Hello
Take the Tecfidera. That’s my short answer. This is why (long answer):
I’ve had MS for 22 years and only been on a DMD successfully for about 5 years (Copaxone). My history with DMDs is bloody awful. I’ve taken 4 different drugs and had side effects from 3 of them that caused me to stop taking them.
Avonex - cognitive problems
Tysabri - elevated liver enzymes aka hepatitis (but it’s very likely that I have autoimmune hepatitis)
Tecfidera - depleted leukocytes
I stopped taking Copaxone after 5 years because it seemed to stop working.
But, my drug history is unusual. In particular hepatitis (which I’ve had 3 times, which is why the Drs think it’s an autoimmune problem - I already have 3 other AI diseases, so it’s rather likely).
So I’ve had lots of relapses after a fairly uneventful first 9-10ish years, the worst one was 7 years ago, since when I’ve not been able to walk. About 2 or 3 years ago, once I’d exhausted the potential DMDs, my neurologist finally decided I was SP. Then this year I’ve had 2 relapses, so officially now I’m Progressive Relapsing.
And, I am seriously disabled. I can’t walk more than a few steps with a walker so am at least 95% wheelchair bound. I have mild cognitive problems, my hands don’t work very well (eg I can’t handwrite any more), I use ISC to empty my bladder (unless I have a UTI when I am easily incontinent), I had a colostomy 18 months ago, I have quite severe spasms and I take a lot of drugs to counteract various symptoms.
I haven’t worked since 2006, at which point I was aged 39. Previously I had a good job, a decent salary and a very nice company Mercedes. I’m now almost 52 and will not work again.
My side effect history is pretty unusual. I have a rubbish body that really doesn’t like many drugs. I didn’t have stomach issues with Tecfidera, nor flushing, and I wished I would get hair thinning as I have too much hair as it is.
There was some research (for some reason the link to the evidence for this doesn’t work anymore) that suggests Tecfidera works best of all when it’s the first DMD a person has tried.
I really do advise anyone with RRMS to take DMDs. Relapses can cause serious damage. Having spent 17 out of 22 years not on one (to be fair, they weren’t available for the first few years), I am a case study in what can happen if you don’t / can’t take the buggers. Right now my neurologist is trying to get me back on Copaxone as taking a different drug is a bad idea. And that might not be possible as I don’t actually fit the criteria (too disabled plus having the ‘progressive’ label). I’m not even too bothered if I don’t get the drug as I doubt that it would help much at this point. But I will still take it if offered. It’s honestly too much of a risk to not take it.
Best of luck with your decision. If you have all the available facts and decide against the DMDs, then it’s not inevitable that you’ll have serious relapses and serious disability. But make sure you know the risks of taking the drugs and the risks of not doing. All of the above is my experience and my opinion. Make sure you take the decision yourself and don’t feel pressured to do anything either way regarding drugs.
Sue