PMR myth busting campaign begins today - The two-year-myth!

[Fran_Benson]

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.

We have posts appearing on Facebook (facebook.com/pmrgcauk) and Twitter (twitter.com/PMRGCAuk), an email to all our members and information on our website.

Please share this information with other patients, friends and relatives, in other PMR forums and with your clinicians.

Visit our website for the facts on PMR timescale pmrgca.org.uk/pmr-myth-bust...

Be part of the campaign - together we can help more people.

Fran

[piglette]

I often wonder if some doctors say two years, so as not to depress their patients by saying it could take years to go into remission!

[PMRpro Ambassador in reply to piglette]

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.

[piglette in reply to PMRpro]

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.

[Temeraire in reply to piglette]

Just Wow. Am jobsmacked!

[piglette in reply to Temeraire]

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!!

[Temeraire in reply to piglette]

Shocking ignorance and bad behaviour from a supposed professional! You did well to drop him.

[piglette in reply to Temeraire]

What’s more he was private and it seemed I was a cash cow. Silly man.

[Temeraire in reply to piglette]

Awful. Glad you got rid.

[piglette in reply to Temeraire]

I remember he left an awful message on my telephone. So much for customer service.

[Amkoffee in reply to piglette]

It's Dr's like that that make you appreciate the good ones.

[piglette in reply to Amkoffee]

It is finding the good ones is the challenge!

[borednow in reply to Temeraire]

Sadly, I'm not.

[Gimme in reply to piglette]

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.

[Gimme in reply to piglette]

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. 🙄

[piglette in reply to Gimme]

Reading the BMJ recently I notice that patients aren’t mentioned any more, just gripes about what a dreadful, underpaid life they all lead!

[krillemy]

Nice! Let us hope it works

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.

OR PMR is NOT an autoimmune disease..... ?

[Stills in reply to krillemy]

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.

Wishing you good days.

[PMRpro Ambassador in reply to Stills]

would or wouldn't surprise you?

[Stills in reply to PMRpro]

wouldn’t… thank you now edited

[krillemy in reply to Stills]

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..

[Stills in reply to krillemy]

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.

[krillemy in reply to Stills]

😅😊

[Gimme]

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.

[Fran_Benson Partner in reply to Gimme]

Hi Gimme, the figures were taken from UK doctors' records (some recent work looked at 27 million records and then extrapolated the data).

[PMRpro Ambassador in reply to Fran_Benson]

Yes, but there is no context in the sense of per year, ever or what.

[Gimme in reply to PMRpro]

That's exactly what I was trying to figure.

[oaktree5]

Can this somehow be sent to the new england journal of medicine and mayo clinic