How hard is it to get on Actemra (Tocilizumab) with PMR?

Technical problem ... lost part of this post. I will try again tomorrow.

Some people get Actemra (tocilizumab) approved for PMR but I don't think Actemra is approved if PMR is the only indication. I suspect people have "presumptive" GCA in addition to PMR. Otherwise, people have RA in addition to PMR and Actemra gets approved for RA.

I was prescribed Actemra for PMR but I needed a "prior authorization request." My medical record was reviewed with regard to this prior authorization drug request. I didn't think Actemra would be approved. At the time, I didn't care if it was approved or not. I didn't know why my doctor wanted to try Actemra. I didn't even know what Actemra was.

I had just transferred my care to the VA after I retired. It was my first rheumatology visit at the VA. My long time rheumatologist at the University Hospital said she wanted to enroll me into a study but I had too many other medical problems so I was excluded.

After Actemra was approved, my rheumatologist at the VA wanted me to do injections every 2 weeks to "play it safe." He also cited Part 1 of the Giacta Study.

The following is a summary of my approval:

Medical history relevant to this request:
Mr. _____ is a 64 year-old gentleman with history of PMR, Reactive arthritis, OA, PE on Warfarin, Trigeminal Neuralgia and recurrent Uveitis. Tocilizumab now being considered for treatment of Polymyalgia Rheumatica.

Past medical treatment for PMR includes the following;
1. For the last 10 years he has been on prednisone, between 10 and 40 mg at a time.
2. He was tried on Sulfasalazine and methotrexate as steroid sparing agents but did not tolerate these due to GI effect.
3. He was on leflunomide but stopped this after developing an abscess and does not want to go back on it. He was last on leflunomide in 2015.

Mr. _____does meet the inclusion criteria for tocilizumab in Giant Cell Arteritis (GCA), most notably the inability to taper steroids.

As per phone conversation with Dr ____, it is believed that PMR is mediated by IL-6 mimicking GCA. PMR therefore would seem most likely to respond to IL-6 blockade with Tocilizumab.

Approved for use pending appropriate labs. Administration should follow recommendations for treatment for GCA.

The request is approved:
- A documented therapeutic failure of the preferred formulary alternative(s) exists.

I was dx with PMR and GCA,. Then had biopsies test for GCA and didn't have it. Was taking 60mg of prednisone and started taking Actemra when I was feeling better. Weekly injections. Two years later and now tapering back on Actemra. They have a co-pay program to help $. My insurance is Medicare and Blue cross.

I was on Actemra for several months a couple of years ago. My doctor’s office had to do quite a bit of work to get the insurance company to ok it. I had the injections monthly and everything was going great until it wasn’t. I had tapered off the prednisone and I was only on the Actemra when I got diverticulitis. The doctor took me off the Actemra, and for three months I was on no medication. Then I got GCA which started the prednisone journey all over again! I then wen on Xeljanz which was working and I, once again, went off prednisone for eight months until I had GCA again. Now back on 60 milligrams and waiting for the next medication to replace the prednisone.

Wow, thanks everyone for sharing these experiences.

Overall, it sounds like people are getting doctors to prescribe, and insurance to cover, Actemra when they "only" have PMR. Although there may be some hoops to go through.

Hopefully, my rheumatologist will support Actemra, even if I only have PMR. He originally brought the idea up of using Actemra, when he suggested I may have a non-cranial version of Giant Cell Arteritis, in addition to PMR.

I'm having a full body PET scan tomorrow (Wed 3/22/23) that will hopefully clarify things. Except that the 60 mg of prednisone I'm on may hide a lot of inflammation and make whatever is there hard to detect.

My concerns is that Kaiser Permanente administration may have other ideas about giving me Actemra since it is so expensive, and they may worry about liability. Especially if the PET scan only shows PMR and not GCA.

I'll try to report back on these events.

I'm wondering why Xeljanz was tried? My rheumatologist at the University Hospital recommended Xeljanz as an alternative to Actemra when it was in short supply due to Covid. She said the following:

"One thought: Actemra works for one thing.... Humira for the other... ask them about a trial of Xeljanz (which also isn't FDA approved for either uveitis or PMR, but might work, and you would only be able to get it through the VA)."

I can safely say Humira didn't work for me.

Xeljanz was tried before FDA because of the failure of the Actemra. Now, I have a Xeljanz failure.

I have read several articles online stating that a biosimilar ( like a generic) of Actemra has been approved by the FDA in late 2022. It may be available in late 2023 or 2024. That is encouraging to me. In the future if I need to get off prednisone the biosimilar Actemra might be cheap enough to afford out of pocket if insurance will not pay and my doctor writes a prescription. Kevzara has been approved for PMR, so just more options.

Here is a list of medications that are in various phases of development.
https://www.gabionline.net/biosimilars/general/Biosimilars-of-tocilizumab
It seems the pharmaceutical companies have noticed that Actemra was being used for the treatment of severe cases of Covid.

Actemra has been around for a relatively long time. As success of IL-6 blockade for other inflammatory diseases is seen, I think the cost of Actemra will go down.

Kevara being approved for PMR was a huge development for PMR sufferers.

My doctor is not completely convinced that besides PMR I may also have seronegative RA. All my RA tests have always been negative.
Using that as a possible secondary diagnosis to PMR she was able to get Medicare and my supplemental insurance to pay for Actemra.
The paperwork I get from the insurances shows it costs around $6000 per month for the drug and its administration. Ridiculous!!!!