actemra Pmr/Gca

[Plains]

I had my first infusion of Actemra two weeks ago. About a half hour after leaving the center my lip became numb. I took a Benadryl just in case it was a reaction. It did go away. I have recently noticed I am not really hungry and have lost some weight. I also have this nervousness feeling (like my insides are jumping) that I never had before the infusion. I did read the side affects of the drugs.. just wondering if anyone else has experienced this. I am also tired most time and feel like I am in a fog. I am still taking 20 Mg of Prednisone. My doctor wants me to go down to 15 in two weeks. I was diagnosed with possible, now I think more confirmed GCA late July.

I am a little nervous to be getting my second infusion on November 9th.

Thank you and I hope everyone has a nice day. 🌻

[PMRpro Ambassador]

I assume you mean Actemra? Maybe you could correct the spelling - it does make a difference when people see a name they don't recognise.

There are a few on the forum who have been given the infusion - most of us on Actemra are on the weekly injections. They, of course, are much lower doses at a time, but I can't say I have had any similar effects. I assume you contacted the centre and reported the numb lip?

My rheumy was very keen I should wait at least a couple of months before trying to reduce the pred and to go very slowly - not a 25% drop after just a few weeks.

[Plains in reply to PMRpro]

thank you, I corrected it. Your info was helpful as well. The infusion is the only way I can get it covered due to the cost.

[PMRpro Ambassador in reply to Plains]

Yes, I know that is the case in the USA. I have to say - I wish I could lose weight on it!!!!

[Sharitone]

I have injections and not infusions, and I didn't have anything like he reaction you have had. However, I can just say that whilst I was swept with a weird wave of fatigue after the first one, the second time it was not so bad, and after that it never happened again. I'm always very tired, and a bit extra tired the following day though.

If you're worried about your reaction, you should probably ask your medics before the next infusion.

But if you go ahead, I hope it really works for you🙂.

[Plains in reply to Sharitone]

thank you

[Plains]

thank you so much for this information! Much appreciated

[Plains]

I forgot to ask you, are you still taking prednisone? If so how much?

[RivieraWelter]

Hi there! I am in California on monthly infusions as well. I have only had three infusions with no real reaction at all. However, at the infusion centre they were very clear that if I experienced any side effects during or after the infusion I should report them immediately. The infusions have made a real difference for me in a positive way - I hope you are able to continue if you can do it without bothersome side effects. Good luck to you!

[Plains in reply to RivieraWelter]

thank you