I was doing a google search tonight trying to find information about switching from Tysabri to Ocrevus. I have been wondering if there are any issues going from immunosuppressent that operates on T-Cells to one that operates on B-Cells. I have no medical background so I don't have any idea if this can be an issue or not.
While doing my search I found the prescribing info for Ocrevus. Unlike the hype in the media, it has some facts from the studies about the incidence of cancer in the Ocrevus treated patients in the study. It also talks about the incidence of reactions to the first treatment despite the use of premedications. 30-40%!! Allen5280 ...looks like you have a lot of company with first dose reaction!
Here is the link for anyone interested in reading it:
If anyone runs into info about switching from Tysabri to Ocrevus, please post it or DM it to me. This decision is keeping me awake a night despite my neuro's enthusiasm.
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Raingrrl
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Hi this is ssdw1958 I got the info transferred to my email account if you should find out about more information about tysarbi can you please pass it along I am also on it. Thank you.
Raingrrl thank you! Great info. Wondering if those thinking of starting Ocrevus have had or are going to first get the shingles vaccine (and hep b vaccine)?
@erash I had my regular Tysabri infusion yesterday and knew that both my neuro and my PCP had ordered blood tests but didn't know which ones. It turns out my neuro ordered a TB and a Hep B & C tests amongst some others. When I saw that he had ordered those, I assumed that it was in preparation for Ocrevus. There would be no other reason to have me take those tests. I'm kind of annoyed because I haven't agreed to start Ocrevus. We are supposed to talk about it at my next followup in August. I was figuring that having a few more months to check it out would help me make a better decision. At least I hope so.
I thought I had a Hep vaccine at some point but I'm not sure. Because I'm on Tysabri, my doctors won't let me have any live vaccines which the shingles one is. I fear getting shingles because I had a nasty case of chicken pox when I was about 10 years old.
Raingrrl ive never read that the severity of chicken pox as a kid increases likelihood of shingles. I think your risk would be no different than others (and of course increased due to immunosuppressing drugs 🙁)
I haven't had the shingles vax either. Ocrevus does seem to have a fairly significant inc. risk tho. Hep b and TB risk looked similar to rebif and less worrisome.
The efficacy % looked good but that's compared to rebif 🙁
Did u find out if a washout was needed after Tysarbi?
Yeh, I'd be a little annoyed too about them testing you and not discussing what/why 🙁
I read an article last week that suggested post marketing adverse effects usually took an average of 4 yrs. after any new drug came out to be more fully known.
By the time we'd wait 4yrs, a newer drug would be available, more waiting? and disease progression could be more irreversible 🙁🙁🙁
That is one thing my DR mentioned. I do get cold sores and she said those would explode! oh fun! No loving on the wife But in all seriousness I have never had the Chicken Pox and I am 42. So this one scares me a lot!!!!!!
Hi @erash...I did ask my neuro about a washout period if I switch from Tysabri to Ocrevus. He said that he wouldn't put me through a washout period but would schedule the first Ocrevus dosage as a replacement for a Tysabri dose and then it would be Ocrevus going forward.
I'm already on a 8 week Tysabri schedule instead of 4 week intervals. This is due to my high JCV index. The theory is by extending the schedule, it gives my immune system a tiny amount of time to recover a bit and theoretically give me less chance of contracting PML. Is it any wonder I feel like a lab rat most of the time?? Hence my disappointment that Ocrevus doesn't have the much touted safety profile when you look under the covers. IMO.
I was tested for Hepatitis, TB, and HIV in preparation for Ocrevus infusions. erash , my neurologist was actually not pleased that I had received the Hep A&B vaccines a few years ago and questioned why another doctor had ordered it (it's complicated). The Hep B vaccine is controversial, particularly with MS and other autoimmune concerns, and many docs generally do not recommend it unless you are at an increased risk of exposure.
Raingrrl , I was still undecided about starting Ocrevus when my screening tests were ordered also, but my doctor preferred to go ahead and get the ball rolling since we were considering it. He assured me that getting screened in no way obligated me and it made sense to me to have things ready to go.
I have had serious reactions to a couple of vaccines in the past (in fact, the Hep B vaccine was one of them), so I wasn't inclined to get the Shingles or pneumonia vaccines pre-ocrelizumab. Then again, my doctors didn't suggest it either.
The more serious complications that have occurred with ocrelizumab in trials and with rituximab have been associated with concurrent or recent treatment with another immunosuppressant drug. However, risks of serious adverse consequences are still quite low statistically. Best of luck if you decide to move forward. 🍀
dianekjs Again, Your knowledge is vast, Thank you! I also have issues with vaccination. Last time I got a flu shot, I was sick for 3 weeks. See, I am the 2%. Just the wrong kind.
Also, to another point of yours. My Dr also got the ball rolling with the HEP and HIV tests. It is no way obligates you to take the Drug. Also, These are good things to know about yourself. I am on the edge of the age bracket for HEP. So its good to know I am clear.
Raingrrl Thanks for the info. Those of us on the fence can not have enough info!
dianekjs not sure I understand the concern re. The Hep B vaccine? It is not a live attenuated vaccine. CDC does not indicate need for caution for immune suppressed ppl
I had the hep series long ago as a requirement for hospital care workers
Hi dianekjs ... you are right. The blood tests are required prep and don't mean I have to go forward with Ocrevus. I'm just cranky because the blood draw on Friday was extensive since both doctors ordered tests and my arm is stilling aching today.
I'm lucky that I don't tend to react to vaccines. My PCP gave me the pneumonia vaccine a few years back as a precaution and I had no problem with it.
Raingrrl Thank you so much for this info. I am seriously considering Ocrevus as I have PPMS and no alternatives, but as I consider it I want to go forward with my eyes wide open. Your info helps me with that.
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But in all seriousness I have never had the Chicken Pox and I am 42. So this one scares me a lot!!!!!!
Ocrevus without steroids
Ocrevus? 
Ocrevus
Ocrevus 
