The first post in our PMR myth busting campaign goes live today.
The myth we hear so often from patients is that they will recover from PMR within 2 years. This is true for many (research suggests around 50%) but not all. If you've been diagnosed with PMR, do not be disheartened if it takes longer to resolve.
I have had some say that to my face - so I pointed out that it is actually infinitely worse when the patients get to 2, 3 4 years and it is still there so they feel they have failed. Then there are the totally insensitive doctors who infer and even TELL them it is their fault.
And it is the untrained but experienced volunteers in the charity and forms who have to dry the tears and do the counselling and get disillusioned patients back on tract with approaches that work to give them a more realistic journey and life.
I had one rheumatologist who blamed me for having a high ESR that did not reduce enough. I was very new to pred and did not know what I was doing wrong. I had to pacify him that the ESR had reduced a bit even though I knew nothing about steroids or ESR at the time.
He was really angry that my ESR had only dropped from 125 to 90. I just did not know what I had done wrong. I did drop that rheumatologist in the end, he was really angry then too!!
Good grief! What a horrible experience. Just what you need when you are sick and are in need of support, not! Someone like that should never be a doctor.
I came to the conclusion that they are protecting their own feelings, not the patient's. They can't cope with the reaction of a patient who has just been told that they have a life changing chronic illness that may or may not go away and now we are going to give you a big bag of meds that all have their own issues to deal with. So they jolly you along with the thought of, oh well never mind, you are only going to feel crap for a couple of years. Thanks, I feel so much better now. 🙄
It is also strange when you think of it, that PMR (and maybe GCA) is the only autoimmune disease that does goes away! Actually it seems that the beeing "Chronic" is part of the definition of an autoimmune disease. If other disease enters a periode of no symptoms, it is not curred, just not active. Sometimes it remains inactive for the rest of peoples lives.
Since PMR often is digosed at older age, maybe we are not cured, the disease is not active, and we simply dye before we flair again.
Interesting point. My diagnosis is Stills Disease which for me manifests as RD it’s kind of PMR/Lupus/RD cocktail. It’s incurable and seems to have attracted other AI conditions of the same ilk, such as Lichen Sclerosis and Interstitial Cystitis and an as yet undiagnosed skin condition. I have developed Uveitis and Enthesitis recently too. Im currently being investigated for ovarian or gallbladder cancer ( they don’t seem sure what’s going on) but it wouldn’t surprise me if it all turns out to be AI related like Autoimmune Hepatitis or Pancreatitis. Conditions Autoimmune Disorders and conditions have a lot to answer for don’t they.
Sorry Stills - that sounds like a lot. I do not know what RD stands for?
I to have other AI diseases - I think they just have a hard time catagorisng them into meaningful boxes, but Lupus do capture a lot. Need the ANA positive blood test here en DK though. I was testes for canceer severel time, sclerosis, Lupus, ALS (times 2), PsA (still Obs.), and all the myocitises..
Sorry / rheumatic disease , I use that term as Stills is not really an arthritis I think and I don’t want to give the wrong impression. If I say RA people expect to see twisted joints.
I'm puzzling over the figures in the article. 225,000 people with PMR doesn't seem like very many, when it is often quoted that 1 in 1200 people will get it. I am supposing that figure refers to the number of people who are receiving treatment and therefore have active disease at any one time. And does not include the people with a diagnosis, but are either in remission or not currently receiving medical treatment.
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Beginnings of PMR or Pred withdrawal?
PMR 3.5 years & holding
GCA/PMR One Year on (?)
GCA progress two years on
