I am 76. I have been on Ocrevus for 6 years, after being on copaxone for 5 years. I use a walker and need to self cath. Two years ago I was diagnosed with microscopic colitis. I’m not sure if this is a side effect from the infusions. I am debating about stopping the Ocrevus. I have an infusion scheduled in 2 weeks. I’m wondering if any one else has stopped the infusions at my age?
Thank you,
Linda
I am sorry, but I am not your age (yet...still got 46 years to go 😅). I've was on copaxone 5 years, tried on tysabri which I could only do once after they found I'm highly JCV positive, so back on copaxone I went until after I had to go into hospital for 27 days! Started ocrevus not long after being discharged, and I felt great! I still feel great after I've had a dose, and I'm looking at going on the one that you inject yourself at home once a month! I can't remember the name of it, but I'm hoping it'll have a great outcome for me 😁 I wouldn't stop the ocrevus yet, but dicuss this with your MS team for their thoughts on stopping it. Good luck 🫂
Kesimpta is likely what you’re thinking of, very similar to Ocrevus but with a different dosing schedule and delivery method.
Thank you 😊 I knew I know the name, but my mind was like *connection lost* sound 🙄😒
You are most welcome. The generic name of the drug is ofatumumab. I actually run a group for MS patients on Kesimpta on FB, although I'm not personally taking the medication. I was on Ocrevus for four years and started the group when Kesimpta was new, we have over 2,000 members now last I checked.
What's the group called? I'm going to join it 😁
"Kesimpta/Ofatumumab for MS," not sure if providing a link to it is allowed or not, but you should be able to find it in a FB group search. I have an Ocrevus group as well, it is just called "Ocrevus (ocrelizumab)" and has 8,400+ members. 🙂
Thank you ❤️🫂
Cwright, Thank you for your reply. I’m glad the Ocrevus is working well for you. It has worked well for me too these last 5 years.The colitis has been debilitating for me. My neuro said it could be a side effect. So far he’s been on the fence about stopping the Ocrevus. The once a month injection sounds convenient.
Wishing you well!
Thank you so much! And that's a bit of a worrying side effect 🤔😬 I'm happy I don't get side effects from anything (so far 🤞) It's good how you've been on it for 5 years! I've only been on it 2, and after each infusion I feel like I'm back to my old self, but that's possibly because of the prednisolone they give you beforehand 😅I can't wait to start kesimpta! It's looking like I'll be able to start it around the time my next ocrevus gets done in November! I got a letter from my MS team saying that kesimpta us available on the NHS now, and if I'd like to switch to it I need to give them a call. So, I've looked it up on the BNF, compared ocrevus to kesimpta using data from the BNF, discussed it with my new neurologist, and then I decided yes! I'll try it out! 🙌😁
Good for you! These decisions are always so hard to make. Wishing you well!🙏🤞
Here's a good article on this subject.
multiplesclerosisnewstoday.....
I’d be aware that this very small study generated a lot of controversy and division among MS specialists, patients, and researchers. It doesn’t adjust for individual variability in disease severity, age at onset, and many other things. My specialist directs a busy MS clinic at a major medical center and feels quite the opposite. Sixty is young! I had my first lesion at age 54 and by 57 had more than 40. I’ve had zero new lesions since starting Ocrevus soon after, but I now use a wheelchair and have significant disability. My neurologist has emphasized that no two cases are alike and that I will absolutely require continuation on an effective DMD until I’ve been stable for at least ten years if not indefinitely. It may, however, be possible to cut back on dose frequency and possibly size over time. This decision needs to be case by case in consultation with an experienced MS specialist neurologist familiar with individual medical history.
You're spot on with your comments about the study in that article - this extract says it all (at least it does for anyone who knows a bit about studies).
"A total of 35 patients were included. Most were women (68.6%), with a mean age at diagnosis of 42.1. The majority of patients had mild to moderate MS with a median EDSS score of 3, and 80% were receiving treatment with glatiramer acetate or interferon-based medications."
So, they had a very small number of people who had had a mild course of progression of their MS over around 20 years, had very low EDSS scores when the study was done, and had been on the oldest and most ineffective meds for a long time. It almost sounds as if they could have been on no meds at all for 20 years and still had the same outcomes reported . I certainly wouldn't be making any decisions based on such a small and unsubstantial study.
I'm sorry to hear about your disease progression, I was diagnosed at 53 with 3 lesions on my brain and 2 on my cervical spine, I've had one relapse resulting in a new lesion. I only take 9 mg of low dose naltrexone and watch my diet and exercise. I believe everyone's ms is different.
Here's a copy of the original article I referenced.
consultqd.clevelandclinic.o...
Thank you for the article.What a beautiful dog. German Shepards are such good dogs.
One of the problems with many clinical trials is that they have not/ do not include people who are older than 55yo so there is very little data on meds in older cohorts. Despite a few studies claiming otherwise, one thing that has been happening is that a surprising number of older people who stop their meds after having been stable for some years suddenly start throwing new relapses into the mix - so there is among some of the more proactive neuros a view that if it ain't broke then don't risk breaking it by changing things around without a damn good reason - i.e. don't take older people off their meds unless the risks of staying on it outweigh the risks of stopping. And as there are no 100% reliable crystal balls there is no way of predicting who might suddenly chuck a relapse into things if their meds are stopped. Any decision to stop meds needs to be based on individual patients' clinical history and current circumstances.
I can't see any likley relationship between your MS and your microscopic colitis except that people who have one inflammatory auto-immune condition tend to be more likely to also devleop another one. What have your doctors told you?
I believe colitis was recently added to the list of possible Ocrevus side effects, it came up in my Ocrevus FB group.
My doctor told me it’s possible that it is a side effect. I have been happy with the Ocrevus. Just can’t decide about switching to something else at my age. My neurologist doesn’t have a definitive opinion on it so far.
Thank you for your reply.
gene.com/media/product-info...
Here it is, now listed under side effects, "inflammation of the colon or colitis."
Thank you!
I've been on ocrevus for several years now my neurologist wants to try home infusion I'll let everyone know if it happens
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