Update with Ocrevus... (long): I had first... - My MSAA Community

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Update with Ocrevus... (long)

Sggmcswain profile image
7 Replies

I had first infusion, the person said I should have a gold star. No reactions! Upper body is great.

Now the not so good, my legs would NOT get me up the steps when I got home. Took an hour to go up about 10 steps. My mother and sister were not happy.

And the other fun, the place is going to have me do 2 weeks of intensive in their place therapy. Me &y sister will stay there in an apt and I have to go through physical, phycological, and speech therapy. Yeah not

I go back in two weeks for the 2nd part. Hope and pray it goes well and this time, I get up the steps!

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Sggmcswain
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7 Replies
CalfeeChick profile image
CalfeeChickCommunityAmbassador

Be patient, it may take bit to absorb and work through your system. Please post updates 🙏

jimeka profile image
jimeka

Sggmcswain pleased that your actual infusion went well but sorry about being too weak to get up the stairs. Maybe that will recoup over time. Blessings Jimeka 🦋 🌈

ssdw1958 profile image
ssdw1958

Sggmcswain Ok I am going to try this again I started to write to you than yes I lost it. Here I go again. I had my first dose of Ocrevus two weeks ago I felt fine until later that night my husband had gone grocery shopping and don’t it figured I got up to go to the bathroom and I couldn’t move my legs. I called my husband and he was on his way home and guess what he was only 15 minutes from the house but the next town next to us was paving the road he was on. He finally got home and he had to help me to the bathroom, then again at 3 am he woke me up at 6am to see if I could walk and I could so I said to him you can go to work. Hopefully you will be doing better in a little bit.

I was a little tired the next day.

But I had my second dose on this past Tuesday and that one was so much better my legs were moving so much better not rubbery at all but don’t do what I did I decided to go out and do a couple of errands. I haven’t done that in a long time well I am exhausted tonight. So I am going to take it easy the next couple of days.

You really need to relax. Good luck!!👍

greaterexp profile image
greaterexp

Sggmcswain , you do deserve a gold star! I’m grateful to learn you handled the infusion part so well. I’m sorry the legs decided not to cooperate, but pray they will agree from now on. Do keep us updated!

Sukie427 profile image
Sukie427

Sggmcswain , as CalfeeChick said, it takes patience. Nothing ever comes easy with this rotten disease. I just finished my balance therapy. Some days I can walk, some days I can't. But the best advice I ever got was from my PT who said, "Never stop moving." So when I sit on the sofa watching TV, I lift 1 lb. weights and work my biceps. I put 1 lb. weights on each leg and exercise my ankles. I swish my hands side to side. I work my shoulders and neck. Just do the best that you can and DON'T STOP MOVING, however you can! Best of luck with the therapy and the Ocrevus!

Nom_De_Plume profile image
Nom_De_Plume

@sggmcswain

Congratulations on completing your first infusion! ⭐️⭐️⭐️

I share the same sentiments expressed by others already, but I won’t repeat what they wrote. I’m surprised about the intensive therapy. Hadn’t heard of this before, but your doc sounds like a good one, so I wish you the best as you slug through that. Yuk. Looking forward to hearing about the benefits you’ll reap, though! 😊

Here’s a shot of strength and encouragement: 💉 lol

dianekjs profile image
dianekjs

Congratulations on completing the first half-dose infusion with no speed bumps, may it be the first step in a new therapy that will work beautifully for you. I'm not familiar with the adjunct in-house therapy approach, but let's hope it turns out to be a beneficial multi-pronged strategy. Best of luck to you and thanks for the update.

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