Forum

tecfridra vs gilenyia

anyone been taking tecfridra and feel like it doesnt have any effect ,and changed for gilenyia … i hear that works for RRMS ?

VIEWS PLEASE or pm me

thanks

I used to take Tech before it became obvious my diagnosis was ppms and not rrms. I don’t know what you mean by "doesn’t have any effect ". As a disease modifying drug, DMD,that’s all it’s going to do. Modify it. Not cure it. The best it is going to do is slow progression, and reduce relapses and shorten the length should one occur. If you’ve not been having relapses then Tech is working.

I completely agree with Poppy, if you are expecting your disease modifying drug to change your day to day symptoms, it won’t.

A DMD’s purpose is to reduce the number and severity of relapses. If you take Tecfidera and still have relapses, then it’s not working. But rather than swap to Gilenya, you’d probably qualify for Tysabri. Which is a better drug, with fewer side effects and a better average relapse reduction rate. (The qualification for Tysabri is that you have active MS - ie are still having frequent relapses - and have tried and ‘failed’ on another DMD.)

If you’re not having relapses, then the DMD is doing what it’s supposed to, and you are managing any side effects, you would probably be better off sticking with the one you have rather than switching to a different drug.

However, if what you are saying is that you have damage caused by previous relapses that is giving you ongoing symptoms, then you should probably talk to your MS nurse about dealing with ongoing symptoms. There could be drugs, therapies, treatments or aids, that can help.

Sue

1 Like

I’m having a lot of relapses prob more than before with Tec not that it will cure/stop the relapses but maybe not the one for me ??

I know I will never be the same as before esp after the last relapses it’s just chiseling parts of me away but I will speak to my neuro today and see what he says

Hi

Hopefully now you’ve seen your neurologist (or are soon to) and have discussed a change of DMD. It does sound like a change is sensible. If you consider that Tecfidera has an average relapse reduction rate of about 50%, this would mean that some people have a much higher relapse reduction rate and others, much lower. So it definitely sounds like it’s not the right drug for you.

I expect your neurologist has recommended a good replacement.

Let us know.

Su

hi sue saw the neurologist and he agreed that more lessions had popped up and was put on steroids straight away , this seemed to help but are waiting to be put on ocrelizumab in feb , so we will see if thats the right one for me …

(That took some time, didn’t it? Why do MS treatment decisions always take so flipping long?)

I’m glad the steroids have helped. Ocrelizumab (aka Ocrevus) looks like an excellent drug, probably miles better than Gilenya. Hopefully it will keep you relapse free for a long time to come.

Sue