Last reply 5 days ago
ocrevus

Hi, I’m a 49 year old man diagnosed with MS in August this year. My MS is most likely primary progressive and I have just been told I can start Ocrevus treatment next year. I’m getting pretty worried looking at the list of potential side effects and am wondering if anyone here has personal experience of being on Ocrevus. Thanks

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stumbler
6 days ago

@d1970 , all the Disease Modifying Therapies (DMTs) are powerful treatments, each with a risk profile and a list of potential side-effects. These side-effects have been identified within the clinical trials of the drug, whether they were directly caused by the drug or not. Therefore, not everyone will experience these side-effects,

You just have to weigh up the unpredictable risks of MS against the known risks of the Ocrevus. You will be monitored to mitigate the risk of the Ocrevus, whilst you can do nothing to protect yourself from untreated MS.


itsmewithms
6 days ago

There are a lot of people on this forum on Ocrevus and I understand it is the most common DMT prescribed for the newly diagnosed according to one of Aaron Boster’s you tube videos. If you check out his material on You Tube he review most of the DMTs on the market and is pretty positive on it. I just started it in September.

If you click on the tag on the bottom of your post you will see other posts related to it or use the little magnifying glass in the upper left to search for more-

Good luck! During infusion I had a bit of rash on one cheek and an earlobe got red so they halted infusion for like 15 minutes and then started it back up. In the second infusion no issues at the time or afterwards.


mlgilber1
6 days ago

I’m on it and the only side effects I’ve had I believe are infusion reactions. I’ll get super itchy on my scalp or ears, but the nurses will stop the infusion and give me more Benadryl. Then, they’ll start it back up starting at the slow rate again. My infusions usually last 7-9hrs because of the reactions. Other than that I like it so far. I’ve been on a little over a year and haven’t had any new or active lesions since starting. Some of my symptoms have even gotten better. I haven’t needed my walker since a couple of months after starting. I do get extreme fatigue a month before my next infusion which I’ve heard is common from other people, but most say that lessens over time. I did get a UTI and shingles after the first two half doses since it lowers the immune system, but haven’t had a problem since. Let me know if you have any questions. Good luck.


watsoncraig
5 days ago

Like you I am due to start O in the New Year for PPMS


d1970
5 days ago

thanks for your replies, after more research I’m starting to feel a little less freaked out!


itsmewithms
5 days ago

I’m glad my Neuro agreed to increase the strength of my treatment as he feels I have moved to SPMS. If you watch the Aaron Boster sessions on You Tube he talks about two different approaches to treating MS. One is to basically give the lowest treatment that seems to keep your MS in check and up the strength to another DMT when it no longer seems effective.

The other approach is to start with the most effective treatment and try to prevent any progression. That is the side that Aaron is on while many Neuros (like mine in the past) are in the first group.

To be fair we are fortunate to now have the choice of 15 DMTs of varying strength with differing side effects. When I was diagnosed there were only two options. I was put on the one that he judged would be best and it was likely the best at that time.

However, he also brings up “treatment inertia” or some term like that where the Neuro (and patient) just stick with a DMT because you are on it and it seems to be working ok, even if you have an attack or two your body has adjusted to it and you are comfortable. There is also the risk that when you pull from a treatment you may have an attack and there is time between DMTs and for the next DMT to become effective. So I get that. But looking back I should have been pulled from my first DMT to a stronger one before I did. When I switched to my current Neuro he looked at my notes and MRIs and proposed a change from Copaxone to Rebif ASAP and after my appointment this spring proposed a switch to Ocrevus. Hopefully it stops it for now and then we will see.

On the whole I can’t complain terribly. This is a disease where we all are individuals and will respond and progress at our own pace. I am still walking albeit wobbly sometimes 😉 and for longer distances or uneven terrain I bring a walking stick with (hiking one bought from Cabellas) but for the most part do pretty well. I just don’t want to progress any further 😉 never give an inch is the name of the game.

Good luck 😉 stop freaking 😉

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