I used to be on here all the time but when the boards migrated I lost access… Now I have started a new account. I have RRMS. I also have Grave’s Disease thanks to beta interferon treatment (Avonex), which is known to cause thyroid dysfunction. The hypothyroidism (thyrotoxicosis) has been treated for 2 years with carbimazole but it is not under control, probably not helped by injecting a fresh dose of Avonex every week. So, does anyone know if there are other DMDs in the pipeline that do not have a thyroid dysfunction risk? Or current, since I only know of glatiramer acetate ( to which I was allergic) and the beta interferons. Oh and alemtuzumab, another risk to thyroid function. If I swapped DMD could the thyroid sort itself out? Anyone have any experience please? Or research knowledge?
I’m sorry i dont know the answer to your question but why are you still on avonex if it is causing the thyroid problem?
Surely by injecting more avonex this will just make it worse?
sorry if i am missing the point here!!
I have no experience or knowledge of thyroid problems but surely the neuro should be looking into alternatives for you?
You need to update yourself regarding drug choice as things have moved on. I am learning about the new ones myself at the moment. I have been on rebif for 9 years.
The new oral drug just licenced is Aubagio. (first line same as avonex)
Gilenya (second line treatment)
Lemtrada just licenced but for highly active ms.
Tecfedera is also a new oral drug that should also be available in a few months (already available in Scotland) also known as BG12. (also first line same as avonex)
I am sorry i am not much help but i would personally be questioning being left on avonex when it has caused these problems. I hope your problems can be reversed.
I don’t know the thyroid risk with these new drugs myself yet. Your neuro should know though???
I am looking at Tecfedera and i cant see any thyroid risk in the information ive read so far.
I had an overactive thyroid long before MS diagnosis which was successfully kept under control with Carbimozole although it took several attempts to find the right level.
It is usually stable but goes up again sometimes and I take the Carb again for a while to sort it out.
I have also been on Betaferon for 10 years and I have no idea if that affects my thyroid but I don’t care because it works and that is far more important than the thyroid issue so I wouldn’t come off it anyway. The thyroid thing is just an inconvenience whereas MS relapses …well, you know!
I’m the other way. When the thyroid overproduces, I get palpitations (GP said I was a week away from heart failure), hot and sweaty, out of breath at the slightest, I had so much muscle wasting I couldn’t stand up from sitting (eg from the toilet). When it goes low I get panic attacks that last for days at a time and lose my appetite, eating practically nothing, getting daily migraines and dropping dead asleep all the time. I can’t live like this.
Thanks Treek. I am still on Avonex because at my last annual appointment (last October) there was no other option for which I’d be eligible. Plus you give 2 years for the anti-thyroid treatment time to work. But it hasn’t, unfortunately. I know the MS drug field has suddenly changed this year but I am certainly not aware of every advance. And hence my questions. I’m going to check out all the drugs you’ve mentioned. Thanks.
Lemtrada (formerly Campath) is reported as causing thyroid problems in one in five people who did the trial IIRC so maybe that’s one to avoid…?
Sorry, just re-read your opening post and see you already know this!
Raspberry, no worries, thanks for any info. I knew it as Campath and have been following its progress for years - I have a friend who was involved in the research. Couldn’t think of its new brand-name, Lemtrada, though.
Im not sure but would copaxone be a better option? X
Lisalou, Copaxone is the glatiramer acetate I mentioned. I was badly allergic to it - I had a hot, itchy lump bigger than an egg on my leg and it took weeks to go down. The medics were all blase about it when I told them. And then they saw it, brought everyone else in to see it and pulled me off the drug immediately!
It looks like my only option at the moment is Aubagio. Tecfidera fits the profile, too, if it made available in England, but I won’t be able to take it because it is in capsule form. Aubagio, then. Thanks guys.
I had Graves disease many years ago and the carbimazole didn’t work for me and I hated being on it so I opted for radioactive iodine treatment which was a doddle except for the steroids I had to take for 2 weeks afterwards. This got my thyroid back to normal for some years until, eventually it started to fail and I am now on daily thyroxine to get the levels up to normal. I will have to read up on some of theses drugs and their effect on the thyroid if I am ever offered them.