I’m 4 weeks post major surgery caused by a problem related to my intake of Ocrevus. Its been a struggle for the past 10 months finally culminating in surgery to clean up the problems. At one point I was in severe pain and doctors couldn’t figure out what was wrong. I completely lost my appetite plus 10lbs and muscle mass. (I’m a petite person so this was a big deal.) My ability to walk was severely impaired and I was very weak. I live alone and was really scared. The doctor who put herself in charge had tunnel vision that I had cancer…I did not. She put me through several invasive unnecessary tests. I thought I was going to die before any doctor would get it figured out.
Long story short, my family was upset at the lack of urgency of the doctors I was dealing with plus the doctors seemed to be keeping me at arms length due to the complexity. So…my family found doctors at a well-respected teaching hospital out of state a few hours from where they live and persuaded me to get my surgery done there. What sold me was when the surgeons were approached, and the complexities explained, their response was “complicated is what we do!”.
What I wish I had done differently and the reason for this post is related to this: not only did Ocrevus do it’s job of killing my b-cells but it also trashed my immunoglobulins. This left my body pretty much defenseless against infections. I wish I had pushed harder to get off Ocrevus when I first saw how low my immunoglobulins were in 2021. But my neuro persuaded me it would be ok because of all the monitoring she was doing. I’m also older, 65, so my immune system is naturally weaker. There are some research neuro’s that believe that people my age shouldn’t be on the highest efficacy drugs for this reason.
Here is a link to a case that explains what happened to me: sciencedirect.com/science/a... Yes…the guy was only 35 but it explains how they tied Ocrevus to the damage. And since I’m female, I had a bigger mess so more extensive surgery.
This is already long enough so I don’t want to post any more details here. It’s meant as a warning to be cautious. If anyone wants more info, DM me.
I still have a ways to go for recovery but at least I’m with family for the holidays. Hope you all enjoy your holidays!
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Raingrrl
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I'm so sorry this happened to you (and the others on these meds)! I remember reading about the rare issues, and can't believe you had 2 rare issues 😱😱 I hope your recovery goes very well 🙏 Are you recording your blood pressure and temperature every day?
oh my, I’m so sorry. I’ve been following your posts re. immunoglobulin deficiencies and infections. My situation is similar but not nearly as severe. It took a year and a half off Ocrevus before my B cells started to reappear. By this past August they had risen to 2.9% (norm is 10-20). I was feeling optimistic until my November labs B cells dropped back to 1.9% 🤷♀️ The hematologist following me has no clue. My immunoglobulins are normal and other than 3 episodes of shingles, I’ve been ok. Though I am essentially housebound. I’m 64 and petite and wonder if the universal dosing (600mg every 6 mos.) needs to be adjusted for weight and age? How long were you on Ocrevus before your Ig’s dropped? How long were you on it in total?
Thank you for posting this. I hope your recovery is swift and you can feel healthy again soon 🤗
Sorry for the slow reply. Just this week I’ve started to feel more “normal”. It’s been 7 weeks since surgery and I still have a ways to go to build back my stamina and strength. It’s so annoying. I’ll likely do more PT when I get back too because I’ve regressed
I was on Ocrevus for 5 years. The last infusion was Dec. 2021. My immunoglobulins were first tested in 2018 and were normal. They slowly declined from there. I know I’ve have built some b-cells but the last blood tests for that were last Sept. Those same tests showed my IgG back in the normal range after a couple of IVIG treatments. I need to have the tests done again once I’m recovered and back home. I’m still at my family’s place in Wyoming. I’m not strong enough to drive back and have to also wait for clear roads. 😑
My neuro has adjusted my Ocrevus to a 1/2 dose and I only have the next infusion once the blood tests show that whatever Ocrevus has destroyed beyond Bcells is back to a range that can sustain another infusion - typically 8 months instead of 6.
I have been having abdominal pain for a couple of years now, Raingrrl . I am currently trying to get to the cause and so far we haven’t found the cause. Thank you for this timely post, and I will mention my pain to my neurologist. Keep on your road to recovery!
Mine comes and goes, Raingrrl . There is no rhyme or reason why. Hot compresses do help, but not much else. Everything that I consume is suspect. We have ruled out my gallbladder. I am going to see a gastroenterologist this month. I will let you know what it is when I know! Keep Smiling
Your experience sounds a lot like my experience, Raingrrl . Not fun at all, but like I said, it comes and goes. Lately, it has been staying around more!
I'm so sorry to hear of your difficulties. Thanks for sharing your story here. Although I am not on Ocrevus, knowledge is power, right? Sharing is powerful for everyone here, too!
That’s quite a story. I’m sorry you had to go through that and hope your recovery goes well. I’ll read the science direct article so I understand what happened. I’ve been on Ocrevus for four years ever since I was diagnosed. I haven’t noticed any greater propensity for illness. My PPMS hasn't progressed except for the first year post diagnosis
PS I couldn’t figure out how to direct message you on the site lol.
Thank you for the information and so sorry you had to go through this. My bloodwork typically comes out all right but I feel that I have some kind of low-grade infection all the time. Take care.
Thank you for sharing with us of your difficulties and struggles. Sounds like you are pushing forward and staying positive 🤞🏼. Always good to hear what is going on with everyone and the DMT’s they are taking and effects. Take care 🙏👍🏼😉🥰
i'm so sorry you've had to and still are going through this. i'm really happy you listened to your family and the hospital was able to find out what was wrong. i think most neuros have "tunnel vision," whether it's about their pet illness or treatment. i hope you have a speedy recovery and thanks for informing us.🤗
Unfortunately, my neuro wasn’t the only doctor treating me that had tunnel vision. I’m still angry with the doctor that put herself in charge and then sent me down several ridiculous rabbit holes. I’m planning to file a complaint about her when I finally return home. I’m still recovering at my family’s place.
do you file a complaint with the doctor's office, something to do with insurance, online or what? i ask b/c there is a particular doctor who didn't just pretend i was insane and write me off. because of him, i had to get my hip replaced in my 30's.
The doctor I want to complain about is part of the larger for-profit medical organization that my primary care and neuro are a part of. I’m going to first see if I can find an avenue through which to complain through the organization. I’ll also write reviews on the various health websites to warn others. I haven’t decided if I’ll go so far as complaining to my state’s medical board.
hmm those are good ideas! i hope they listen. doctors need to do a better job of listening to their patients, as we know more than anyone else about our bodies.
So very sorry you are going through this Raingrrl . I hope that you continue to get better. I'm glad that your family advocated for you and got you to a different hospital with different doctors. Keep us updated on how you are doing when you can.
oh my i have been on it since 2017 may ...will have to call and talk to my doctor .,,,thank you very much for posting all of this and i also read the info you said to read for more information...thank you ...
so sorry Ocrevus turned out to be so toxic but glad you were able to get new docs and appropriate treatment. I just started Mavenclad which also depletes B cells but my doc says it has a different mechanism than O. It just stops them from replicating instead of destroying them. idk. we'll see. Please keep us informed.
Sorry you had problems with Ocrevus. I have been on it for three years now. No problems so far but in 2010 I was diagnosed with colon cancer and now I am cancer free. I cannot go backwards. Get better soon and thank you for the post.
Raingrrl, Something very similar happened to me this past August. I've been on Ocrevus about 2 years this last time. My neurologist just warned me that because of my age, at 63, I had to watch for infections that could lead to serious illnesses. And I swear not more than 6 weeks later I wind up in the hospital with a very serious blood infection with a UTI, two kidney stones, and a partially collapsed long, I spent 2 days and in the ICU, then another 12 days in the hospital before they would let me go. It was a real mess and I have never been so sick. I hope to never be that sick again. My neurologist does not want me back on any DMT's unless my MS starts getting active By showing new lesions or inflamed areas on my next MRI.
I hope your recovery keeps going in the right direction and you feel better in no time at all. Thank you and sending good thoughts your way. Fancy59.
Fancy1959 I’m so sorry you had serious infections too. I’m now 7 weeks post major surgery and still not my “normal”. Hindsight being 20-20, I wish I had pushed my neuro harder to take me off Ocrevus in the spring of 2021 when I had recovered from some weird, though not serious infections. My immunoglobulins were close to the low end of normal but my neuro said that I was still ok. I trusted her opinion but I sure paid a big price for that. I could have likely avoided the whole mess I found myself in. 2022 was pretty much a lost year for me.
that’s awful and I’m sorry that happened to you and you are still fighting though this!!!
As someone on O it’s the “I hope that’s not me” that you think about but brush off until you know someone or you are that someone. Thank you for posting and I hope you have a speedy recovery ❤️🩹 from all of this!!
Thank you! I read all the risks before agreeing to take it but know now I didn’t really understand the implications of a greater risk of infections. In 2017 when I was looking into it, the infection risk was described in terms of primarily a risk of respiratory infections not the mess that happened to me. My situation is an illustration of what can happen with a newer med. The trials don’t uncover everything due to their limitations.
Raingrrl glad you're pulling through this mess. You're courageous.
I agree with your warnings on Ocrevus. It's a very significant treatment. I'm still on it because it has stopped my ms in its track but I'm also carefully monitored because it destroys a lot more than my B-cells.
My neuro does a blood test (sometimes several) until my immune system recovers before ordering the next infusion. This is why i am on a 1/2 dose of Ocrevus and only maybe every 7/8 months.
Also for my hip surgery, the surgeon had me wait 10 months prior to having surgery so that I had a strong immune system to recover from the surgery. I went back on Ocrevus 2 months after the surgery.
Thanks for your reply. I wish my neuro had monitored my immune system as carefully as yours seems to be. I don’t wish what I went through on my worst enemy. Surgery was unavoidable but risky because my immune system was still messed up and part of the surgery was exploratory based on my primary surgeon’s best educated guess. She turned out to be right but was also surprised at the extent of the mess.
That's terrible to have something meant to heal cause more damage. None of us should have to experience this. I hope you recover rapidly and find a DMT that works better for you. I'm on week two of Mayzent. I've called in twice already with side effect symptoms. I hate being a pest BUT they are the pros... but more importantly it's my health. We have to advocate for our selves!
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