Ocrevus

[nanderson81]

I have PPMS. I take Ocrevus two times a year. I feel like s**t for 5 of the months. Does anyone feel like this?

[mrsmike]

I take Ocrevus also and I have to say I see no difference at all. Don't feel great and don't seem to have any time where I feel like it is helping at all. Have mentioned it to my neuro but didn't seem too concerned. Time to find a new neuro??

[jimeka]

I have PPMS and I have been offered Ocrevus but I am extremely sensitive to drugs so I look forward to reading others replies. Blessings Jimeka 😊

[rjoneslaw]

I dont have PPMS but I would like to hear what others say

[kdali]

I am RRMS, and have had Ocrveus 3 times, each one being a different experience. I am worse now because pregnancy caused progression, but I did not have a catch up relapse after delivery, so it is working for me. I did feel horrible about a month before the last infusion, and I just started feeling a bit brighter a week or two ago...but who’s to say it’s the drugs fault and not lack of sleep. I don’t feel anything like I did the first time I had it. I also don’t feel, look, or move like I did 5 years ago 😔

[jorrell]

I have RRMS with a doc that thinks I may need to be "upgraded" to PPMS. I have taken Ocrevus for the past two years, but last month I refused the infusion due to the Corona Virus. My neighbor caught it and required immediate brain surgery to save his life. It will take him a year to recover, at best.

Now, back to the Ocrevus, I am feeling much better after skipping the last infusion. Yes, I've had odd medical / mental events, but they are short term.

[Raingrrl]

I’ve been on Ocrevus for close to 3 years. I seem to experience a month long crap gap in the month leading up to my infusion. For the other 5 months I just feel normal. {my normal).

[ahrogers in reply to Raingrrl]

I have also been on it for 3 years and felt my normal until just before my July infusion this year when I first experienced the crap gap of mostly more fatigue. My progression has definitely slowed down compared to the 2 years before I went on the Ocrevus trial. Originally diagnosed with RRMS so was on Gilenya and Rebif prior to Ocrevus with definite worsening of symptoms and more lesions on MRI. No new lesions on MRI for 3 years now but there has been a very slow progression of weakness and fatigue. I know some people actually had improvement of their symptoms but I do feel fortunate to at least have progression slowed down.

I also like the convenience of just twice a year infusions. Plus the copay assist program covers all but $100 of my annual deductible.

[Raingrrl in reply to ahrogers]

During the crap gap it is fatigue that increases the most. And that affects my other issues like vision and balance. They are all intertwined.

[erash]

Felt amazing O for 3 doses. Then symptoms began progress. No real benefit 4th, 5th doses. Symptoms continue progress...pandemic! Skipped July infusion. Symptoms continue progress. I am going to resume O

By the way I either have spms or ppms 🤷‍♀️

I wonder about kesimpta Not approved ppms,

? Approved active spms

[pamgarner]

yes, my dr. said 15% of all patients experience this,he said his patients call it the"Crap gap" you can get it at 5 but talk to your dr.

[stam]

I have PPMS and on ocrevus for 3 years. It didn’t help until the third infusion. In fact I almost stopped it until then. But it has slowed progression and no new lesions on my last MRI. I am now experiencing the crap cap about a month before infusion. But otherwise I’m happy with O.

[JTZES]

I also have ppms and been on Ocrevus for 2 years. I have not had any issues until the 5th month. It's not supposed to make you feel better or help your symptoms. It is a DMT which sounds like it is doing it's job for many of us stopping new lesions. It will not stop current lesions from getting worse.

If you do the math on days between infusions it works out to be every 5 months not 6. The insurance companies are the ones controlling that because there would be additional infusions if you're on it for it for a long period of time.

I would discuss this with your doctor about possibly changing to another DMT.

[carolek572 CommunityAmbassador]

I have been on Ocrevus since February 2018. I have PP'ms' and I find that Ocrevus has been wonderful to me, I haven't had the feeling that Ocrevus stops working prior to my next dose. 'ms' is different for everyone, and we all have our own experience with this disease. Let your neuro know of this development. Keep Smiling, nanderson81