← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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@emo

@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through this too. This is really helpful information to hear. I didn’t even know there were potential alternatives to prednisone (off-label or not). He is on Medicare, so you’re right and it’s possible an alternative may be difficult to obtain or get coverage for. I’m no stranger to using biologics off-label. I take Humira and it’s constantly causing confusion because I have a different diagnosis that’s not super uncommon but apparently not well known (I have seronegative spondyloarthropathy, which is related to the more common ankylosing spondylitis, but it only affects every other joint except the spine >_< and does not cause elevated inflammatory markers, making it difficult to diagnose). Thanks again.

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Replies to "@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through..."

I have seronegative spondyloarthropathy diagnosed as reactive arthritis. I was HLA-B27+ along with uveitis and excruciating lower back pain. It was preceded by nausea vomiting and diarrhea so probably an enteric infection. Fortunately, everything responded quickly to prednisone.

After the first incident, I was good for a couple of years until I relapsed. After the first relapse, I just needed 60 mg of prednisone followed by a fast taper every year or so.

After PMR was diagnosed, I started with 40 mg daily. I was still taking 30 mg after 5 years and I never could get below 10 mg for about 12 years. That was when Actemra was tried.

My ophthalmologist and I had a well established routine. I didn't really need any followup appointments. I just reported uveitis and they asked me how soon I could come in to be seen.

A uveitis specialist would rather that I be on Humira because it is "optimal" for uveitis. Humira night work well for uveitis but I still needed prednisone to control my pain. I chose Actemra to control my pain. I wanted to be completely off prednisone and Actemra allowed me to do that.

I told my ophthalmologist if uveitis recurs again, I would take the 60 mg of prednisone and taper off quickly again. That happened once while I was on Actemra and off prednisone. Actemra was stopped and Humira was tried. I have some experience with Humira but I can't say it worked very well for PMR

My rheumatologist says I have no evidence of ankylosing spondylitis (AS) and reassured me that she would be able to see the evidence of AS after all these years if I did. I do have severe spinal stenosis and extensive "degenerative changes" to my lumbar spine. I personally think it was caused by chronic inflammation in that area of my spine. I felt the pain each and every time a relapse happened. However, my treatment with prednisone was only for uveitis and not for reactive arthritis. Reactive arthritis isn't treated with prednisone for various reasons.

I'm on Medicare but I now receive my medical care from the VA. Actemra was authorized when my rheumatolgist requested it. Surprisingly, Actemra was approved for PMR and the recommendation was to treat my PMR as if it was GCA.

It might be easier to get Kevzara approved for your father's PMR. Medicare should cover Kevzara since it is now FDA approved for PMR. Medicare will only pay 80% of the cost of doing infusions of Kevzara but probably won't cover the cost of doing the injections. The cost will still be significant unless you father has a Medicare supplement that will cover the remaining 20%.

Hi Emo, I just thought I'd let you know that I have Medicare and BC/BS and, for three years, have had no problem or interruption in getting my Actemra. I had a different insurer and it used to come from CVS Specialty Pharmacy in a cooler, four boxed Acupens at a time. Now that we have Medicare along with BC/BS, it comes from Carelon Pharmacy. I just thought~~are you in the States? (It is a whole different ballgame in the UK)
The Actemra was prescribed for me because I needed it in addition to steroids, not as an alternative. As a steroid-sparing agent, it can enable people to taper off pred in a safer manner. $$ Good news, I have only a $45 co-pay for two months and then nothing....I think I come under a 'catastrophic medical'...though I don't feel catastrophic.
You seem really well-informed since you have certainly had your share to deal with. I have a dear friend with ankylosing spondylitis. I'm thankful your spondyloarthropathy was diagnosed since you had no inflammation markers. I'll be honest~I'm going to Google spondy---- now. My best~💞

I just had another thought~~~since your Dad in on Social Security; I'm assuming, there may be an avenue of assistance for him through the Department of Health and Human Services. A social worker friend took me to the Social Security Office and DHHS in 2019 even though I had a Medicare supplement....just had a thought to share with you. 💞
(I was so deep in brain fog then I don't remember details but I could get them for you if you wanted)