First appointment for Ocrevus 10/3/17 - My MSAA Community

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First appointment for Ocrevus 10/3/17

ssdw1958 profile image
21 Replies

Hi all I had my first infusion for Ocrevus th, first I was given two Tylenol tables , Benadryl thru I V then a dose of steroids. Then the Ocrevus I was I was told if I have any feelings of scratchy throat any itchy feelings to let them know.

Well when I was given the Tylenol the pills were large and I had difficulty swallowing them and while I was having the treatment I started to cough and a nurse not mine but another nurse was near me and Hurd me she immediately called my nurse and the treatment was stopped. I told her that I believe it was because of the Tylenol pills I took a few sips of water and then felt better and we started again. When you are given this infusion someone is always there to make sure you're alright. Time lapse I started every thing around 7am -7:30am it was all done by about 1:30pm-2pm during the procedure I slept most of the time but they do check your vitals so it's not really a great sleep. I will say I had no issues with the administration of the medicines. After we had had lunch and got home I took a nap. My legs felt a little week, then as the night progressed my legs were extremely weak. At one point I was unsure if I could be left alone the next day. Well I got up one time during the night which was not good my legs felt like jelly I went back to sleep and my husband woke me up at 6am to see how I was doing. I took a walk to the bathroom. Thank goodness I was so much better. I had my breakfast took my shower was a little slow but that was normal. The one thing that bothered my a few years ago I had followed on my right knee and now I could feel that more than usual. But I have some good news before the treatment the muscles above my knee would hurt so bad and be extremely cold and I would need to have the heating pad on them constantly. I have to say I only had the heating pad on them once during the day YEAH that is a good thing and on my right hand I can snap my fingers so much easier. So so far so good.

Next does in two weeks.

One more thing that hospital was so cold I needed to be wrapped up in blankets. I will let you know how things are going.

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ssdw1958
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21 Replies
melack01 profile image
melack01

I am so glad everything went well. It's wonderful that they were taking such good care of you that even a cough would have somebody checking. Praying that this treatment is the answer for you and that the next one goes well..

ssdw1958 profile image
ssdw1958

Thank you it finally feels good when you take a medicine and it does something for you.

WAshingtongirl profile image
WAshingtongirl

This is excellent news, ssdw1958 ! Praying for only improvement here on out. 💕

ssdw1958 profile image
ssdw1958 in reply to WAshingtongirl

It is something to smile about

greaterexp profile image
greaterexp

Wow! That’s wonderful and encouraging news! Thank you for letting us know how the first infusion went. We will keep you in our prayers.

ssdw1958 profile image
ssdw1958 in reply to greaterexp

Thank you. I am now four days later I am a little tired but it is funny I want to get up and do stuff around the house but that's in the morning which isn't bad, I have to push my self and make my self do any thing if you know what I mean. Life is to short just to sit around.

WAshingtongirl profile image
WAshingtongirl in reply to ssdw1958

So it sounds like you have more energy or drive to do things than you did before the infusion? That's great news! Rest, don't overdo it! Praying you continue to feel even better with each new day, ssdw1958 . 💕

SometimesCrazy profile image
SometimesCrazy

Great news. I will start mine in a couple of weeks and that post has helped me to ease my mind. I am such a worry wart in the new MS me.

Thank you so very much!!

ssdw1958 profile image
ssdw1958 in reply to SometimesCrazy

I totally know what you mean I was so nervous, while my husband was driving into Boston I asked him are you alright to drive he replied That he was tired I said to him that he needed to pull off the road and I would drive. We switched places and I drove in let me tell you if that didn't get my blood flowing nothing would. People drive nutty in Boston so I joined in and we were on time.

So if you are still able to drive and want to drive that's one way to know you are awake. I joked and said my blood pressure would probably be high but it wasn't 😂 LOL but don't you worry I didn't drive home with all that Benadryl in my system I was the one falling asleep.

SometimesCrazy profile image
SometimesCrazy in reply to ssdw1958

I lived in Bridgewater MA for five years so I am well aware of the drivers! LOL I work. I am getting mine on a Thursday. Hopefully by Monday, and a Provigil 200 mg, I will be rested enough. All I can say is FINALLY! Yah. Have a nice weekend. I will be thinking of you.

ssdw1958 profile image
ssdw1958 in reply to SometimesCrazy

I know your Area also my son is going to BSU what a small world I will say a prayer for you.

SometimesCrazy profile image
SometimesCrazy in reply to ssdw1958

Lived. I am now in Reno but a prayer is still much appreciated!

ssdw1958 profile image
ssdw1958 in reply to ssdw1958

Oh you got out of the cold smart lol

WAshingtongirl profile image
WAshingtongirl in reply to SometimesCrazy

Let us know how you do, SometimesCrazy . When is your first infusion? You may have posted this elsewhere, but it would take me forever to find it. 🙄💕

SometimesCrazy profile image
SometimesCrazy in reply to WAshingtongirl

I will find out this week.

Yooper profile image
Yooper

Ssdw1958: Hoping all goes well and your strength comes back. We can only hope those of us doing Ocrevus will see improvement. God's blessings and peace.

ssdw1958 profile image
ssdw1958 in reply to Yooper

I do have to say things are getting better and I hope it gets better bye for now

Sukie427 profile image
Sukie427

Sounds positive--hope all continues to go well. You're in my thoughts and prayers.

ssdw1958 profile image
ssdw1958 in reply to Sukie427

Thank you things are going well

Msmermaid profile image
Msmermaid

Thank you for sharing this account. It is very soothing for my nervous soul!!

ssdw1958 profile image
ssdw1958

I just wanted to let you know I am doing pretty well with my knees before I had the infusion the muscle above my knees were constantly freezing and in pain but now they are not in that kind of pain and not cold that’s a real good thing. But being in the path of the hurricane Nate now a tropical storm the humidity is high and the temperature is 74*f it’s October granted I like the warm weather but the humidity can drop at any time. But other than that I am doing pretty good.

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