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Anyone with Jpouch or ostomy taken Gilenya or Tecfidera

Excuse the graphic post. I had an emergency ileostomy done 10 years ago and an internal “jpouch” created 18 months later. I coped well for a few years but lately its not been great. My MS diagnosis was finally confirmed last year and I have been offered a choice of Tecfidera or Gilenya as DMD treatment. Given the most common side effects for both are gastric, I’m terrified. A few days of worse Diarrhoea could make me really ill. I suffer from it on a daily basis already and embarrassingly occasionally have accidents at night or have to literally run to the loo without much warning. I’m thinking that perhaps these options are worse than the MS itself as I seem to be one of the lucky people that suffers from side effects of any drug I take. My kids are upset with me for “risking my health” by not wanting to take them. They don’t see me at my worst when I’m pacing at night with the pain or see me sobbing in the toilet because of the pain and exhaustion. I really can’t face going through it for what could potentially be months. I can’t afford to take the time off work either. I’m also studying part time and can’t afford to fall behind on that either. Has anyone been in this situation? What did you decide and if you took the DMDs how did you find the side effects? I’m going round in circles trying to make a decision and struggling to find anyone that’s had a similar issue. Thanks

Hello

I’m not in the same situation as you. I have taken Tecfidera in the past and didn’t suffer any diarrhoea. And I now have a colostomy. But at the time I took Tecfidera, I was not an ostomite.

I have also been one of those unlucky people who has a tendency to get nasty side effects from drugs too though, so I completely understand your reluctance to take a drug that has the possibility of making your bowel issues worse. (Horrible thought!)

Why not talk to your neurologist / MS nurse about taking one of the other, less effective, but less likely to throw nasty side effects at you drugs? Assuming you aren’t afraid of needles, something like Copaxone might be a better option. I took that and had absolutely no side effects. It only has an average relapse reduction rate of about 30% (as opposed to 50% for both Tecfidera and Gilenya). So it’s not as effective, but it’s also a lower risk.

Alternatively, one of the beta-interferons; they do have the potential for flu like symptoms, but again lower risk balanced with lower efficacy.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid hopefully that will be of help.

Sue

Thanks Ssssue Spookily, the day after I posted this I got a letter from my MS nurse asking if I had made a decision yet. I’ve made an appointment to go back and see her to discuss my options. I’ve now got an infection in my jpouch so will discuss other options like Copaxone. I’ve been struggling with my pouch of late and wasn’t sure if it was the MS or not. I’ve been quite ill over the past week so I now suspect it’s pouchitis. Waiting on a call back about treatment for that so I suspect starting DMDs may be delayed for a while. Thanks again for the advice. It seems silly but I didn’t think about investigating alternatives, I just assumed that the choices I was given was the only options that I had. Lorna