Hi, I’ve got ulcerative proctitis and have now discovered I have MS (very early stage). My UC was always well controlled, restricted to proctitis, never been on anything more than mesalazine.
Neurologist seems to think almost all DMTs are incompatible with UC. I’m worried my choice may be restricted to copaxone… would have liked to have something with higher efficacy.
Any experiences out there?
Also, what were you told about the interaction between UC and MS?
Hi
Ive got UC proctitis too, I ve been taking Tecfidera since 2015 and have found irlt not only amazing for my MS but also got my UC which was troublesome under contril, fantastic drug Cathy xx
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Thanks for responding! I’ve always assumed the UC+MS thing will be down to some combination of genes predisposing me to autoimmune diseases.
Good to know Tecfidera might be an option. I’ve now seen one neurologist who thinks I might be ok on one of the monoclonal antibodies (-mab) drugs. Opinions seem to vary on this. Interesting that the Tecfidera also seems to have helped with UC. It’s hard to find evidence on the impact of UC medications on MS and vice versa, though I did come across this: https://journals.sagepub.com/doi/full/10.1177/17562864211035542
Hi there. I got Colitis 12 years ago and MS in may this year. I was also very worried about medication and pouchitis etc, but my g.i. said that he thinks Tysabri is ok, and I began treatment in July. I have my next dose Monday and haven’t had any side effects so far.
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PS: I got my colon removed 12 years ago and live with a pouch, so I haven’t been medicated this whole time
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Hi, thanks for responding on this one. We’ve had quite similar trajectories, in terms of UC then MS, but my UC has been a bit easier than yours from the sound of things. I hope living with a pouch has been ok for you. I’d have hoped that removing the colon would put an end to colitis - it’s really the limit to think your pouch could get inflamed too! Hope the Tysabri works. I’m choosing treatment later this week. Will report back here if I get any untoward impact on UC.
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Yes. Unfortunately you can still get inflammations, but I am doing good with the pouch. I wish you all the best, and please explain why you have to make the decision about medicine? In my case I got my MS doctor to speak with my colitis doctor so they could come up with the best option.
Hi, I think for me it’s a joint decision. My neuro is also consulting with his wider team and said he would talk to my gastro. But he did also ask me what sort of approach I would want to take to treatment, which I appreciate. It’s a tough balance to strike - risk of MS worsening vs risk of colitis as side effect. There doesn’t seem to be much evidence to go on. On balance I think I’d rather have colitis, if it could be simply treated by steroids - colitis can “go away” again. But I’d be a bit scared about a colectomy. Just seems a bit drastic. Though easier to live without a colon than without a brain!