Hi everyone, I’ve been on Avonex for 6 months.. that failed - not with a relapse but with bad side effects, they put me on Aubagio 6 months ago and I’ve just shown up with 18 new brain lesions!!
What can I try next? I do not want to be on anything with the risk of PML... now is Rebif ? Does anyone recommend? Or any other treatment that doesn’t involve PML risk ?
Hope everyone else is well!
All I will say is you have to keep trying treatments until one day you find the 1 that works for your MS. I've been on Rebif and there's no PML concern. Rebif was fine except it didn't work for me just like Avonex and Copaxone. I quit all DMTs except diet and exercise which did help me but not enough. That doesn't mean it isn't the best thing for your MS. Try Rebif, try every MS treatment until you find the 1 that is the 1 for you. Unfortunately, we are two things when we get diagnosed with MS. No doctor will ever say this but we become medical mysteries and science experiments and those are good things. You're just in the bad part of MS treatment. You're trying to figure out which is the right DMT for you. I'm on an infusion and think it's working. Try the next treatment for you. It will seem like no one is giving their blessings other than saying it can't hurt. You will keep swapping until 1 day you will find the right 1 for a time. I truly wish I had something better than Rebif isn't a bad drug to try and I hope it's the right answer for you
Sorry I thought I had posted this already. Some information I have posted, but seeing it again doesn’t hurt.
Lots of information, but helps having it in one post versus all over the internet.
Repost - FYI:
Sorry in advance for the long read:
For cognitive and fatigue issues the medication Ampyra might help. It’s worth a try. See video as it mentions that it can help with walking problems or any where there is demyelination. For vision issues steroid infusion has helped others in this forum.
https://m.youtube.com/watch?v=UT8xlpRnsmU
This is a webinar that mentions MS medications and how they compare to each other. This information is scattered all over the internet and great to have it in one webinar. A must see.
“Published on Apr 23, 2018
Join RMMSC Medical Director Dr. Timothy Vollmer for an in-depth look at disease modifying therapies (DMTs) – the front line in our fight against MS. This webinar will give you a better understanding of the treatment options for MS, including insight into how specific DMTs work, their comparative safety, and their comparative effectiveness.”
👇👇👇👇👇👇👇
https://m.youtube.com/watch?v=lDvb6tVCxOI
Some data presented👇:
@ Avonex decreases relapses by 30% and has no effect on brain atrophy.
@ Copaxone
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@ Aubagio Tablet
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@ Gilenya
Decreases relapse rates by 60%
Decreases mri activity by 60 to 70%
Decreases brain atrophy by 34%
Chance to improve symptoms is moderately high.
@ Tysabri:
Decreases relapse rates by 67%
Decreases mri activity by 80%
Decreases brain atrophy by 45%
It’s not recommended to use this medication if you are JCV positive.
@ Tecfidera. Tablets
Decreases relapse rates by 50%
Decreases mri activity by 50%
Decreases brain atrophy by 30%
@ Ocrevus
decreases relapse rates by 80%
decreases mri activity by 95%
decreases brain atrophy by 45%
Chance of improving symptoms is very high in RRMS.
Decreasing relapse rates should be a must when fighting MS because my first relapse was unexpectedly horrific. Wish I had ocrevus and it’s 80% decrease in relapse rate before eventual job loss, but that’s the breaks.
Other MS information 👇
https://m.youtube.com/watch?v=sG1DPWKW99E
https://m.youtube.com/watch?v=0_iPucV2SxM
https://m.youtube.com/watch?v=J4prsO-FDzs
Ocrevous in 5minutes👇👇👇
https://m.youtube.com/watch?v=7ObnkCuU7xo&l...
http://mscured.com/stem-cell-transplant/what-is...
Scroll down then Press home to watch this video.
https://m.youtube.com/watch?v=T1ipXA4I0_M
This video was 2016 and need to follow up to see where this doctor is with his stem cell work and his nerve damage repair progress.
https://m.youtube.com/watch?v=FOriRoKx-34
https://m.youtube.com/watch?v=TvnYmWpD_T8
...
@A MyMSTeam Member thank you 😊 It was definitely a ruff day finding out I had all those new lesions. I really like Aubagio, I had no side effects, maybe that’s why... it wasn’t working! I’m looking into Lemtrada 🤞 I see my specialist next week.
🤗 I hope your doing well now.
I was afraid of PML also but all drugs run some risks. I'm on Tecfidera and doing well with routine blood work (every 6 mo.).If my readings come back where I'm risking PML my neurologist will have to put me on a different therapy. I've tried the natural therapy route with diet and vitamins but ended up not being able to drive or walk very well. Please consider Tecfidera, it's been wonderful not having to do Copaxone injections.
I believe lemtrada or ocrevus are good next medications to get on. What I would ask is;
Do I need an Aubagio wash out?
I’ve read that aubagio can stay in your body 2 years after stopping it.
If current new lesions are active, do I need a round of steroids to halt the inflammation now?
Ask about the maintenance required for each medication.
Too much maintenance and working full time may not not be doable.