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A MyMSTeam Member asked a question 💭
Wisconsin Rapids, WI

Question about Ocrevus side effects

December 17, 2022
 · 
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A MyMSTeam Member

@A MyMSTeam Member my apologies if my reply came off the wrong way, after doing a little more homework back pain was in fact reported in the clinical trial and I am so sorry you are dealing with that. It has worked wonders for me, but not everyone will have the same response. HSCT is no joke so I am glad you are doing your homework, also know that they might not last forever, as there are now cases of people having their MS return after a several years. Also of note a new drug just got approved https://briumvi.com might be an option. I work in Pharma and I HATE drug ads as well. I wish you all the best, as someone who had back surgery before his MS diagnosis I know how miserable that can be.

January 6, 2023
A MyMSTeam Member

It is indeed a side effect, but a rare one. Any other back pain I’ve experienced in my life wouldn’t just go away after sleeping. If I had a pulled muscle, or an IC flare up, the back pain would be worse upon waking. I shouldn’t have waited so long to call my neurologist, but I figured I’d tough it out like all my other pain (TN, migraine, etc.). I was put on a heavy dose of prednisone and there was much improvement. I had just begun Ocrevus in November. I told my neurologist about the back pain after the first infusion, but it was starting to go away when I went for my second. After the second, I felt drastically worse. If I just need more prednisone to get through, it might be worth it for me to stay on Ocrevus... if it actually works. I had no side effects with Kesimpta, but had breakthrough lesion activity and demyelination, so it obviously wasn’t working. Being under age 50, having had breakthrough activity while on a potent DMT, I am a strong candidate for HSCT. The copay is really the main reason why I am willing to try another DMT before doing this. I’ve known many people with blood cell cancers who went through HSCT, and while the megadose of chemo is no picnic, the procedure is lifesaving and life changing. I kind of feel like all these adds for DMTs that either made me miserable or have failed to work for me are inspiration porn. I don’t want to wait until it’s too late to do HSCT. I am a cancer survivor, so cancer risks are always a concern of mine, and unfortunately everything used to treat cancer also poses a cancer risk.

December 31, 2022
A MyMSTeam Member

I have been on Ocrevus for several years, I have never heard of this side effect. Do you get this after each infusion? If not it is more than likely just a back issue, which unfortunately most people will deal with in their lives regardless of MS.

December 31, 2022

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