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A MyMSTeam Member asked a question 💭
Aston, PA

Since starting Ocrevus, in December, my husband has had more issues. He was able to walk short distances with a walker now he can not even stand up anymore. He had lost sight in his left eye a couple yrs ago. Since starting Ocrevus, he has now also lost sight in his right eye. He also has a lot of hallucinations. We have been married 28 yrs, and after Ocrevus, he has forgotten who I am, on an almost daily basis. He has also lost all control of bladder and bowel function. Has anyone else… read more

October 22, 2024 (edited)
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A MyMSTeam Member

Yes. I didn't even know what was happening and that it started right after starting ocrevus. Of course I didn't want to believe it because of the praise it gets as being one of the better dmts. Back at the end of Feb of this year I started my first infusion and then the second beginning of March. I don't have a gallbladder so I usually toggle between constipation and loose stools. However, I had diarrhea for months after the infusion, losing over 15 percent of my body mass, from 155-130 lbs in that time frame. I've lost muscle mass as well. Things that were plump before are seemingly dried up like a raisin. Solids and fluids get stuck in my chest causing an uncomfortable pain in my chest and back and since I have other comodalities such as Trigeminal and Occipital neuralgia along with jackhammer esophagus (swallowing disease) and severe lpr, everything triggers everything else. Funny thing is, this all started with fibromyalgia. All doctors test could come back normal by their standards. However I was positive for the leukocytes for immune-mediated colitis but upon results of biopsies taken... Normal, again. Colitis doesn't just go away like that but I believe that the hype of ocrevus or given to ocrevus makes doctors biased and dare I say a bit incompetent. They seem unwilling to contradict it even when they see and have records of the damage it causes, I'm assuming because it's not textbook obvious like another Ms sufferer. If it's not in their books, it couldn't possibly be happening.

I hope that your husband found some relief, help or something to help him through these challenges. 🤗

July 12 (edited)
MyMSTeam

I'm sorry to hear about your husband's experience. While I can't provide personal anecdotes, I can share some information about Ocrevus (Ocrelizumab) based on my knowledge base:

Common Side Effects
- Infusion reactions: headache, dizziness, fever, nausea, itching, rash, flushed skin, low blood pressure, fast heartbeat.
- Show Full Answer

I'm sorry to hear about your husband's experience. While I can't provide personal anecdotes, I can share some information about Ocrevus (Ocrelizumab) based on my knowledge base:

Common Side Effects:
- Infusion reactions: headache, dizziness, fever, nausea, itching, rash, flushed skin, low blood pressure, fast heartbeat.
- Infections: skin and respiratory tract infections.

Rare but Serious Side Effects:
- Severe infusion reactions.
- Increased risk of some types of cancer.
- Progressive multifocal leukoencephalopathy (a viral brain infection).
- Malignancies (cancers).
- Immune-mediated colitis (inflammation of the colon).
- Severe allergic reactions.
- Reduction in immunoglobulins (proteins that help fight infections).
- Increased risk of life-threatening infections.

Administration:
- Ocrevus is administered by intravenous infusion every six months after initial loading doses.

Important Considerations:
- It's crucial to discuss any new or worsening symptoms with a healthcare provider.
- If the neurologist is not addressing your concerns, seeking a second opinion might be beneficial.

For more detailed information, you can visit the official Ocrevus website or consult the prescribing information.

October 22, 2024

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