PMR flare on Actemra?

[Spanky2019]

Dx with gca may 2019, lots of other health issues,i.e. osteoporosis, esophageal issues, cervical/lumbar issues. Had a lot of issues with difficulty walking, weakness in legs & back maybe R/T high prednisone. Had pain a few times in my hips & thighs but not like this. I went from 6 1/2 mg pred to 6 mg prednisone 10/31. Had some mild shoulder & hip achiness for awhile before changing dose but thought it was related to cervical stenosis c5c6 ++. However, woke during night of 11/5 with severe burning pain in both arms, both shoulders, hips and the back of my legs (back upper thighs kind on rear end too). I'm taking 6 mg pred and have been on actemra 10 months. Can this be PMR? I thought the actemra would keep that from happening. Rheumatologist is out until next week. PCP said to increase prednisone to 7 mg. I am in terrible pain & so disappointed b/c I acquiesced to taking actemra inspite of risks because I thought it was working for people. I have opioid pain rx for back but I want to keep using it sparingly, and it really doesn't help this pain. What would you do?

[SheffieldJane]

Oh Spanky poor you! I am on Actemra ( 4 months) and 8 mgs of Pred. From 40 mgs, Like you, I am taking Actemra to be done with Pred sooner ( GCA diagnosed a few months ago after 4.5 years of PMR. I would be inclined to increase my Pred dose, confronted by so much pain. To be honest, I have not been given advice as to what to do if I seemed to be flaring. Although I don’t feel at all well and the fatigue is extreme, I have not experienced any PMR or GCA pain. I am very concerned about side effects and often read about them if I experience anything new. I would want to ensure that an attack of such severity was nothing to do with the medication I was on. I hope you can talk to a consultant very soon. Let us know how this goes!

[jinasc]

"I thought the actemra would keep that from happening"

The answer is that Actemra is a steroid sparing agent, not a cure. The underlying illness will always decide when it goes a way and when it comes back or causes problems until we have an actual cure. So some individuals benefit and others not. It would do no harm to take the 7mg till your Rheumy comes back as it is just for a week. However, ensure that they know you want to speak to s/he as a matter of some urgency.

[PMRpro Ambassador]

I can only repeat: Actemra/tocilizumab works to disable one cause of PMR/GCA, the IL-6 cytokine pathway. There are known to be 3 such mechanisms involved in GCA and it is perfectly possible that the same mechanisms apply in some cases of PMR. If the patient has GCA/PMR due to another mechanism besides the IL-6 one, then the Actemra will not stop it, biologic drugs are very specific and do not work on other things.

In the GCA trials, about 50% of patients on Actemra were able to discontinue pred altogether while the others were usually able to reduce their pred considerably but not get to zero. For them, Actemra is a steroid sparer but not able to disrupt the underlying cause of the inflammation.

What would I do? Take the pred I need if it works to stop the pain.

[misha453]

I have both GCA and PMR. I had been on Actemra for 11 months when I had a PMR flare when I tried to reduce my Prednisone from 2 to 1.5 mg. I had to increase my Pred to 5 mg for a week, then 4, 3,2 each for a week to stop the flare. The pain from a PMR flare is excruciating but it should respond to an increased dose of Pred. Actemra has controlled my GCA symptoms and it did help my PMR symptoms initially but on its own it isn't enough for me, sadly.

[Dydee]

I only have PMR, lucky me! I have been creeping slowly down from 15mg Pred. (10mg wasn't enough in early stage back in June 2020) My doc wanted me to start tapering back in Sept. so have gone from 15mg to 11mg currently, going down 1mg every 2 weeks .I am so afraid of a flare but if I do, I plan to increase until I am more comfortable and stay there for a month then start tapering again. You need to take extra Pred until you have the pain under control. Yes, Pred CAN have side effects but not everyone gets them and usually only after a long period on it at higher doses. Untreated PMR inflammation probably has side effects too.