OCERVERUS TREATMENT

[traveljaff]

Has anyone started OCERVERUS? Please share experience, side effects etc. I am starting my first dose on 5/22. Would love to hear from others.

thank you

[Jesmcd2 CommunityAmbassador]

Hi traveljaff our friend Allen5280 has started on it and is giving g us updates on how it's going for him☺ You can check out his posts and ask him questions about it!

Jes 🌠

[LAS3]

I started 4/30/17 and received my second infusion on 5/10/17.

[erash in reply to LAS3]

LAS3 tell us more...how's it going?

[traveljaff in reply to erash]

just took 1st dose Monday. feeling weak, a lot of spasms and pain. also developed uti right after, started me on macrobid for uti. not sure if macrobid is adding to the spasms or if it is from the ocvrevus. I will give it another few days and see.

[traveljaff in reply to LAS3]

ANNNDDD???HOW WAS IT? ANY REACTION, SIDE EFFECTS ETC? PLEASE DO TELL.

[Pink-1]

I would like to hear from someone already taking Ocrevis as well

[Allen5280]

I had my first infusion on 5/4 and my second is set for Thursday the 18 of this week. I have been posting how it has been going for me regularly had some issues but being so early in the process can't be definitive it was due to Ocrevus. I believe after the next infusion I may have more answers. Other than a really bad bout with spaticity, I have been doing pretty good with it. That is saying a lot due to my hypersensitivity to medications... side effects... I get more of them than I do not. So far I am pleasantly surprised. That and I have had several very good days that I am so thankful for. My neuropathy and trigemial neuralgia is considerably less.

[traveljaff in reply to Allen5280]

thank you. I suffer with severe spasticity. And a few years ago I also had a bout of worsening. WHICH right now I don't think I could take.

Other than that it is good to hear you don't feel worse. I too am very sensitive to medications, and have pain and spasticity which is my worst symptoms. I am looking forward to giving this a chance.

Good luck, I will let you know how I do.

thanks again

[Elle61 in reply to Allen5280]

I'm waiting to get funded for it...please keep me posted on how your doing . I'm hoping to get a life up with this new drug.

[LAS3]

My first infusion I had side effects such as constant headaches, weakness, fatigue, and nausea which lasted about three days. With my second infusion, it seemed as if the side effects were more intense, and lasting a lot longer. But with that said, in my opinion it helped tremendously with the tremors, fatigue, pain, and weakness from ms. So, in my opinion,it was worth it.

[Allen5280 in reply to LAS3]

Oh I did forget I had some vertigo during my infusion and a second time a couple days after but I get vertigo from time to time anyhow so other than during the infusion I'm not sure. Reading that LAS3 had a worse experience for the second infussion... ugggghhhh... there goes my anxiety... 😂... tears of fear and laughter... if I can't laugh at all this sometimes... I think I would loose it completly...

[LAS3]

I forgot to mention that when you begin treatment, they divide the dose (300mg) between two weeks, then you receive the full dose six months later. I believe I said this in the previous post, the side effects were no joke ! I am still recovering from the infusion that I received on the 10th of May. I will try to keep you all informed as I recover. I KNOW how important this is because we all are fighting to regain some sort of quality of life.😌

[Allen5280 in reply to LAS3]

Well I had my second infusion on the 18 and am doing ok with it. Just have been completely exhausted and sleeping a lot. I have been able to do a little more over the past couple days and seem to be improving slowly. Other than some vertigo the first couple days and the weakness which seems to be improving I am doing pretty good. So far much better off than the other 3 dmt's I have been on.

[WAshingtongirl in reply to Allen5280]

That sounds promising, Allen5280 . My prayer is that you continue to improve and feel better. 💕

[Allen5280 in reply to WAshingtongirl]

Thank you WAshingtongirl

[LAS3]

I am glad you are feeling ok. I am in the Deep South and the heat is no joke! My ms symptoms have improved, just have to remember not to over-do it. Since Ocrevus is only every six months, I will stay with it, my worsening ms symptoms have dramatically improved. 😊

[traveljaff in reply to LAS3]

Glad to hear that, I am feeling a little better today, day 4 after 1st infusion. I too am in south, south Florida, very hot this weekend over the mid 90's. Hoping I will improve a little each day. But Dr. said not to have false expectations. I rather call it positive thinking.

Stay cool

[rlh1974]

Question for all of you that have had the infusions. Are you RRMS or Progressive MS? I am progressive and have heard that ocrevus is awesome RRMS but progressive....... eh

So, if any of you could share, I would be very grateful!

Love to all,

Rob