Actemra Side Effects?: After 4.5 years of PMR I was... - PMRGCAuk

PMRGCAuk

21,317 members40,425 posts

Actemra Side Effects?

Mooreby profile image
11 Replies

After 4.5 years of PMR I was diagnosed with GCA September 2023. In late November my insurance approved me for receiving Actemra. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous. After eating toast in the morning to take my meds, I spent the rest of the day and night in bed. I have felt this way for the next 3 days, not being able to eat and nauseous at the thought or sight of food. I am feeling much better here on day 6 since my injection and able to eat a small portion of food without feeling ill and bloated.

I have spoken to both the pharmacy and my Rheumy about these symptoms and the plan is not to take my scheduled injection this week and try again the following week to see if this was due to Actemra or a virus.

Here's the question: Has anyone out there experienced these similar symptoms from this medication and is so, were you not able to take Actemra at all, or did your symptoms dissipate with continued use over time and were able to get the benefits of using it?

Written by
Mooreby profile image
Mooreby
To view profiles and participate in discussions please or .
Read more about...
11 Replies
PMRpro profile image
PMRproAmbassador

I can't say I have experienced ANY obvious adverse effects - maybe a slight lack of appetite but that may have been coincidence. Sorry ...

Grammy80 profile image
Grammy80

Hi, I'm not Dr. Grammy, but this is my guess. My guess is you may have had a virus and Actemra just gave it the green light.

I've had GCA for over four years and had weekly injections of Actemra just about the whole time (I'm in the States). I've had no side effects at all. Twice, I've been taken off it by my rheumatologist; once when I had cellulitis and this year with a bowel perforation. My rheumy always stops it for any infection and if I am taking antibiotics, I resume when I am done with the meds. Actemra can make you more likely to "get infections'' or make them worse. To me, the benefits of taking it won~!!

I'm so thankful for Actemra. When it was mentioned to me in 2019, there was some hesitation because I have diverticulitis. I'm so glad I took the leap of faith. Hopefully, it will do for you what it has done for me. I copied this link from the manufacturer's website, but it has lots of interesting info. actemra.com/gca.html

💞

scottygirl73 profile image
scottygirl73

Sorry to hear this,mabey was a virus hope next injection will go well.I never had anything like that taking injections,but now back on Monthly infusion as for me i feel that works better,Rheumy said a few people have olso found this.Good luck xxx

Mahnahvu profile image
Mahnahvu

I am frequently tired for a day or two after taking my injection, but nothing serious or any other ill feelings.

ncfaaeos profile image
ncfaaeos

Interesting....I am due to start this drug very shortly. I'll let you know how I fare. Am glad to note how pleased some of you others are with it.

Rugger profile image
Rugger

I was on TCZ for 2 years in 2020 & 2021 and I had no ill effects at all. I hope this might just be a coincidence for you and glad you are feeling better.

Let us know what happens when you have the next injection.

nallufl24 profile image
nallufl24

I’ve been on Actemra for 2 years with no side effects.

LemonZest11 profile image
LemonZest11

Hello Mooreby, I've been on Actemra for nearly 4 years with no ill effects, except neutropenia, which was managed by spreading my jabs to 3 weekly. It has been a game changer for me. I truly hope this nausea is a coincidence and that you find the benefit that so many of us have. Let us know.

Kingmax profile image
Kingmax in reply toLemonZest11

patty

LRevell profile image
LRevell

I’ve been on weekly injections for 8 months and haven’t had any significant symptoms other than some light headiness. Tolerating pretty well and no longer on Prednisone. Hopefully you have a bit of a virus it’s going around and you can continue Actemra.

Mooreby profile image
Mooreby

Thank you all for your responses and experiences. It gives me hope for getting the benefits of Actemra and it was just s coincidence with a virus that I was experience. I plan to have my second injection this Thursday after taking a week off. Thanks to all and wish me luck!

Not what you're looking for?

You may also like...

Actemra side effects

Not sure if I am suffering side effects from Actemra. The last few days I have been itchy all over...
shazstep profile image

Antibiotic and Actemra

Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm...
ILbbHpmr profile image

Actemra injection

Hi yet another question re actemra. Can I change time of day or day I do the weekly injection? I...
WaltzG profile image

Question? Methotrexate and Actemra

Love the information found here! Grateful to all of you🙏 Currently doctor has me on...

Prolia side effects

Hi Haven't posted in a while but been keeping up. Would like some feedback on my latest...
peanuckle profile image

Moderation team

SophieMB profile image
SophieMBPartner

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.