Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

Posted by DadCue @dadcue, Dec 29, 2020

I was diagnosed with PMR in 2007 which was in addition to reactive arthritis with recurring uveitis which was diagnosed in the early 1990's. I have taken prednisone daily since PMR was diagnosed. My average prednisone dose over the years was probably 25 mg daily and never less than 10 mg without having a severe flare. I have tried several DMARDs as steroid sparing agents but none of them worked well. I had given up hope that I would ever taper off prednisone.

Twelve years of prednisone has taken a toll and my rheumatologist would say my medical history is "complicated". With that in mind, my rheumatologist asked if I would be willing to try Actemra (Tocilizumab) which I started January 1st, 2019. The past two years have been even more complicated but I was prednisone free for most of 2020.

I would say PMR is in remission however I do have arthritic pain which I guess is due to reactive arthritis and aging. I also experienced a flare of uveitis which had been dormant during my PMR years when I was taking prednisone daily. My ophthalmologist prescribed Humira because she thought it would be a better biologic for uveitis. Actemra worked better for for the chronic pain I associate with PMR so I opted to go back on Actemra.

Has anyone else tried Actemra for PMR? It is only FDA approved for GCA.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

pattio172 | @pattio172 | May 19 12:02pm

Got PMR 6 years ago. Remission for 2 years and then it came back with a vengeance rearing its ugly head. April 9, after temporal lobe biopsy, and almost losing eyesight, was diagnosed with GCA.

lashley75 | @lashley75 | May 20 9:17am

I did some research currently looking for that “miracle” for the pain I am dealing with having PMR; I was on prednisone for a little over 5 mos.

It weaken my bones, made me dizzy, gained 15 pds, so depressed too. Took myself off by tapering down for nearly two mos.

I tried CBD oil, which at first I thought how wonderful. But, just two weeks into it … it seemed to stop working.

Did more research and found HA, bought a bottle and I am now taking it to see if it will work. Only been 1.5 wks, so giving it time. One pill twice a day.

I also take two 500mg of Tylenol in the morning due to extreme stiffness n pain. 1 more 500mg Tylenol around 4 pm; one more 500mg Tylenol around eight pm with the second pill of HA.

Not pain feee by any means yet, but doable ( hopefully will get better results with a little more time) or till I can find something that doesn’t destroy my liver, bones, eyesight etc, etc. I am aware of side effects from Tylenol. But that is temporary hopefully.

I did something a little different this morning….just took the HA pill to make sure it’s helping without taking the two Tylenol. Fingers crossed.

57rlallen | @57rlallen | May 21 8:49am

I’ve been on it for 8 months now. I’m not sure if it’s really helping or not. Also on prednisone but they are weaning me down now. The side effects are terrible but pcp thinks it’s the prednisone not the acterma!! I’m about to give up on all of it…

John, Volunteer Mentor | @johnbishop | May 21 9:17am

In reply to @57rlallen "I’ve been on it for 8 months now. I’m not sure if it’s really helping or..." + (show)

Welcome @57rlallen, Sorry to hear the Actemra along with the prednisone doesn't seem to be helping. You mentioned the side effects are terrible but your PCP thinks it's the prednisone and not the Actemra. Do you mind sharing more about what side effects you are having? Have you seen a rheumatologist?

nancy334 | @nancy334 | May 21 10:39am

In reply to @lashley75 "I did some research currently looking for that “miracle” for the pain I am dealing with..." + (show)

What is HA pill?

trina24 | @trina24 | May 21 1:46pm

Yes I have been on Actemra for 3 months.
Infusion. It has helped.
Trina

valerie6062 | @valerie6062 | May 21 8:50pm

I was diagnosed with PMR late 2015 with prednisone the drug of "choice" . After about 2 years I was weaned off and seemed to be in remission. Almost forgot that I had ever had it. Then in 2022 after a really stressful time in my life , I was diagnosed with GCA, hospitalised in order to have high dose infusion , 100mg for 3 days because my eyesight was deemed to be in serious danger.
Since then I have had several flares with yo yoing doses. Now I am on 6mg prednisolone daily and 10mg Actemra [once per week]. My blood tests are in normal range except now I am diabetic.
Actemra seems not to have given me any side effects and my rheumatologist wants me to stay on it for 6 more months plus the prednisolone staying on 5 mg. We are all so individual . For our doctors each one of us is a challenge.