I was just looking for the latest Ocrevus news because I had a voicemail from my neuro's office regarding Ocrevus. I had thought we were going to discuss it again at my next appointment in August but the voicemail made it seem that he is going forward to get me switched. I have been unsure that Ocrevus is truly safer for me. I've explained this fear in other posts but basically its that its hard for me to believe that switching from Tysabri to another immunosuppressent drug is safer in terms of PML and other infection risks. I don't understand why I wouldn't carry my current risk profile forward with the new drug.
Finding this article is the fuel for me to get another appointment with my neuro to discuss DMT's. I'm at risk for PML being JVC+ with a high index and 5 years on Tysabri. At the moment I'm feeling damned if I do, damned if I don't. I'm so frustrated with this!!
Yes...I realize that the patient in the article only had one dose of Ocrevus. It doesn't lessen my fear of switching from Tysabri to Ocrevus and being vulnerable to PML for some unknown period of time.
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Raingrrl
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I try to be my own advocate but feel like I'm way outside of my comfort zone with this choice. When I switched to Tysabri 5 years ago, it was a simpler situation. Copaxone stopped working and Tysabri was my only option back then. I was JVC+ from the start but my risk of PML was lower too. So I was ok taking the risk. I've grown more uncomfortable over time as my risk increased even though Tysabri has kept me mostly stable.
I have many questions now about someone switching from Tysabri to Ocrevus and not just because of PML risk.
I'm certainly not an expert on this, but can only relay what my Neuro said. He is the director of the MS Clinic at UCSF. He said he would not recommend anybody that is JCV positive to stay on Tysabri or Tecfidera for more than two years because it would increase the risk odds of developing PML. Also, I have read that the medication has residual properties that stay in your system for a while. As with any meds, discuss with your Dr. and do your own research.
Thanks CalfeeChick ! There seems to be a lot of disagreement amongst neuros about the PML risk and course of action. I'm just not convinced that switching from one immunosuppressive drug to another improves my odds. I realize that the 2 drugs operate on different parts of the immune system but I don't know enough about the immune system to evaluate this.
I have questions too, Raingrrl , and I hope Im not making your anxiety even worse! Are you expected to get PML since you are positive and have been on it so long? Would the risk or expectation of getting PML be less then, after a certain time frame off of Tysabri? If so, when are you in the clear? Will switching prevent the rebounding of symptoms that happens to some people when stopping Tysabri?
I'm sorry you have to deal with this stress 😞 Having another chat with your neuro is the right thing to do! GL, XO!
Hi kdali ! Ask away! If I don't want to answer I won't.
My risk of getting PML has increased over the years but it's not a given that I will get it. My risk would lessen once Tysabri is completely gone from my system. BUT what I don't know, and can't seem to find discussed, is what happens to my risk by switching to another immunosuppressant.
My neuro already increased the interval between Tysabri infusions from every 4 weeks to every 8 weeks. This is meant to help lower my PML risk. I feel like such a lab rat and am tired of it.
Tysabri operates on the T cells and Ocrevus operates on the B cells. Both give you a higher risk of infection than the average person. Do they both up the risk of PML in someone like me is my big question. I don't know if even the researchers can answer this if they didn't have enough people in my situation in the study. I know they didn't have anyone my age in the study because I'm over 55.
Is it any wonder my insomnia is at an all time high?
Raingrrl, it's Fancy1959. I switched from Tysabri to Tecfidera for about 2 years, until my MS progressed to SPMS but my risk of developing PML picked right back up when I went back on Tysabri. So taking time to allow the Tysabri get completely out of my system did not re-set the PML risk factor! I was on Tysabri for over 2 weeks 1/2 years and my JC Virus count started rising and the infusion started to make me sick and it was getting progressively worse over the past 5 months. So my neurologist did a comprehensive blood work study and now I am due to start Ocrevus sometime in the next several weeks. I plan to contact my neurologist MS Nurse Coordinator Tuesday to see how bad my blood levels were. Something sure lit a fire under his backside to push me through to Ocrevus so quickly. Good luck with your therapy. I think many of us feel like lab rats! But at least there is a lab conducting research at an all time high rate. Think of people even 15-20 years ago that were diagnosed with MS who had absolutely no therapy options to turn to to help stem the rise of their MS disability. MS was all but a death sentence so I guess I feel like we are truly blessed to have the therapies coming out at such and amazing rate! Lab rats of MS therapies unite! 🐁🐀 (That's to cute to be a rat but that's the best I could find!)
Hi Fancy1959 ! I love your reply! Its the reminder I needed that in the midst of all the risks that capture my thinking, I should also remember how far treatment has come from the time I was diagnosed in 1999. Sometimes I get mired in my resentment of the risks of these new drugs and fail to see the forest for the trees. Without Copaxone in my early years, I would be much worse off and without Tysabri, I would have progressed when the Copaxone stopped working. So...I need to think about how well I've done 17 years post diagnosis and that is due to the treatments available. It doesn't make my decision about Ocrevus any easier but it sure gives me a better perspective. Thank YOU!
Hi Ikeeptrying ! I was diagnosed in 1999. I went on Copaxone soon after. When that stopped working 5 years ago, I was put on Tysabri. I’ve only had one really bad flare up that left me with one of my worst symptoms. I’m still RRMS and have stayed relatively stable.
I was diagnosed 19 years ago with RRMS and it has now slipped into SPMS. I was not offered any treatment when diagnosed. Amazingly I have very little symptoms from MS. But I'd like to go on medication now before it does get worse. But guess what--there aren't any. Just like when I was diagnosed. grrrrr
Ocrevus does kill B Cells -- however, there is a reason it is being called a wonder drug,
If my explanation is lacking please call Genentech -- they are quite helpful.
1. It has a very high affinity for CD20 producing B cells, leaving older and younger B cells un affected -- allowing you to retain your humoral immunity.
2. It has a higher activity on the B cells it attaches to because it is fully humanized and attaches to different epitopes then Rituxan (which is part mouse).
3. It does target CD20 expressing T cells -- however they are a small subset,and are implicated in a co-inflammatory cytokine cascade that along with the CD20 B cells causes the inflammatory and protein generating process that demyelinates and prevents correct re-myelination.
4. I have been on ocrevus since May 2018, 1 month after diagnosis, and the worst thing I've had is the same crud going around right now as every one else.
As a male diagnosed at almost 50, the numbers say i'm PPMS -- however, I have not had any physical decline, and a 2 cm ovoid white lesion disappeared after 4 months with no black hole.
Hi newonocrevus ! You might not have noticed but this is a 2 year old thread. At my neuros urging, I switched from Tysabri to Ocrevus and had my third Ocrevus Infusion at the end of November. My last MRI shows my condition is stable but I was stable on a Tysabri as well.
Thanks for the explanation of the mechanism of Ocrevus. Hadn’t seen it explained quite like that before. I knew it killed off B cells that express CD20 but was unaware of any direct affect on T cells.
I’m still concerned about PML risk. Only time and a larger population on Ocrevus will tell that tale.
There was a study that showed that people on Ocrevus derive less benefit from vaccines compared to a normal population. Makes sense when you think about the action of a Ocrevus. I’m considerably more careful now to try and prevent infection and illness.
I can certainly understand your fears as I tested positive for JC as well. The risk factor for me kept me from Tysabri altogether. The risk was way to high. Now there is one case of pml associated with the Tysabri Ocrevus switch and who knows for sure what triggered it for certain. Has me very concerned. I have to honestly hope it was not related to Ocrevus. I have been quite weakened since the second infusion of my initial dose of Ocrevus. I fell today for the first time in quite awhile. Fell right out of my rv, down the stairs, head first into the grass. I am a little sore. That was the worst fall I have ever experienced.My overall feeling prior to the tumble has been pretty good after the second infusion apart for the weakness and that has been improving over the past few days. Tomorrow, I imagine, I will be very very sore. Back of my head feels like I got whacked with a 9 iron. My clumsiness never ceases to amaze me. 🤕
Aw, I'm so sorry about the fall. Hope you can take it easy today. 🙂 I did a little bit more reading yesterday about the case of PML and or orevus. The doctor reported it as he felt that the PML was the results from the Tysabri not the Orecvus. maybe he didn't want to put a bad light on the Orecvus. I printed out all 48 pages of the Msaa 2017 report and will try to read more today. Feel stronger and better real soon.🤗🌈🦋
Hi Allen5280 ..I'm so sorry about your fall. I've had a few bad falls myself over the years of dealing with M.S. I'm blessed that I haven't broken anything but I've gotten pretty banged up. I have multiple small scars over my left eye because of falls. I've had some really awful black eyes.
I also hope the one case of PML was not related to Ocrevus but no one can know for sure if it was just the Tysabri or not. And if the studies didn't include people that are JVC positive both with and without a history of taking immunosuppresants, then there is no evidence about PML risk for people like me to my very limited understanding. A brilliant research neuroscientist I once knew said something I always think of in situations like this "absence of evidence is not evidence of absence".
Raingrrl I am Jc positive and was on Tysabri for six years. I did great, until BOOM my risk suddenly became hugely dangerous. That was the end of a good thing. I tried Copaxone for a second time, made me very sick. Tried Tecfidera, made me even more sick. My neuro says he will not put anyone on Ocrevus for at least two years. I am going on a rather steady drug, Plegridy, an injection every two weeks. I hope you find the answer you are looking for. Remember, YOU make the decisions, not your neuro. Stand up to him if you have to. Kelly ps keep us posted
Hi @DianneB...Thanks for your concern. I originally posted this 10 days ago. This past Thursday I had an appointment with my neuro just to discuss Ocrevus and my issues with it. There is another lengthy post where I shared some of that discussion.
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