Actemra

Posted by redrock @redrock, Nov 21, 2023

New to group,
Wondering if anyone in the group has experience with Actemra infusion.
I am 50 yrs with this miserable illness, have been on mostly everything and seems there’s no stopping the progression. I have booked a trip to Costa Rica in February for 11 days and my Rheumatologist says this works faster to give me a comfortable vacation. I refuse to give in just celebrated age 79. Thanks for any input. Kay (redrock)
Deformity hands & feet
Nodules hands
Functioning though difficult

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I've been using Actemra for quite a while. I had the infusions b4 covid started but it became unavailable during the worst of covid. Now I have the injections. They worked well at first, but I may have to go back to infusions as they may be better.

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@redrock Welcome to Mayo Clinic Connect. I personally don’t have experience with actemera, but i know that many members of the group do. I’m sure that after the holiday weekend is over, there will be responses.
https://connect.mayoclinic.org/interaction/discussion/29287/bookmark/. Here is one discussion on actemera where you can directly ask your questions.
Is your main concern with the infusion?

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I have PMR and GCA diagnosed Jan. 2023. Having been on high doses of prednisone since then I have been able to taper my prednisone to 9mg daily due to Actemra injections. I am experiencing very slight PMR stiffness after taking Actemra for 3 months but have no headaches (GCA). I will let you know how my symptoms progress. Like you this isn't like me (I am 68) I had to stop my tennis, golf etc. and can only exercise gently. I am hoping my PMR eventually goes into remission.

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@jjwwoo33

I have PMR and GCA diagnosed Jan. 2023. Having been on high doses of prednisone since then I have been able to taper my prednisone to 9mg daily due to Actemra injections. I am experiencing very slight PMR stiffness after taking Actemra for 3 months but have no headaches (GCA). I will let you know how my symptoms progress. Like you this isn't like me (I am 68) I had to stop my tennis, golf etc. and can only exercise gently. I am hoping my PMR eventually goes into remission.

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@jjwwoo33 Welcome to Mayo Clinic Connect! Thank you for your response to @redrock ! I certainly hope to see you continue in this and other discussions.

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@becsbuddy

@redrock Welcome to Mayo Clinic Connect. I personally don’t have experience with actemera, but i know that many members of the group do. I’m sure that after the holiday weekend is over, there will be responses.
https://connect.mayoclinic.org/interaction/discussion/29287/bookmark/. Here is one discussion on actemera where you can directly ask your questions.
Is your main concern with the infusion?

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I met with my Rheumatologist ti discuss treatment for my recently diagnosed GCA.
She feels Actemra is the way to
Go!!!
When I read sbout all the serious dide effects it dcares me .
I am trying yo buy time before I make the call !!!
Has anyone used Prednisone to take them to remission ???
Please all suggestions will be helpful !!!!
Thsnk you !
Marie M

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@marieameehan

I met with my Rheumatologist ti discuss treatment for my recently diagnosed GCA.
She feels Actemra is the way to
Go!!!
When I read sbout all the serious dide effects it dcares me .
I am trying yo buy time before I make the call !!!
Has anyone used Prednisone to take them to remission ???
Please all suggestions will be helpful !!!!
Thsnk you !
Marie M

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@marieameehan Talk with your doctor about the side effects! When I asked my endocrinologist about a serious side effect to an osteoporosis drug, her response was, “you’re more likely to be hit by lightning than get the side effect!” So I’ve been taking the drug with no problems.
As for the prednisone, you don’t want to take it until you are in remission, believe me. I’ve been on it for 6 years and am now trying to get off. When you get to remission, what will help you stay there? I’m able to get off prednisone because my 2nd drug, Mycophenylate, will keep me in remission.
Think you could ask your doctor about the side effects of Actemera and the possibility of just using prednisone. Can you send a message through the portal this week?

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Welcome to the group!
I have been on Actemra infusions for a little over a year. My RA is in excellent control. My rheumatologist is considering reducing my infusions. After having a reaction to Plaquenil, this is what my rheumatologist prescribed. I haven't noticed any reactions to this medication.
Good luck with the Actemra.

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@darby413

Welcome to the group!
I have been on Actemra infusions for a little over a year. My RA is in excellent control. My rheumatologist is considering reducing my infusions. After having a reaction to Plaquenil, this is what my rheumatologist prescribed. I haven't noticed any reactions to this medication.
Good luck with the Actemra.

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Thank you very helpful!

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I'm currently doing Actemra infusions primarily for PMR. I started with Actemra injections and progressed to doing monthly infusions because the infusions work better for me.

I agree with @becsbuddy. I took prednisone for 12 years waiting for PMR to "burn itself out" and go into remission.

PMR never did go into remission. My rheumatologist said Actemra was my best chance of ever getting off prednisone. I was able to taper off prednisone and Actemra is keeping me off prednisone.

It wasn't just PMR because I have multiple autoimmune conditions, They all are currently in remission.

I would not assume that you will have side effects from Actemra. When I was seeking information about Actemra for PMR, I got negative feedback about the risk of Actemra side effects on top of the "manageable side effects" from prednisone. I also read that prednisone was the "only option" for PMR.

I was able to get off prednisone with help from Actemra. My prednisone side effects are improving or have gone away entirely. I was able to discontinue other medications that were being used to treat prednisone side effects.

I don't seem to have any side effects from Actemra.

You will never know if Actemra works or not unless you try it. If Actemra doesn't work, it can be stopped easily ...unlike prednisone which has to be tapered off slowly. Actemra can be stopped easily if it doesn't work or you have side effects.

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@dadcue

I'm currently doing Actemra infusions primarily for PMR. I started with Actemra injections and progressed to doing monthly infusions because the infusions work better for me.

I agree with @becsbuddy. I took prednisone for 12 years waiting for PMR to "burn itself out" and go into remission.

PMR never did go into remission. My rheumatologist said Actemra was my best chance of ever getting off prednisone. I was able to taper off prednisone and Actemra is keeping me off prednisone.

It wasn't just PMR because I have multiple autoimmune conditions, They all are currently in remission.

I would not assume that you will have side effects from Actemra. When I was seeking information about Actemra for PMR, I got negative feedback about the risk of Actemra side effects on top of the "manageable side effects" from prednisone. I also read that prednisone was the "only option" for PMR.

I was able to get off prednisone with help from Actemra. My prednisone side effects are improving or have gone away entirely. I was able to discontinue other medications that were being used to treat prednisone side effects.

I don't seem to have any side effects from Actemra.

You will never know if Actemra works or not unless you try it. If Actemra doesn't work, it can be stopped easily ...unlike prednisone which has to be tapered off slowly. Actemra can be stopped easily if it doesn't work or you have side effects.

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thank you for your insight...

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