← Return to PMR - How will I know I am in remission?

loresathome (@loresathome)

PMR - How will I know I am in remission?

Polymyalgia Rheumatica (PMR) | Last Active: May 12 6:56pm | Replies (43)

Comment receiving replies

I have an upcoming rheumatology visit. I need to decide where I want to go from here.

I don't have much to complain about in terms of PMR symptoms while taking weekly Actemra injections. I was allowed to try monthly infusions which might work better than Actemra injections.

MAYBE, I don't need Actemra anymore but my rheumatologist will probably insist that I need something. How does one know when remission has been achieved? The only definition of remission of PMR that I have heard is when PMR "burns itself out" and you don't need prednisone anymore.

I have been off prednisone for 3 years. My rheumatologist has insised that I'm "better off" on Actemra and I should stay away from prednisone. No argument from me and I agree wholeheartedly.

My dilemma is that I don't want to take Actemra forever either. I don't seem to have any side effects from Actemra. I still have residual side effects from long term prednisone use for more than 12 years. I have no desire to go back on prednisone again.

I liked monthly Actemra infusions better than weekly Actemra injections. There was something about an infusion every month that made me feel like there was nothing wrong for an entire month. I probably could increase the time between injections but my rheumatologist doesn't want me to go any longer than 10 days.

There are some other things to consider. My ophthalmologist would rather I take Humira (TNF inhibitor) for recurring uveitis. My ophthalmologist thinks Actemra isn't optimal treatment for uveitis but Actemra "seems to be working" for the time being. My rheumatologist just says it would be impossible to adequately treat multiple autoimmune problems.

I have no idea where to go from here. I'm tempted to say I want to try going without any medications just to see what happens. Anyone have any suggestions?

Jump to this post

Replies to "I have an upcoming rheumatology visit. I need to decide where I want to go from..."

At this point, I can see why you don’t stop the Actemra. I have gone back-and-forth with prednisone and Actemra , but never completely left prednisone. I am also talking 12 years, but most of that was with the GCA. I would definitely try getting off Actemra. You can always go back on and I prefer the shots because you can spend them out and use this medicine and taper that way.

Hi @dadcue, That's a great question. My own personal opinion is you will know you are in remission when you have minimum to no pain when you wake up in the morning besides the normal aches and pains of old age (that's me!) and you are no longer taking medications for treating PMR. You will notice that we have moved your post to an existing discussion where others are asking the same question here:
— PMR – How will I know I am in remission?: https://connect.mayoclinic.org/discussion/pmr-8/.

You might want to run your question by your rheumatologist but it is a great question to ask.