I think where I left off in my Ocrevus tale of woe was after my major surgery but before I got my latest MRI, blood tests and neuro checkup. Thankfully my MRI showed nothing new and my B cells are back in the normal range. However, when my gamma globulins were tested, I still have hypogammaglobulimia which was caused by Ocrevus. Having very low antibodies leaves me still susceptible to all kinds of “fun” things.
Last week I had a long overdue dermatologist checkup. I’ve had all kinds of odd skin issues and probably should have scheduled the appointment sooner. At the checkup, I was diagnosed with eczema in several locations that first appeared when Ocrevus was causing me all sorts of trouble 2 years ago. I never had that sort of problem before. And even worse, the dermatologist also found some skin cancer and I now need a MOHS procedure.😡 I don’t have a history of cancer myself or in my family and I don’t spend much time in the sun.
I’m writing this post because both the diagnosing dermatologist and the surgeon told me that these skin issues are not uncommon in people on B cell depleting drugs like Ocrevus. The surgeon told me that he has several patients that come in for regular treatment due to being on B cell depleters.
So if you are on any of the immune compromising drugs, like Ocrevus or Rituxan, etc., keep an eye on your skin!
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Raingrrl
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Oh, Raingrrl. I am so sorry to hear that Ocrevus isn't done with you yet. 😠 I wish you the best. Let us know when your MOHS surgery is! Thank you so much for sharing this with us so we can be more vigilant.
These are serious drugs with the potential for multiple adverse reactions, so it's important to keep up with cancer screenings: annual GYN visits for the ladies (and tell them if you are on a B cells depleter), and colonoscopies for everyone! Know the potential adverse events like colitis, and tell your neuro if something seems off. Always advocate for yourself, because sometimes doctors don't even know the problems linked to these drugs.
Kesimpta and Briumvi are also B cell depleters, and S1P modulators like Gilenya (fingolimod), Mayzent, Ponvory, and Zeposia can be linked to skin cancer if I'm not mistaken.
It's good that you went to the dermatologist. I finally bit the bullet and went in for a skin check this summer, and I made next year's appointment before I left so I can't put off following up. I'm fair skinned, and even though I don't spend much time outside, I haven't been good about sunscreen. And it seems there are so many high UV days now! A bonus of sunscreen is that it can help keep the skin on your arms from thinning. Steroids also contribute to this. My forearms are often covered in big bloody-looking marks from broken blood vessels caused by the tiniest trauma. The skin tears really easily, which sucks when you love cats. Normally, I wouldn't have to worry about this until I'm about eighty. But I'm 58.
At this point I’m living proof of what the Mayo doc told you. I’m still hoping for improvement but being realistic at the same time.
I went to an immunologist yesterday. I was mostly looking for advice on timing all the vaccines I need given the state of my immune system. After hearing my story and reviewing my test results from 6 months ago, he ordered new tests. (B cell counts and immunoglobulin counts.)
He also said if I start getting sick a lot, he’ll put me on IVIG treatment. That has its own risks.
Well…the immunoglobulin counts came back and are still below the low end of the range. 😡 The B cell count results will take a few more days.
my recent B cells are low at 24 same as when I saw Immunologist at Mayo in May. I am getting a response to vax's though (based on lab titers). How good/protective, IDK.
Hi Raingrrl, and thank you for this post. So sorry you are dealing with all this. Your story really hit home for me. A few months after quitting Kesimpta, I started to get huge lumps in my armpits which I thought was my lymph nodes. It wasn't. After a year of tests, tons of blood work, ultrasounds, CT's and five different doctors, I thought I'd lost my mind and would never know what was causing this swelling. Finally, finally, I went to a dermatologist last month. He did a biopsy of the swollen areas in my armpits and it came back showing a skin condition called "scleredema" (not to be confused with "scleroderma"). He said it is very possible that it was triggered by a B-cell depleter like Kesimpta. Can't know if it was the Kesimpta for certain, but the powers that be still don't know all the long-term side effects these drugs can cause. Quite scary. You are spot on to bring attention to the possibility of seeing a dermatologist. It took me a year to connect the dots and get in to see one for a biopsy. Sending healing hugs your way! 🤗
Hi CatsandCars. It's been a year since I started having all the skin issues and, unfortunately, could be here to stay, although it's better than it was last year, so maybe another year and it will disappear! When I went in for the biopsy results last week, at first it didn't make sense to me. But after a long conversation with my dermatologist, I started to think about the B-cell issue. One of the causes of scleredema is it can be triggered by a virus or infection. I didn't have an infection, but with a malfunctioning immune system and my six months of Kesimpta, the DMT could have confused my immune system even further making it think it was fighting off a foreign body and sent me into a tailspin. As I said in my other post, I can't know for sure, but when I ran this theory by the dermatologist, he said it sounded quite plausible. These B-cell depleters are very serious drugs, as you know, and still have side effect mysteries we've yet to discover. Take care. Sending hugs 🤗
I hope your skin issues go away. I agree that serious side effects of the B cell depleters are still being discovered. Unfortunately, the drug tests will never reveal all the side effects because they are limited by the cohort of people tested and length of the test.
I’m 67 so going on Ocrevus was a risk because it had not been tested in my age group. I wish I could have stayed on Tysabri but my JCV index got too high. Still 5 years on Tysabri never caused me an issues.
Ugh, so sorry you’re going through this! I was actually going to post to ask if anyone was experiencing skin issues from MS meds. I’ve been on Rituximab for 5 years and it’s doing a great job controlling MS. But I’ve noticed a few skin problems; eczema on the back of my thighs, eczema around one of my eyes and my skin has been breaking out so bad 😭
I asked my neuro and he said not related to meds. I just don’t believe it! I don’t have anything else wrong and I don’t take any other meds. I haven’t noticed any skin lesions yet, but looks like I’ll be going to a dermatologist just to be sure!
No…I’ve been off of it for almost 3 years and my immunoglobulins have not recovered. (Those are your antibodies.) My neuro is ok with just monitoring me for now. I will not go on any B cell depleters in the future either.
I'm so sorry 😢 Ty for sharing! I knew of the skin cancer risk with Ocrevus and started skin checks when I was on it. I hope more see your story and get checked out! I have had great results with aquaphor on my kid's eczema, after a soak in the tub, and keeping the area covered.
Thank you for sharing this with us. I am on Ocrevus. I am going to talk to my neurologist about this. I have a dermatologist but I haven’t talked to her about Ocrevus and the effects on the skin. I will at my next appointment. I wish you the best. 🙏🙏🙏
Not good. I still have the cough. My primary care physician has been really helpful with bloodwork and watching for problems. I also have anemia. This was discovered about a month ago. It showed up in my bloodwork. My PCP is having me see a hematologist this Tuesday. He is also having me see a specialist at the infectious disease center in the hopes they can help with the cough. That’s on Wednesday. I am having more trouble walking due to the anemia. I get very dizzy.
How are you doing? Do you still have Covid symptoms or are you recovered?
I'm so sorry. It's incredibly hard to keep your emotional equilibrium when you're that sick for that long! I hope that the infectious disease doctor and the hematologist can help you.
My problems pale in comparison to yours, but I'm having trouble coping. Ever since I discontinued Ocrevus, I predictably had an increase in MS symptoms, largely leg and neck spasticity (although I had kind of hoped that would get better without the Ocrevus) and brain fog. When I started Mavenclad, I had to ask my husband when I should take my medications, because you have to avoid taking any other meds three hours before and three hours after it. I've been taking meds for so many years, but my poor brain could not handle that math problem. I started Deep TMS for depression around the same time, and I've really struggled with feeling very out of it. The symptoms only improved a little when the Mavenclad was out of my system, so it probably isn't from that. I suspect it might be from the TMS treatment, but I can't find anything about it causing cognitive problems. The TMS doctor says that it can cause "fatigue", but that would go away when the treatment is over. I was incredibly lucky in that I really didn't have Covid symptoms, I just felt an increase in fatigue and my legs got stiffer/weaker depending on which muscles are doing what. I know that increased MS symptoms are normal after any infection, so I don't expect to feel energetic ot anything. But the degree of cognitive fogginess, which started before the Covid, is worrisome to me. I don't think there's any reason that it wouldn't get better. It just freaks me out that it's been five weeks since I could do my modest exercises/normal activities. I imagine you're feeling that way, only sicker. 😢
I wish there was a way to decouple the emotions from the physical problems. I should really try to work on just trying to stay more positive. If you're sick, you're sick, but being irritable frustrated just makes everything worse. At least I'm not having pelvic pain! And I feel frustrated with my husband, although he really isn't doing anything wrong. He's been helping me with household stuff and making meals and doing his best to be supportive. He's just healthy and living a normal life, which for some awful reason really irritates me!
I really hope that you feel better soon. I will be praying for your recovery.
I won’t know until all of the tests are done at some point next week. I did have a chest X ray on Wednesday that showed that the fluid in my lower lungs is back since the hospital. I will keep you updated.
I was on Ocrevus for 4 1/2 years. In the end I was immuno compromised. My skin’s a train wreck. My esophagus dangerously inflamed, same for my stomach and I have ulcerative colitis. Contracted three bouts of C-did which was trying it’s best to take me out of this world .I have six new prescription and IvIg infusions twice a month the past two years to stay alive. These drugs are no joke and can rock your world in a way your don’t wanna rock. I’m sorry for being so blunt. I’m on no MS drugs. I have PPMS and am somewhat stable, but I have to live with the debris that Ocrevus left behind for life. I certainly understand what you’ve been through and want you to know I’m for you.
I’m blessed…without my Jesus I wouldn’t have made it.
I'm really sorry to hear that Ocrevus had such a huge negative impact on your quality of life, robster1. It's okay to be blunt. I'm glad that your faith is sustaining you. ❤️
Robbie…it’s totally ok to be blunt. I was on Ocrevus for 5 years. I’m still immunocompromised after being off it for almost 3 years. I too will live with the debris from Ocrevus for life. 😡 I carry a lot of anger about this.
Ocrevus wasn't around when I was diagnosed. I used to wish it had been, now I am not so sure. I really feel for all of you trying to balance the good and the bad while on it.
I have mixed feelings, too. I've felt a little envious of people getting to start out on high-efficacy drugs from the beginning, which has been shown to reduce disability. I was on it for two and a half years until this summer. It really seemed to be making my spasticity worse rather than better, but being off of it does not seem to have helped. (We'll have to see how the Mavenclad works!) Some people do really well, and others are seriously harmed by it. I hope that more research will help to sort out how to reduce the risks!
I have been following your Mavenclad journey and quietly cheering you on! 😊 More research needed on so many things. It feels like a guessing game at times.
Thank you, Greentime. All cheers are welcome, quiet ones included! ❤️ It does indeed feel like a guessing game. So much progress has been made, but more needs to be done!
Thank you for your post. I hadn’t heard any thing about skin problems due to ocrevus. I have been on Ocrevus for 7 years. Due to a very bad bout with Covid which put me in the ICU my neurologist suggested I take a break from the infusions until I got stronger. It’s been 10 months from my last infusion and I am reluctant to start back on it. My bladder is better and my leg but the fatigue and brain fog are much worse. There is a new drug in clinical trials called Tolebratinib. My neurologist thinks this might be an option for me. I’m wondering if any one else has heard of it?
It's a BTK Inhibitor, which experts are hoping could be a game changer for MS because they can penetrate the brain, which many current therapies can't do. Some clinical trials of other BTK Inhibitors have shown mixed results so far.
So, you wouldn't know for sure if it would help you, but I think the way it would work is you would have early access to a potentially game-changing (or not) drug, or another therapy like Aubagio, and you probably wouldn't know which one you were getting.
i am so sorry you're going through all of this! the skin cancer sounds really scary. i'm glad you went to see your dermy and they caught it, but that is terrifying. my heart goes out to you.
I too have skin issues on my face. It’s awful when I don’t treat it with good lotion. I have’s been to the Dermo YET. Thank you so much for all of the input. If something crops up I’ll be sure let you know friend
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