Hi. This is my first post so hope I’m doing it correctly. I need some advise, as I have to make a decision which DMD to go on. Have had MS for years but only got diagnosed 10 years ago, told to basically go away and come back if anything happens!! So just got on with it until last year when I was beside myself with weird sensations and terrible fatigue. Anyway got to see a Neurologist and he prescribed Tecfidera which I started last weekend, but first tablet made my face feel like it was on fire and swell up, and because my tongue swelled up too I can’t take it. So options now are Caproxone, Extravia or Aubagio. I don’t like the sound of any of them to be honest and was wondering if anyone can share their experiences good or bad to hopefully help aid my decision. I’m very well apart from the flu like symptoms, stiff muscles and fatigue, so don’t really want to take something that has those side effects. Also has anyone taken anything that has given them more energy? Many thanks.
I am new to this group too and this is my first response to anyone, I was diagnosed with RRMS 18 months ago and was put on Tecfidera. I responded really badly to this DMD, flushing, swelling and violent vomiting when you go from the 120mg to 240mg. It got to the point where I had lost a lot of weight and felt completely shattered all of the time. I raised this with both my consultant and my MS nurse and they called me in to look at other possible options.
I have a massive needle phobia, so daily injections and infusions were an absolutely terrifying option to me, I asked what other tablet form DMD’s there were available, I am now on Gilenya (Fingolimod), I have not suffered any side effects, possibly a little low in energy when I started taking it but other than that nothing.
You do have to go in to hospital for the first dose and be monitored for 6-8 hrs as the drug can lower your heart rate.
I would highly recommend this DMD option, it has worked for me.
I hope the above helps
Alex F thank you so much for your reply
id like to go on fingolimod but I haven’t been offered it. Think I have to try another one of the 3 I mentioned first. I’m not good with needles either!
Glad it’s working for you. I need to just get on and make a decision!!
I’m sorry you’ve had such a bad reaction to Tecfidera. It’s a shame because when it works, it does a good job. (I had to stop taking it because of low lymphocytes.)
Out of the drugs you’ve been offered in its place, they all have a relapse reduction rate of about 30%. The problem for you is that two of the three drugs are injectables. But the injections are titchy little needles, they’re subcutaneous (just under the skin) and don’t generally hurt; especially if you do the injections by hand rather than using an autoject device (slightly more violent piercing of the skin, although because you can’t see the needle it’s easier to make your brain ‘do’ the injection!)
The only one that’s a tablet: Aubagio, to me looks like it has too many potential side effects for the benefits. Plus the drug stays in the body for too long after you stop taking it (two years). So if you have a bad side effect, it’s going to take a long time to clear your body.
If you look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid you can compare the three drugs and that might help you to make your mind up.
For me, the choice between these three drugs is easy. Because I have taken it before, and suffered no side effects at all, I’d take Copaxone.
But you need to choose the drug that best suits you. Have you talked to your MS nurse about the options? That might help.
Good luck with the decision.
Thanks Sue that’s really helpful. I was thinking of asking if I can try Tecfidera again to see if got any better over time - I only took 1 tablet after all and it does sound like the best drug. If that doesn’t go well then I think i’ll try Copoxone. It’s good to get someone else’s opinion- thanks again
Why not see if your neurologist could arrange for you to take a super low dose of the Tecfidera for the first week and increase it super slowly over a couple of months? It was recently considered by my new neurologist to do that for me, a sub clinical dose in an ‘off label’ arrangement (in my case it’s a bit too risky but there must be people for whom similar arrangements have been made). You could try asking anyway. It’s definitely a better drug, if you can make it work for you.