I’m starting DMTs, but the choice is unusually complicated.
Basically, I can have a “highly effective” DMT (probably kesimpta). But since I already have ulcerative colitis, there is an (unknown) risk that the DMT might cause a colitis relapse. In the worst case scenario if this does not respond to treatment, I could end up having my colon removed and a “pouch” fitted - two major surgical operations, not a nice scenario.
But the alternative is to opt for a less effective treatment (gilenya). And on balance I’m keen to hit the MS hard and fast, from everything I’ve read.
Any thoughts?
For those of you with more active/advanced MS, would you have risked your colon to avoid it?
That’s a tough situation. There’s an old saying about the art of holding on to political power: survival is all about shooting the shark that’s closest to your boat. From what you say, you feel that the shark closest to your boat - the one you need to shoot first - is poorly-controlled, active RRMS. The other shark is out there, circling, but at an unknown distance: you can figure out how to shoot it when you need to. In your shoes I think I would feel the same.
I think all you can do is to wring out of your medical advisors as much hard understanding of the relative risks as they can possibly give you. Doubtless you have done that already. Do you have a good GP? Hospital specialists can tend to have a narrow focus, while a good GP can look at you as a whole person. In the end, it’s your decision, and whatever you decide will be a well-made decision, taking account of the limited info and great uncertainties. You can do no more.
Hi Alison,
Thanks, as ever, for your answer. You are such a godsend on this forum!
Yes… I think my neurologist has told me what he can, which is more or less what I can find by online search. As so often in medicine, “we don’t know” is the honest answer.
I’m not even sure why they assume that the colitis cases in people on B-cell depletion are caused by the drug - rather than e.g. a genetic susceptibility to autoimmune diseases.
Part of the problem is that forecasting MS itself is so hard. I wouldn’t say my MS were poorly controlled at the moment. What worries me is the future. My understanding is that the timescale is unpredictable, but sooner or later we are all pretty much destined to go downhill (as things stand). And I’d rather shove that time off as far as possible. If I thought my MS would stay as it is now, I wouldn’t take the risk - but that seems unlikely.
So if the risk were “colitis relapse”, I’d take that. The question is more whether the relapse would be treatable, without the drastic measure of a colectomy. And that information is hard to come by.
It doesn’t help that my gastro has just retired and I have no proper contact with gastroenterology these days. The UC diagnosis has had next to no impact on my life so far - it’s a different kettle of fish from MS.
My GP is great, but I doubt she’d know how treatable drug-induced colitis is either. Nor would I really trust my local hospital to know what they were doing with it (or anything else “unusual”). If I did get symptoms I think I’d travel to a larger city and check myself in there…
I’m just not sure, as things stand, how to go about getting in touch with a really experienced gastro for an opinion/contact. Preferably without going private - spent so much already!
I suppose part of me thinks, it is possible to live without a colon and still do most if not all of what I do. Whereas MS is going to force major change on me, sooner or later.
That said, a colectomy really is irreversible…and it is sometimes done in an emergency as a life-saving thing - emergency surgery having worse results on average.
Perhaps I should ask my GP to refer me to a (better) gastroenterology team than the one I’m now under. They probably think I am a bit of a pushy patient, but my health has got so complex, I’ve lost confidence in letting the NHS just take its course.
I also note that while the less-effective option Gilenya might be less risky for colitis, its own side effects are no picnic.
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I am sorry that you have such difficult decisions to make, not the least of them being how urgent you feel it is to get started on an effective DMD. Given that you are not going to get 100% of the info you would like to make you confident (because it doesn’t exist) there is a case for getting on with it sooner rather than later, I guess. It is always so hard when no risk-free options are available, and the irreducible uncertainties loom large.
Thank you for your kind comments.
Gosh! What a difficult choice! Do you know what the difference in effectiveness is between Kesimpta and some of the other effective DMT’s and what the difference is in terms of a colitis relapse?
I suppose you could start with another effective DMT and then switch to Kesimpta in light of any further relapse
It’s basically kesimpta and all the other anti-CD20 DMTs that could be a problem for colitis, as far as I know. The case reports are to do with ocrevus (and even more so rituximab), but that might be because those drugs have been around for longer. And nobody knows the actual “risk” of colitis relapse (as in, is it 1%, 10%…). Nor, importantly, do we know how easy a colitis relapse would be to treat.
I’m not sure about nataluzmab/tysabri - that might still be an option, but with PML risk.
Similarly, I imagine cladribine might be ok but it’s not usually a first-line therapy in the UK I think?
So that leaves me with less effective options for MS. Also not ideal.
Yes, I could start “less effective” and possibly switch up.
Only, it seems a shame to lose the chance to treat the MS early with an effective drug, for the sake of this serious but very vague risk.
Tysabri is an interesting thought. I’ve been on it for 12+ years and it’s great. It is important to know you JC virus status, but if it’s negative, your PML risk is very low indeed and with luck stays that way. Even if your clinical presentation does not quite reach the Tysabri criteria, they might stretch a point for you, given the special circs. Worth thinking about.
Hi Alison,
I’d thought about Tsyabri for a year or two. Interested to hear you’ve been on it for 12+. It did give me pause for thought when I saw the appalling report on this forum of a woman who died of PML, having been on Tysabri for many years. It’s obviously a “real” risk, even for people who are presumably being monitored for JC. She had what everyone thought was “the first flare in a long time”. Nobody at the hospital she went to seems to have thought of PML, it all sounded quite botched - more or less what I would expect from my own local hospital. Perhaps there’s not much they could have done anyway.
I’ve also seen wildly different estimates of the risk for those who are JC negative, ranging from 1 in 1000 to 1 in 10000…
How often do they test your JC virus status? Do you need to do extra MRIs for it as well?
The Barts Guide is a reliable source of information and might answer some of your questions.
Understand your risk of PML with Natalizumab (clinicspeak.com)
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MRI every year. JC virus test every 6 months. There was not any JC virus testing when I started, but I was in such trouble that I would’ve started regardless.
Having said that, understanding of JC virus risk has come on leaps and bounds since then. Knowing what we know now, I am not sure that I would have started on Tysabri, had the tests (had there been any) shown that I was JC positive. But if I had had the benefit of hindsight and known how well I would do on Tysabri, maybe I would have started regardless of my JC virus status. I’m just glad that I didn’t have that decision to make! The trouble is, you don’t have the 20:20 vision of the retrospectoscope when you’re making the hard decision, do you?
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One thing I am confident of: given how badly my MS was going, if I had not gone for Tysabri, I hate to think what shape I would be in now. It has been a wonder drug for me.
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Choosing a medicine is like picking a toy. Some toys are super Fun but might break easily, while others last longer but aren’t as exciting. You have a toy (medicine) that could be really good for your MS but might upset your tummy a lot. Another toy won’t be as fun (effective) but is safer for your tummy. It’s like deciding between a super cool rocket that might crash or a sturdy toy car. It’s a tough choice, and it’s okay to ask friends (doctors) for advice!
This won’t be much help but I feel for you in your difficult position. I suppose that if it was me I would also be wondering what are the chances that even with Kesimpta or similar I still get some MS symptoms plus colitis flare up.
Do you have an opportunity for a long(ish) discussion with your consultant and/or MS nurse about all possible outcomes?
My best wishes to you
Why not one of the DMD That is administered IV? All these drugs have nasty side effects. It’s picking the best out of the worst.
All the DMTs targeting CD20 have the same issue. In fact the known cases of colitis so far have been in other anti-CD20s as far as I know, not kesimpta. To be clear, the risk is tiny in most people - just sporadic cases. But it was more of an issue for me as I have a pre-existing diagnosis of colitis. I wasn’t offered alemtuzumab/natalizumab/cladribine.
In the end I took the risk and I am on kesimpta, with some additional precautions. If anyone else is facing this issue (pre-existing IBD diagnosis & choosing a DMT) feel free to get in touch.
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