GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Thank you

Has any one tried actemra for pmr? What did you think about it and what was the cost?

Hi @bonnie123, Welcome to Connect. There are a couple of other discussions on Actemra you might find helpful:

--- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
--- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/.

Has your doctor or rheumatologist suggested treatment with Actemra (Tocilizumab)?

I also belong to a group in the UK and they are hard pressed to get Actemra for GCA. I don't think they can get it for PMR. I believe if their Dr. says they have RA, they can get it. I'm not sure about here in the States but this is a good place to find out.
I've been taking it since October 2019 and it finally enabled me to taper my prednisone, although my case was misdiagnosed for about nine months...so it got a running start. One month, 4 injections costs about $5000....don't faint! I only pay $45.00 for the first month of the year and then 'extra help' kicks in. I pay nothing after that. I think it falls under 'catastrophic illness'...though I don't feel catastrophic. I'm 82, and have Medicare Advantage through Blue Cross/Blue Shield.
I hope that at least helps.💞

I received Actemra for PMR 4 years ago.. Actemra was requested and approved. Actemra works very well for me. I have had minimal side effects and was able to taper off prednisone relatively quickly. My rheumatologist now thinks PMR might be in remission but I'm still taking Actemra.

I have other autoimmune disorders but not GCA. Actemra isn't FDA approved for any of my autoimmune disorders. My rheumatologist needed to get authorization first before he could prescribe Actemra to me to treat PMR. Some of the issues he addressed in the request for approval are as follows.

1) I was on prednisone for more than 12 years for the treatment of PMR which was diagnosed when I was 52 years old. I was unable to taper off prednisone.

2) Other medications such as methotrexate and leflunomide were tried and were either not effective or not tolerated.

3) PMR remained refractory on moderately high doses of prednisone.

My rheumatologist told me that I was "too young" (64 years old) to take prednisone for the rest of my life. I asked another rheumatologist what he thought about the odds of Actemra being approved. His reply was that it was "unlikely" and "don't count on it."

Actemra was approved based on my medical history. The recommendations from the doctors who approved Actemra were the following:

"Patient meets 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.

Request for Actemra (tocilizumb) is approved for use pending appropriate labs have been obtained and met. Dosage and administration of Tocilizumab should follow recommendations for treatment for GCA."

There is another biologic medication that works like Actemra. This other biologic is called Kevzara (sarilumab). It has recently been FDA approved for the treatment of PMR. It might be easier to get Kevzara prescribed for PMR.

I was diagnosed recently with GCA. My Rheumatologist started me on 60 mg of Prednisone tapering off to 20. I have had some side effect issues with Prednisone. She ordered the injection Actemra and just started my 1st injection today. Will wait and see how it responds. I've been having headaches and some vision changes but the vision could be due to cataracts. Has anyone had the biopsy performed for GCA. My doctor said it's not always accurate

Headaches and eye problems are part of GCA. Please find a vascular surgeon and discuss it with them. What is your SED rate?? Even on 40 mg of Prednisone both sides of my head were positive for GCA. Do not wait as your vision could be impacted.

@smudge621

I'm just thinking about all the headaches I had when trigeminal neuralgia was diagnosed.

When uveitis was causing eye inflammation along with visual disturbances with the potential for going blind — I don't know why GCA wasn't ever diagnosed. Fortunately, my ophthalmologist could tell it wasn't GCA by looking inside my eye and he could see my optic nerve. He would tell me often that he didn't see any signs of GCA.

Now I have glaucoma related to prednisone use. My optic nerve is showing some changes from ocular hypertension. I had cataract surgery 20 years ago related to prednisone use so no more worry about cataract formation.

PMR along with many eye problems but I have never been diagnosed with GCA.

You need to get things checked out by professionals with the diagnostic equipment and people who can order lab tests to know for sure what is happening.

A temporal artery biopsy is hit and miss for making an accurate diagnosis.

I'm glad you are starting Actemra and it takes a few weeks, maybe even more, before you will notice a difference. In these past three years as a GCAer I haven't heard a negative from any user I've talked with.

I presented with sight loss in one eye, and they did do a temporal artery biopsy. There was no doubt about the diagnosis and the narrowing of the arteries. Since I was given general anesthesia, it was painless, and the healing was quick with no issues. It is a tiny incision. I've heard of some places 'scanning the artery,' but I'm not sure how that works. It seems the veracity of the outcome is an issue of debate with each side...positive their way is best.
The minor surgery was done by a vascular surgeon because I entered the ER with vision damage. I never went to a rheumatologist prior to that time, but for nine months, doctors (mine, ER, and Urgent Care) kept telling me I had the flu.
I wish you the best and am grateful you have a rheumatologist treating you. There is hope indeed and it sounds like you are on the right track.💞

Yes I have had the biopsy
You are correct .. mine said
GCA healed !! Whatever that means
I was on 40 mg of prednisone for 3 days prior .. so I think that’s what they meant ! But they said I have it ! I am currently on 30 mg tapering 5mg every 3 weeks. So far, so good !🙏
I too had side effects of prednisone and was in the hospital two times before we got it a little regulated.
Good luck to you
Please let us know how you do with a acterma. That could be my route as well !