One of the constant questions we hear in this chat room is about Therapies, what effect this therapy has or what effects that there has and the Pros vs the cons of each therapy.
Now to keep this free coming at 12 page post I would hope that everyone could try to keep their answers direct and to the point. I know you can say look who's talking because I'm the world's worst at being wordy but let's give it a shot.
If we can all follow a similar blueprint it should go pretty quick.
1. Put the very first therapy you were on, how long you stayed on it approximately and if it worked for you or if you were gotten off of it because it did not help with your disease progression. Then we do that with each Progressive Therapy we have tried until our current one. I hope this helps fellow chat room members, especially the newbies who are just now getting on there first DMT or it's official name is disease-modifying therapy.
I'm hoping it will help them tremendously. There are just so many therapies out there today that a newcomer can get totally lost in the numbers without realizing there were other options. V
Mine would read as follows:
1. Rebuff was my first therapy. I was only on it about 5 to 6 months and my disease progressed so I was taken off. I also had trouble with injecting myself 3X week. Injection sites grew hard and had raised red welts under them.
2. Tysabri was my second DMT. Improved the dramatically about seven months in. But was JC virus positive. Count started to rise and I got off of it at about 16 to 18 months. Had no other adverse side effects whatsoever.
3. Tecfidera was my third DMT and I was on it for almost 2 years. At about a year-and-a-half I started to notice disease was progressing. While I was on it had only minor occasional flushing but no other side effects.
4. Was put back on Tysabri but JC virus count continue to escalate. Within about 8 to 10 months I took myself off due to increasing side effects day of and day after infusions. Side effects included confusion, lack of ability to concentrate, and fainting. Ended Tysabri approximately May 2017.
Was put on IV steroid injections in between therapies to keep disease from progressing. No side effects from the IV steroids.
5. Begin ocrevus in September of 2017. Am getting ready for my First full treatment or my third treatment overall. No noticeable side effects on ocrevus.
Good luck with the post and I seriously hope it answers a lot of questions for new family members in the chat room. In addition to the post you can always go to the MSAA site called Long -Term Treatments for Multiple Sclerosis.
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Fancy1959
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1. First DMT was Copaxone. It kept me stable for 14 years except for when I took a 'vacation' from it. I had big red welts and itching at the injection sites for the first 6 months and also lipoatrophy at all the injection sites. I also experienced 3 scary post injection reactions that made me think I was having a heart attack.
2. When an MRI showed Copaxone had stopped working, I was switched to Tysabri. Tysabri kept me stable for 5 years with no side affects except excess fatigue right before each infusion. I was JVC+ the whole time and was recently switched off because my index kept climbing.
3. Started Ocrevus in Dec, 2017. Next infusion will be June. No infusion side effects. I do think my overall fatigue is worse but its hard to pinpoint if its Ocrevus or something else.
1) Was put on Copaxone 40ml (3x/week) in 2014. Had severe GI reaction listed in the 20ml label but not (yet) listed in to 40ml label. Showed both labels to my MS center neuro - he never saw me again. 1 1/2 years later switched back to my original neuro.
2). Decided against Ocervus (with my neuro) for several personal reasons.
Have started on Tysabri I'm also JCV positive but on a very low side apparently....... I've still got fatigue on + off and legs still feel like lead at times so will see how I go on xxx I have RRMS.
Started on Avonex. Did great, almost zero side effects. Got off about a year later so I could get pregnant.
When I was ready to get back on meds Rebif was now available do my neuro recommended switching. I’ve been on it since, about 13 years, without problems.
Diagnosed with RRMS 9/17. Started Copaxone 1/18. No big problems with injections, but now wonder if I haven't had a relapse during that past few days. My neurologist discussed Ocrevus when it came out, but we both agreed that if the Copaxone held the MS at a steady course, I wouldn't switch.
Diagnosed with RRMS 2006. Started with Copaxone 20ml daily had a few relapses while on it. Was on it until about early 2016 and then switched to 3 times a week Copaxone 40ml injections came out. Finally had enough of injections in April of 2017 because of welts and swelling and wanted to go on a pill form. Started Tecfidera and have been on it for almost a year now. Some flushing in the beginning but no other problem since. Will see new Neuro in July with most likely a one year MRI follow up to see how Tecfidera is working for me.
Had this beast for 3yrs now. Only DMT I have been on is copaxone 3xs a wk. I use the auto inject and I don't have a problem with it, besides some itching. Then some antibiotic cream takes care of that.
My Neuro is still reluctant to give me 1yr appts. So it's still every 6 mos.
1-When dx with MS my neuro put me on Rebif. After 10 wks. my primary care happened to do her standard blood work and my numbers were off in many tests. (I also had lost 10 lbs. in 10 weeks. Not a bad thing for me except I wouldn't want it to continue.) Anyways my neuro. took me off the Rebif and because he had decided I had PPMS he did not put me on anything else.
2- About 2 1/2 years later I started Ocrevus. I have had the 2 half doses and a full dose.
3-The MS center I go to has changed neuros. and he is talking about my stopping the Ocrevus due in part to my age (68) and the fact that there are questions about if DMTs are effective in older people. We are waiting for some test results. Right now I am up-in-the-air!
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