Tagged: Adams treatment day
March 31, 2020 at 11:47 am #19510AdamParticipant
My son Adam is scheduled for Ocrevus treatment at Stanford Hospital April 3 & 17. I’m not certain I should take him out in public for his treatment due to the Coronavirus. I’m feeling uncomfortable not knowing if we should go or not. Adam is wheelchair bound. Please advise.
April 2, 2020 at 11:40 am #19529Jennifer (Jenn) PowellModerator
I can truly empathize with how difficult this decision is. I have Secondary Progressive MS and am on a similar infusion. I have been advised not to proceed with treatment due to Coronavirus. I want to emphasize that each individual’s MS is different. My physician made a decision based on my case.
I see Adam is scheduled two weeks apart. That tells me this is his first infusion of Ocrevus. I suggest speaking with his neurologist to discuss your concerns. S/he can best guide you. as to what would be in Adam’s best interest.
Thank you so much for reaching out. We wish both you and Adam the very best.
April 2, 2020 at 11:52 am #19530Ed TobiasKeymaster
Adding to what Jenn has written, the MS International Federation has issued guidelines regarding treatment with the various disease-modifying medications in the current situation. Continuing treatment really depends on the way in which the medication effects the immune system. Here’s part of what the Federation’s website says:
People with MS who are currently taking alemtuzumab, cladribine, ocrelizumab, rituximab, fingolimod, dimethyl fumarate, teriflunomide or siponimod and are living in a community with a COVID-19 outbreak should isolate as much as possible to reduce their risk of infection.
Ocrelizumab is the generic name for Ocrevus. Here’s a link to the full web page: https://www.msif.org/news/2020/02/10/the-coronavirus-and-ms-what-you-need-to-know/
Hope this helps,
July 14, 2020 at 9:49 am #19900Brad ThomasParticipant
FWIW, I had a similar conversation and concern with my doctor. The way he stated it to me was this:
1) we don’t know how Coronavirus will affect you. You may be asymptomatic, or may have lesser symptoms. We just don’t know.
2) we don’t know how the drug will affect you infected with the virus.
3) we DO know you have MS, so not treating it means you run a high risk of getting worse.
So, I took the risk and went ahead with the infusions. I’m curious to hear how Adam is doing now and what decision you made.
July 14, 2020 at 5:12 pm #19904Ed TobiasKeymaster
The MSIF guidelines were revised again about a month ago to reflect the most current thinking that the risks of not continuing most DMTs are greater than the risks of discontinuing it because of COVID-19 worries. The exception might be Ocrevus, because it continuously reduced the level of CD-20 carrying B cells.
I think the decision you and your neuro made is probably the same one that I would have made.
- You must be logged in to reply to this topic.