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

You are so fortunate. I went on Actemra and the drug side effects were so severe for me that I had to get off. Also tried Methotrexate- no go. And here I worried about giving myself the injection( piece of cake) and never the drug side effects!

Luckily I haven’t had any side effects except perhaps worse fatigue. Methotrexate made me throw up. At least Actemra has taken care of my PMR pain. I hope you can find something that helps. I know how frustrating it is.

I was diagnosed with PMR May 2016. I didn't want to use corticosteroids, so after I did some research, I wanted to take Actemra. It's hard to find a physician that'll prescribe Actemra, but the sponsor in both the Phase I & Phase II trials is Dr. Robert Spiera, an HSS rheumatologist in NYC. I went to him & he (after some discussion) agreed to start me on Actemra, using injectables for a duration of (3) months. It was the same dose used in both the Phase I & Phase II trials, though in these trials, Actemra IV infusions were used. I have nothing but good things to say about Actemra, though you have to find a physician that knows the pitfalls of taking the drug. Pre-treatment lab tests have to be done to exclude your having an infection before you start taking Actemra and scheduled lab work during the period you're on Actemra is required. You have to find a physician that knows what he's doing & has experience with the drug. I had no issues with Actemra & the PMR was gone before the (3) month period had elapsed. Actemra, though, is not a benign drug. Actemra is expensive & insurance doesn't cover much of the cost. I paid cash for the drug. Prior authorization covers some of the cost, but not much - only about $400.00. Virginia Labbadia

Has anyone in the US been prescribed Actemra just for PMR with no diagnosis of GCA? If so, how did you get it approved by your insurance?

I've had PMR for 3 1/2 years and I am unable to get under 10 mg of prednisone daily. I am currently back up to 15 mg. I have already tried Methotrexate with some success in reducing the prednisone but was unable to continue taking because of the side effects.

Trying to figure out how to get my insurance to approve Actemra. Thanks for any help.

Hello @pmrhater, Welcome to Connect. I've never taken Actemra for PMR but earlier in this discussion @cadi posted about Actemra and may have some suggestions. Also, the manufacturer's website has some financial assistance information that may help you work with your insurance company even though it mentions it's for rheumatoid arthritis (RA).

-- Financial Support for RA Patients | ACTEMRA® (tocilizumab):
https://www.actemra.com/ra/tools/financial-assistance.html

Have you talked with your insurance company?

Hi John,

I just received word yesterday from my doctor's office that my insurance company had denied the Actemra due to the "diagnosis". I'm sure they are looking for GCA and/or RA. My doctor doesn't seem interested in appealing and said he hasn't had any luck getting anyone approved for Actemra. I plan to see if I can appeal myself. He wants me to try Leflunomide but I'm not sure whether I want to try it or not. Honestly, I'm really not sure I want to try the Actemra either but I'm getting nowhere fast here. I'm back where I was 2+ years ago.

I have subtle GCA symptoms (my opinion), itchy, tingling scalp and some tenderness. Also since I am in a "flare" right now, I have some jaw pain which eases up a few hours after I take the prednisone. I feel like I might have GCA and/or vasculitis but the doc said that even with angio studies that it would be unlikely to show anything since I've been on prednisone for 3 1/2 years.

I have "a new to me" rheumatologist, who didn't like the fact that I have been splitting my prednisone into two equal doses, morning and evening (per my previous rheum advice) so he changed me all at once in the morning.....10 days ago. I am now in a flare and am back up to 15 mg daily (I was at 9 mg when he had me change). After 3 days of agony for 10 hours each day, I called and said, I couldn't take it all at once. So, for a week now, I have been taking 10 mg in the morning and 5 mg at 2pm, like he then suggested. However, I'm still having quite a bit of pain/stiffness from the minute I open my eyes until 2-4pm. So today I took 10 mg this morning and will take 5 mg this evening. If I'm sore in the morning, I'm splitting it evenly again. It's what works for me. He also told me that I have steroid resistant PMR.....is that really a thing?

Thanks for the info and reply!

One of the symptoms my doctors were always asking me about for GCA was a sensitive or tingling scalp. Can you discuss the symptoms with your rheumatologist and possibly have him reconsider that it could possibly be GCA?

Here's some information that might be helpful to explain what might be happening.
-- Glucocorticoid-resistant polymyalgia rheumatica: pretreatment characteristics and tocilizumab therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844628/

I had my first visit with him about 8 weeks ago. I gave him a very detailed typed up account of my last 3 1/2-year history with PMR, including my concern about scalp issues when under 9 or 10 mg (I was at 8 at that time). I then had a follow up visit 10 days ago when I was at 9mg and I told him then that I thought the itching, tingling and tenderness was getting worse. He pressed my temples and asked if I had any pain, which I didn't. He acknowledged what I said about the tingling etc. but then when he was entering in my new prescription for the increased dosage of prednisone (9mg), he questioned why I wanted all 1 mg pills. I told him I split the dose and he was not happy about that at all (it was on my detailed list from the first visit). That became the main topic of conversation and that is when I was instructed to take the prednisone all at one time, once a day. Two days later, I contacted him to let him know how much pain I was in and he then told me to go up to 15 mg (10mg am and 5mg at 2pm) for one day and go back to 9 mg. I was so sore the next few days (weekend) that I stayed at 15 mg and contacted him again on Monday. He said to stay at 10 and 5 for a week.

When I got the notice about the denial for Actemra, I messaged him about the possibility of an appeal and also to update him on the continued pain and my increased concern about GCA as the jaw pain was new. He said, my only options now were prednisone and Leflunomide and he made no comment on my concern about GCA. I responded that I wanted to appeal the Actemra decision and again expressed my concern about GCA. That was Friday, early afternoon but I have no response yet. I hope to hear something on Monday.

It doesn't help that my last CRP was 1.1 and SED was 13 and my WBC was 11.1. I was on 9 mg then. It seems like those numbers have to be high to get anyone's attention.

I have been wanting to go to Mayo's for over a year now but they don't accept my Medicare Advantage Plan.

I am very frustrated!

My rheumatologist took care of approval for me on Medicare. Not sure how she accomplished it, but very grateful!

An update.

I finally managed to talk my doctor into filing an appeal against the denial of Actemra and I just found out yesterday that the appeal was approved! Woohoo! The medication is supposed to be here on Friday.

My lesson learned here is that you need to be your own advocate. My doctor was fine with accepting the denial of Actemra and did not see the purpose of an appeal. However, I insisted that we try and offered to talk with whoever I needed to in his office to get the ball rolling. I think he finally agreed just to get me out of his hair.

I pray I get good results and I can finally get off or at least lower my prednisone. Success!