Ughhh! : The Pain! The Agony! The Defeat... - My MSAA Community

My MSAA Community

9,441 membersβ€’21,227 posts

Ughhh!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
β€’27 Replies

The Pain! The Agony! The Defeat of Happiness! 😭😒 l felt like l was hit by a Mack truck! Or someone gave me steroids, and l didnt know. (They didnt, l checked my chart) lts been a week since my O infusion, and during that wk, OMG if there had been a fire? I would have just watched it burn around me...🀣 Cause l couldnt move cause it hurts!

Anyone else deal with extreme pain after Ocrevus? Anyone? Please tell me lm not starting to have an allergic reaction to it.. So... Anyone?

Hi Guys! πŸ€—πŸ’•πŸŒ 

Written by
Jesmcd2 profile image
Jesmcd2
CommunityAmbassador
To view profiles and participate in discussions please or .
Read more about...
27 Replies
β€’
Sandydemop profile image
Sandydemop

Hey Jes, sorry you are going through this. Hoping for better days ahead.

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toSandydemop

Hi Sandydemop TY! You n me both! πŸ€—πŸ’•πŸŒ 

erash profile image
erash

oh my! Definitely call ur Neuro.

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toerash

Even though its almost gone? I actully might be able to get a shower tomorrowπŸ™πŸ™‚ πŸ€—πŸ’•πŸŒ 

bxrmom profile image
bxrmom

Oh no Jesmcd2 Sounds like an allergic reaction. Call your neuro ASAP!

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply tobxrmom

I can walk, kinda, now... and move my head, and shoulders, n arms, without screaming in pain... 🀣 so lm getting betterπŸ™‚πŸ€—πŸ’•πŸŒ 

bxrmom profile image
bxrmomβ€’ in reply toJesmcd2

Glad you are getting better. Should at least let your Neuro and the staff that adminsters your next dose know. Hopefully next time will be better.

erash profile image
erash

glad it’s almost gone. I never experienced pain with my Ocrevus, tho I did have the infusion steroids.

Hi Jesmcd2 πŸ™‚Glad to hear you are doing better. But you still should talk to your neurologist before next infusion.

πŸ™β€Lisa πŸ’•

BTW funny cartoon 🀣

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toSweetheartonvdayl

Im going to email them write <~ πŸ™‚ now! Cause this just stinks! And it hurts!! N TY, l tried to scratch out the bad word, but like my life right now, its just not working so good! πŸ€—πŸ’•πŸŒ 

Sweetheartonvdayl profile image
Sweetheartonvdaylβ€’ in reply toJesmcd2

Sorry πŸ™ πŸ₯°πŸ˜‡β€πŸ’•

hairbrain4 profile image
hairbrain4

Glad you are getting better but it's not sounding very good. That's what was happening to me. I started feeling worse with every infusion. I posted earlier that with my last one I didn't do steroids & felt worse the next day & it kept getting worse. Called my neuro & she said we need to find another DMT. That's when I found Vumerity & I'm doing great on it. Ocrevus isn't for everyone, unfortunately.

carolek572 profile image
carolek572CommunityAmbassador

No extreme pain after O infusion for me, Jesmcd2 . Please let your neurologist know straight away. :-D

NorasMom profile image
NorasMom

Maybe because it was still classified as a new drug when I was on it, but I used to get a rep from Ocrevus who'd call me when my dose shipped to the neuro and then a follow-up call to see if I had any problems with it. I'm assuming they're not doing that anymore, but you might want to track down their headquarters and give them a call. The staff I spoke with were always very nice.

Tazmanian profile image
Tazmanian

I have never experienced this! Talk to your neurologist don't wait please

kdali profile image
kdali

I'm not sure which pain you mean. I had bone pain for a day or two afterwards, and horrible pain from spasticity for months, but it looks like you're getting over it a lot quicker than I did. If it is spasticity and you take something for it, you can ask your MD if your medication could be changed for the time when it's the worst. GL!

twooldcrows profile image
twooldcrows

oh my have you talked to the doctor ...have never had all of this pain you are talking about ...love the poster so cute and so true watch out for us for we are warriors....we will not be messed with ...you call the doctor okay ...loads of love ...

kwhompus profile image
kwhompus

I have never expierienced any pain whatsoever. Please call your doc and find out whats up.

stepsforNeeC profile image
stepsforNeeC

Awnnn, so sorry to hear that my friend. My infusions are Sedoul Medrol (think I spelled it right) they make you sick too, or at least me! Hang in there my,. friend. One day at a time! Blessings and Peace. NeeC

Morllyn profile image
Morllyn

So sorry Jes!😲 I hope you feel better really soon.❀️

leking1 profile image
leking1

Jes, I am so sorry you are going through this. I agree with all the other good advice you have gotten. Your Dr. must know about this, even though you are getting better. Please call or email him/her today. If you can email your Dr. directly, as I can, that would be better than a phone call and leaving a message for him. Feel better my friend/sister and do what we tell you to do! Linda

Elizt3 profile image
Elizt3

I hope you feel better soon. Sorry you’re going through this. I’ve been on Ocrevus since January 2019 and haven’t had this kind of experience. Keep us posted on what you find out and how you’re doing

Essaad profile image
Essaad

Sorry u ere going through. You need to call your Ms nurse. Hope you get better soon. Many other illnesses are worse than Ms. Be happy.

mrsmike9 profile image
mrsmike9

I don't take that but have not heard others respond to theirs like that. Call your neuro!!!

Neworleanslady profile image
Neworleanslady

i never have had that reaction! Im glad the pain is almost gone for you and you can function!

Cutefreckles72 profile image
Cutefreckles72

Sorry about your pain. I hope you feel better soon. πŸ™πŸ½

whwiechm profile image
whwiechm

How long have you been on Ocrevus? I have been on it for 2-1/2 years with no problems so far.

Not what you're looking for?

You may also like...

Its been awhile...

Im just gonna jump right in... Last yr, Jan my mother was dxd'd with Pemphagus. 1 ina million they...
Jesmcd2 profile image
CommunityAmbassadorβ€’

I really do want to know 7!

It is a crazy world! And as you can see, l have been left to my own devices... Sooooo .... Where...
Jesmcd2 profile image
CommunityAmbassadorβ€’

Baby picture!

I didnt say it was mine! πŸ€£πŸ˜‚πŸ€£ But lm told l was a cute baby, thats why she kept me! πŸ€£πŸ˜‚πŸ€£πŸ€—πŸ’•πŸŒ 
Jesmcd2 profile image
CommunityAmbassadorβ€’

L carnitine?

Is anyone taking L carnitine? I've been contemplating it for lean muscle mass loss associated with...
erash profile image
β€’

Sinus Infection, ugh

OK, lm apologising now cause this sinus infection l have, has just now kicked my butt.😠 So as hard...
Jesmcd2 profile image
CommunityAmbassadorβ€’

Moderation team

See all
johnMSAA profile image
johnMSAAPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.