Actemra users

[Petcut]

Hi all I have Polymyalgia and gca,I’m on 9mg pred.and just had my 4th Actemra inj. today, and will go down to 8mg pred tomorrow as instructed by my Rheumatologist,what I’m asking is it the norm to be feeling exhausted,shakey,mild headache, drugged up, I’m putting this down to the Actemra (could be wrong ) I’ve felt like this for a few days now.

[LemonZest11]

Hi Petcut, I have been on Actemra for 20 months now and that has not been my experience at all. I began with weekly jabs, then 2 weekly and I have been on 3 weekly jabs for some time now, with none of the effects you describe. I would discuss with your prescribing doctor.

[Petcut in reply to LemonZest11]

Thank you so much for your reply,I will be contacting my doctor today.

[Suzita76]

Hello, I certainly have had no symptoms at all on Actemra.

[Petcut in reply to Suzita76]

Thanks for your info.I’m going to contact my Doctor today.

[SnazzyD]

I have no experience of Actemra but others have replied . However, your body may still notice a powerful drug being withdrawn to which it has become accustomed. Also, 8mg is nudging the level where it isn’t quite enough to cover all your daily needs for steroid, especially if you don’t absorb all of your Pred. If your adrenal glands are still suppressed, which is very likely at this level, you’ll feel it. I had to drop by 0.5mg at a minimum of every month to be able to function. Actemra doesn’t help with this process of getting the adrenal glands back to functioning. It is worth looking at the sections on adrenal glands in the FAQ’s.

[Petcut in reply to SnazzyD]

Thanks for reply,

[Petcut]

Thanks for your info.did you have your injection weekly?

[Sharitone]

I have only had two weekly injections. The first made me dizzy and wiped put after about 45 minutes and last ed 24 hours. The second did the same to a lesser extent. The rheumy nurse told me this was not unexpected, but I don't think yours sounds quite the same, so calling the doctor would be a good idea.

[Petcut in reply to Sharitone]

Thanks for info. I’m trying to get the help line nurse.

[baxternoni]

I have multiple health issues. I have been on Actemra for two years come January. I had many issues when I was on prednisone for 14 months. As far as Actemra I have hand tremors and some balance issues. I also had these problems when I was on Humira for 9 years. I was off Humira since 2012 went I had heart surgery and was in remission from my AS. I got diagnosed with GCA in November 2019. I recently got diagnosed with vasculitis and was told that I would be on Actemra indefinitely. Just to warn you, I was getting 4 injections a month and I had a lowering of my WBC. I was reduced two 2 injections and my WBC rebounded. Best of luck . 🙏🏼

[Petcut in reply to baxternoni]

Thanks for that info. I did get to talk to the help line nurse yesterday and she has told me to stop the Actemra for two weeks and go down to 8mg pred. and she will get back to me after Xmas to see how things are going.