Another fun potential Ocrevus adverse event?Watch out for watery diarrhea as a sign of colitis.

[CatsandCars]

I saw an Ocrevus commercial tonight while watching TV, and I noticed that they said Ocrevus can cause colitis. I don't remember that being in the patient drug info when I started Ocrevus in 2022. Do any others on Ocrevus remember being told about this, or is it new?In any case, most people have recovered with conservative treatment, but it looks to me like two people had to have all or part of their colons removed. One of the articles said it was rare, but to me it seems like those on Ocrevus shouldn't delay contacting their doctor if they experience watery diarrhea. I'm not a doctor though, so ask yours if you have questions.

journals.lww.com/acgcr/Full...

[kdali]

I think it's a new issue for longer term patients, so it's been added to the list of issues. I doubt it's only 2 that have required surgery by now.

[CatsandCars in reply to kdali]

At least a few of the cases were after a couple of infusions. Sometimes it wasn't their first DMT, which isn't surprising. But it's really sad. MS sucks.

[kdali in reply to CatsandCars]

Infuriating to be taking something to help MS, but end up with guts being removed as a price 😢

[CatsandCars in reply to kdali]

Yeah, it is.

[Diva1976 in reply to kdali]

IKR, it’s sad that we are subjected to side effects possibly when being treated for something else.

[Raingrrl in reply to kdali]

There are far more than 2 patients that have required intestinal surgery due to Ocrevus or Rituximab! Just counting the people in a Ocrevus Harmed group I belong to can easily get into multiple digits. It depends on how quickly the colitis is caught and unfortunately there is a lack of awareness amongst doctors and neuro’s that B cell depleters can cause this. 😡

[kdali in reply to Raingrrl]

Awful! 😢 That group is a small collection of users, and I wonder too how many others in the world had issues but the cause wasn't linked to the medication 🤔

[CatsandCars in reply to kdali]

I was thinking the same thing.

[CatsandCars in reply to Raingrrl]

Thank you for sharing that. I think it's critical that patients know that this is a risk, and that if we choose to be treated with Ocrevus and we experience anything unusual we should contact our doctors. Unfortunately, we should also be prepared to fight with doctors and demand/seek a timely second opinion in the event that something really seems wrong and we're not being taken seriously, as in your case, Raingrrl.

[Raingrrl in reply to CatsandCars]

You are right on! When something unusual happens while taking these meds, it can be verrry difficult to be heard. It’s been upsetting and concerning to me to learn the hard way how little a lot of doctors understand about the immune system and the affects these high efficacy drugs can have. Covid caused a lot of immune system research that has helped but there are still big gaps.

[Helpmeup]

Thanks for sharing. I have been noticing more and more ads on TV for all kinds of drugs. Some of the side effects are downright scary, which is why they say them so fast hoping nobody actually understands them. I think pharmaceuticals would come packaged in a huge box if all the possible side effects were listed! There's an ad for a particular diabetes drug that has a big song and dance number, which makes me crazy. Diabetes can be so devastating, and I cringe every time the commercial is on thinking why on earth would a company want to run an ad full of singing and dancing about such an awful disease. Grrrr!

[CatsandCars in reply to Helpmeup]

I agree with everything you've said. All those happy diabetics make me cringe, too. While I am certainly grateful for having highly effective treatments available for MS, I don't like the drug commercials. The US and New Zealand are the only countries in the world that allow prescription drugs to be advertised to the public. I guess there are a few positives in that people can learn a treatment is available for their condition, or learn another downside to their Ocrevus infusions. But they steer people toward newer, more expensive drugs, when sometimes an older, cheaper drug would work, and doctors should really be the ones suggesting the drugs, not the drug companies who will profit. The endless litany of drug commercials and all the awful side effects are something I could do without. They give me anxiety about being on Ocrevus and make me fervently hope I won't need any of the others! I also have grave doubts about the celebrity endorsements of drugs, which seems completely unethical. Of all the things that go into a decision to take a drug, knowing that a particular celebrity uses it shouldn't be one of them, in my opinion.

(Sorry, Jamie-Lynn Sigler. I loved your work on the Sopranos!)

[BettysMom in reply to Helpmeup]

I just saw that commercial this evening. It was totally ridiculous. I thought WTH, why a song and dance routine about a medication?

[whwiechm in reply to Helpmeup]

I completely agree. The ads go over the side effects very quickly, but if you listen carefully, for some drugs a side effect is DEATH. Sure makes mke want to try that drug

[CatsandCars in reply to whwiechm]

Exactly! Well put, whwiechm.

[Helpmeup in reply to whwiechm]

I heard that too!!! Death is one heck of a side effect!!!

[Greentime]

I totally agree with everything. And who wants to be accosted with drug ads while escaping reality with a favourite show!! And are we supposed to be influenced by a celebrity as some are with fashion?

,

[CatsandCars in reply to Greentime]

Yes, Greentime, we should be able to escape in peace, without reminders of illness and possible death stalking us multiple times throughout the course of one show!

[Tazmanian]

Thank you

[CatsandCars in reply to Tazmanian]

You're welcome, Tazmanian.

[stepsforNeeC]

Thank you so much for this insightful information!!!! I have been on Copaxone for years and not really having too many problems!!! Nobody likes injections sight soreness but I think I’ll “stick and stay “ at my age! If I continue to stay stable I may just continue eating healthy, exercise and vitamins! Just my thoughts.

[CatsandCars in reply to stepsforNeeC]

I hear you, stepsforNeeC. Stay well.

[kycmary]

I am on O started my 6 th year this past Jan. I know they have to list every thing that happens in the trails. I agree if any thing out of the ordinary happens your DR. need to be told immediately. Hope this helps. Mary

[Raingrrl in reply to kycmary]

Part of the problem with the drug trials is they limit who can participate. So it isn’t until the drugs are approved and out in the bigger population that you start seeing side effects not found in the trial. Colitis and hypogammaglobulinemia are 2 of the side effects not originally listed in the risk literature for Ocrevus.

[CatsandCars in reply to Raingrrl]

You're right. People older than 55 come to mind, for example. And everyone is different.

[Raingrrl in reply to CatsandCars]

Yep! And I’m 66 so I’m forced to choose from drugs not tested in my age group. 😡

[CatsandCars in reply to Raingrrl]

I hope that will change! There are more aging people with MS, and the debate over whether it's safe to discontinue DMTs at a certain point has been going on for about five years. So the neurology community seems to ne slowwwly waking up to the existence of patients over the age of 55, and Aaron Boster says there are now some trials being done in older people. We shall see.

[Raingrrl]

I started Ocrevus in 2017. Colitis was NOT listed as a possible side effect back then. I can also tell you that the risks of hypogammaglobulinemia were not mentioned either. I ended up with the latter unfortunately and got very sick. 2 years after my last infusion and my immune system still hasn’t recovered.

[CatsandCars in reply to Raingrrl]

I remember your experience well, Raingrrl, because it was so harrowing. I wish I understood more about hypoglobulinemia. After a year and a half on Ocrevus, my IgM was already below normal, and my IgG was at the lower limits of normal, although my neurologist's office called to say, "Everything is normal. Um, you're not having a lot of infections, are you?" Way to inspire confidence, right? It's been just over two years, and I have a new doctor, and I guess we'll see how my blood work looks this time. But it is concerning to me.

[CatsandCars in reply to Raingrrl]

I hope that your immune system recovers soon, Raingrrl. You've been through so much; it must be hard knowing that you're still susceptible to infections after your ordeal. For me, that would be anxiety-inducing. Best wishes.

[Raingrrl in reply to CatsandCars]

I just had another blood test to see where my IgG, IgM and IgA are at. They are all still low and I haven’t had an infusion for over 2 years. Weirdly my b-cells are back into the normal range but in the low side. My neuro says there is no way to know when the immunoglobulins might come back.