to treat it. Luckily, I was barely an adult (22 y.o.) and it was merely a nuisance.
Anyway, I was on Avonex, Betaseron, Copaxone, Novantrone, Methotrexate and now Tysabri. Once I started progressing, I progressed right through all of them!
“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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There are 2 parts to SP
There are 2 parts to SP. SP with relapses still present & SP with relapses no longer present.
In the first part of SP when occasional relapses and lesions still occur--it is still inflammatory and should be treated with DMD to fight this inflammation part of the SP.
In SP with relapses still present its still partially inflammatory and partially neurodegenerative. The inflammatory part should be treated with a DMD like betaseron or Tysabri
As wkikta said beta has shown itself to be somewhat effective at this stage and Tysabri too. Both are approved for relapsing forms of MS which SP with relapses still present is.
When relapses are no longer present its fully neurodegenerative. There are no meds for it but symptom relief meds. Ampyra was recently approved to help with walking speed in this stage--increase the speed of nerve transmition by aiding the Sodium-Potassium pump in nerve transmition...so amypra is not a DMD just another symptom med.
Copaxone I hear from some is use off label in 'SP with relapses no longer present', because in theory copaxone should have some neuroprotective properties which might help in the neurodegenerative phase of MS.
The stages of MS:
RRMS-> Worsening RRMS-> SP with relapses still present-> Sp with relapses no longer present.
Its an inflammatory disease up to 'worsening RR'
It part inflammation & part neurodegenerative in'SP with relapses still present'.
Its fully neurodegenerative in 'SP with Relapses no longer present'.
this is a good site that shows these stages. scroll down to see the second chart of Disability versus Time to see these stages.
http://www.mult-sclerosis.org/msprognosis.htmlxxxxxxxxxxxComment
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