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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
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~💞
Replies to "Hi Emo, I just thought I'd let you know that I have Medicare and BC/BS and,..."
Thanks! That's good to hear. Well, we have an appointment with my dad's rheumatologist on Monday. An alternative infusion may not be necessary or appropriate, but I like knowing there's an option that helped other people. He's been on 7.5 mg of prednisone for 6, going into the 7th week, so it's possible when we resume the taper things will go smoothly...or not >_<
He has Medicare + BCBS, and we are in the States, so here's to hoping.
And haha, I am glad I got diagnosed with "seronegative spondy" (as my rhematologist calls it) too! When I think of how close I came to not getting treatment, it's a bit scary. I did not mention this because it is the PMR threat after all >_
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The following link provides a good summary of the various types of spondyloarthropathy
https://www.webmd.com/arthritis/types-of-spondyloarthropies#:~:text=Spondyloarthropathies%20are%20forms%20of%20arthritis,people%20as%20they%20get%20older.
People with PMR should be aware of these autoimmune disorders because it is very common for someone to be diagnosed with PMR when they actually have spondylitis. Nobody should be telling anyone that a rapid response to prednisone is diagnostic of PMR. When I was diagnosed with reactive arthritis, I was given one handful of little white pills. I was completely "cured" as in remission 24 hours later. I was 32 years old at the time so PMR was never considered as a diagnosis.
PMR was diagnosed when I was 52 years old and I fit the criteria. A fast response to prednisone was only part of it. All my autoimmune conditions responded to prednisone in a similar way.
My prior diagnosis with reactive arthritis confused my doctors at first until three different rheumatologists did an evaluation. The consensus was that I had PMR. I asked what happened to reactive arthritis thinking I was misdiagnosed for 20 years. I was told that I still had reactive arthritis along with uveitis and they were both still there. Unfortunately, I was told that I had both PMR and reactive arthritis and everything else that goes with them.
When the immune system is deranged, it isn't limited by a diagnosis in a way that it can only attack certain areas of the body such as the blood vessels in vasculitis. It is likely the immune system will attack healthy tissues anywhere it chooses. People tend to have multiple problems anytime they have one autoimmune disorder diagnosed. Anywhere in the body is fair game for the immune system to attack. This is demonstrated well in the following diagram:
https://enthesis.info/pathology/spondyloarthropathies.html