Hi everyone, my first time on here. I have been diagnosed with RRMS for 20 years now and have been lucky enough to have not been affected very much, allowing me to treat myself with alternative therapies. I recently got sent for an MRI as I have had 3 relapses in the last year. They are offering me DMD, the neurologist said I can pick which one I want. I would appreciate some feedback from others that have been without treatment and then started on dmd’s. Thanks in advance
Hi Isis I have almost an identical situation to you and yesterday was offered a choice of DMDs. have you made a decision? I was looking at aubagio from the brief overview the spec gave me (fewer tests and no injections etc) but looking at the fact sheets on the website im now leaning towards Tecfidera as it has a better success rating than aubagio…
Hello Have you (both) seen the MS Decisions aid | MS Trust ? It lists all the DMDs currently available. Your neurologist may have said ‘pick one’, but the chances are that you’ll be offered one of a selection. Some of the drugs are for ‘highly active’ MS and some only as a category two drug - such as Tysabri - generally available to someone who has been on a different DMD and ‘failed’ on it (ie, continued to relapse). I’d expect that you are offered all the old style injectables (beta interferons and Copaxone), plus Aubagio and Tecfidera (the two most common oral drugs). You may also be offered Gilenya and/or Ocrevus. I definitely think Tecfidera is a superior drug to Aubagio. As you’ve said Octopus, it has a better relapse reduction rate to Aubagio. Aubagio also has a long list of potential side effects, so to get a 30% relapse reduction rate but chance all the side effects, you’d be better off with a beta interferon (imo). A beta interferon such as Plegridy is worth considering, it’s injected only once a fortnight and has few side effects which many people manage quite well. So if you do what research you can, balance out the method of taking the drug, the potential side effect profile and the relapse reduction rate. If you opt for one drug and find it doesn’t suit you, it should be relatively easy to switch to another. Best of luck. Sue
Thanks Sue for your advice, I’ve been looking a lot at the ms trust. They did offer me a choice of dmd, they are all on the table was the quote from the neurologist! I’ve recently made a choice Octopus, gone for a avonex. I haven’t had any treatment so far, diagnosed 20 years ago, I like to do alternative treatments & have struggled to make a choice & accept that my ms wasn’t benign after all. I looked at the action of the drug 1st. I would of gone for tysabri but I was positive for the JC virus & didn’t want to take the risk. So we’ll see. Thanks again
Hello everyone. Read all the comments and you need to make the correct decision now as once you chose it is difficult to swap to something else for no real reason. I was offered a choice but my neurologist directed me to Tecfidera which I have been on for 4 years without a relapse and no problems it is like taking a smarty twice a day. I and my neurologist recently wanted me to change to Ocrevus but since I have had no relapses it was knocked back by a hospital committee. Ocrevus is ok for secondary progression which I now have. I also think it is the best option for me. Choose well and good luck, it is like tossing a coin or drawing lots. Bertie
Long time no write on here!
Hope you are doing ok, what did you go for?
I chose avonex, but only lasted 6 months due to side effects, then switched to plegridy, which was slightly better but again stopped after about a year.
I haven’t taken anything since 2021. Now in a dilemma again, I don’t like the side effects lists that all the DMD’s come with.
I suspect I have progressed as I don’t have what I think is a defined relapse but my leg drags after getting hot and my back hurts all the time, I have numbness in areas, occasional pins n needles. Now I’m fearful of progressing to secondary and loosing my mobility.
I was warned by the neurologist that I my MS was rapidly evolving, but I didn’t think my symptoms were as bad as the side effects.
I am still undecided about treatment but thought it was worthwhile putting my quandary out on here.
It’s not the symptoms now that you need to worry about: it’s the potential ones lurking in the background that might never arrive, might arrive and wreck your life for good, or that might be warded off by an effective DMD. It’s the dilemma that we all have to navigate in our own way as best we can.
What does your neurologist recommend?
Yes, that’s my worry.
The neuro recommended the alternative to ocrevus, I can’t remember the name now.
Is there any reason why you were offered the alternative to ocrevus and not just ocrevus? I’ve always felt that if I needed to escalate treatment ocrevus would be my choice.
Do you mind me asking which alternative therapies you have used? 20 years with few symptoms is rather inspiring!
I think the alternative one is a new version of the same thing, different route of administration I think.
I’ve done lots of things over the years. I don’t know what helped me the most. Things that brought me into my inner peace, dealing with some inner issues was and is a big thing for me.
I’d not seen a neurologist for over ten years as I was managing ok. Then four years ago I started relapsing quite often and had an MRI which showed a heavy lesion load,( but this was only the second one in my life, the first in my mid-twenties), and things have progressed from there. I was warned that at menopause this could happen and I tried beta interferon for a while but didn’t like using it or the side effects, the whole thing stressed me out and that is a trigger for me.
For last three years I’ve been eating a low saturated fat diet, taking N-acetyl glucosamine, coenyme q10 to help with remyelination and energy levels, omega 3 fats & vitamin d &b complex. I also exercise as much as i can, strength and walking mainly.
So lots of things really. Everyone has a different journey.
What do you do / take?