Could anyone clarify this for me please? “I would warn that you need to be very mindful of your symptoms though, if left untreated PMR can morph into GCA - a very different and dangerous beast.”
If PMR isn’t treated with steroids, what % then go on to develop GCA? This figure must be different to the 20% of people who will go on to develop GCA when taking steroids. Hope I’m making sense? I’ve just got this niggle that’s at the back of my mind because I’m not taking steroids for my PMR.
many thanks! 🙂
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Bramble2000
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have I done my profile correctly? I’m so very grateful to have found you and this forum. I must admit that at first I thought it was going to be the usual kind of “support” group whereby no one really knows anything and they are just there to have an argument. 😆. This forum is like the platinum standard of support groups/forums!
A bit more detail in your bio probably couldn't come amiss - maybe ask DorsetLady what she thinks, I tend to skim through past posts and have a memory like the proverbial elephant and, like her, have read every post at some point so know if a story is complicated.
We do our best - and are VERY harsh on internet woo claims and except on specific advertised occasions there are no cute pics if they aren't associated with a real comment or query. But at the same time we do try to have a bit of a laugh now and again.
I know you have a lot of problems, but maybe just a brief resume of what’s gone before and the situation you are in now…doesn’t need to be War & Peace but enough to give others a feel.
As PMRpro has said both she and I read every post [so we are more apt to know a person’s background] - but most don’t…which is why you may get asked the same question by different people. Saves you answering each time..
I see that you are near Brighton. Is your Rheumatologist at The Royal Sussex? I know it is hard to get a reply from their phone but the secretary has been known to call back if you leave a voicemail. The consultant is Dr Christina Tacu. I would say why you are worried and ask whether you could be given some clear information about this.
I don’t want to bother them with this, it’ll cause me more stress then it’s worth. I have a feeling that people here would know more anyway. My rheumatologist is Dr Raj at the RSCH and we don’t see eye to eye. is Dr Tacu your rheumatologist? What is she like? I had Dr Hajela for many years but he’s left the NHS. However, I paid £280 to see him privately recently and he said the exact opposite to Dr Raj and a load of twoddle thrown in! I get very easily overwhelmed with it all. Thanks for replying . X
I have only met her once - at my last visit. It is usually a Registrar at The Royal Sussex and they change every year. Tacu is enthusiastic and charming. Whether she is correct to take me off prednisolone will have to be proved by experiment.
really? That’s interesting to know. It’s almost 3 years since I was diagnosed with PMR and the word ‘rheumatologist’ has never been even uttered by any of the doctors I’ve dealt with.
I’ll look out for those pink things flying across the sky in the meantime 🤣
Good luck with all your issues Bramble2000. Don’t know what I would have done without these fabulous people on here. 😁
This article is fairly typical and states 15%. I’ve seen 20% elsewhere. I’ve not been able to find research to say definitively how many develop GCA if their PMR is untreated. I guess it’s not ethical to do that scientifically. The difficulty also is that GCA can be present and be asymptomatic, even large vessel vasculitis.
This paper below states: “GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2].” What it also supports what I said above in that large vessel vasculitis can also be present but is asymptomatic. Your risk of aneurysms and stroke will be higher and you may not realise it’s there.
The trouble with stats is that you don’t know which camp you’ll fall into. Sometimes, albeit rarely, with GCA there is no warning and blindness just happens as the first sign. Hopefully, there are enough signs for long enough for a doctor to twig that’s what you’ve got and treat it in time. I had niggles but nothing that would suggest GCA but then over 48 hours it went ballistic. My treatment was swift but other have not been taken seriously. Usually though, if you already have a PMR diagnosis they will take you more seriously if you are lucky enough to have mild early symptoms.
Uk info found last year - and approx - not sure there are definitive numbers.
PMR is likely to affect 4 in 10,000 people (1 in 2,500, although some sites says 1 in 2,000)
About 1 in 20 (5%) of those on treatment for PMR - or 7 (35%) out of 20 people with untreated PMR are likely to develop giant cell (or temporal) arteritis, a related condition causing inflammation of arteries.
GCA likely to affect 22 in 100,000 people (1 in 4545)
"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated"
referencing Dejaco C, Duftner C, Dasgupta B, Matteson EL, Schirmer M. Polymyalgia rheumatica and giant cell arteritis: management of two diseases of the elderly. Aging Health 2011;7:633–45.
Somewhere I have seen that they think maybe 7x more likely in untreated than treated.
I will see him a week on Monday - I'll try to remember to ask.
I can only add my personal story to all the info given already ... gradually worsening PMR symptoms for maybe 3 years, untreated because I was not aware that it was anything other than aging and didn't want to waste anyone's time! Sudden onset of extreme fatigue and breathlessness led to eventual diagnosis of GCA and LVV via Petscan and TAB. Would they have developed if I had gone to a GP sooner with my aches and pains? Can't say.
I have told my story before and it may be worth repeating. I had pretty classic PMR for 4 years that responded well to Prednisalone treatment. My tapering was fairly uneventful but I did stall at 7 mgs for a year. I crept down to 3 mgs, feeling that PMR was definitely in remission. My most recent Synacthen test showed that my adrenal function was capable of working. I had begun to feel headachey and generally unwell. It wasn’t my familiar PMR symptoms. My excellent Rheumatologist decided to commission an ultrasound scan. This showed the tell-tale halo effect in the arteries of my left armpit. My steroid dose was immediately put up to 30 mgs and then 40 mgs. I began the slow taper down. I had none of the recognisable, typical symptoms of temporal Arteritis but did feel generally unwell. I found tapering harder because there was no clear cut symptom picture - either worse or better. My diagnosis is GCA/Large Vessel Vasculitis. I am now down to 5 mgs and my principle symptoms are from diverticula disease and IBS type symptoms and viral feelings. I have found this much harder to manage than PMR with fatigue and malaise. I have regular thorough eye examinations and am alert for typical GCA symptoms, I have had Covid which clouded the picture. I feel ready to come off Pred but hesitate because I cannot get 1 mg coated tablets ( Pred). Uncoated tablets make my lower abdomen unhappy in spite of stomach protectors and food. My diet has become very restricted. I am not sure if this is Pred damage. My mobility is quite bad - not sure is this is simply the lack of meaningful exercise. Quite stuck really but GCA/LVV came silently in a non typical way when I was nearly done with PMR.
Your story which I have been aware of for some time has been in the back of my mind, thinking something else might be going on.....we just never know because we feel so unwell so often......like you a restricted diet because of "sludge in tummy"......poor mobility.......
I find all your comments really interesting. An excellent (you may think otherwise ) rheumatologist that I saw recently said that in his opinion PMR and GCA are 2 different illnesses, and that if you develop GCA while apparently suffering from PMR, you have had GCA from the beginning, rather than PMR. Has anyone else heard this?
I don't agree with the concept of two different illnesses - they are points on a spectrum and you may have "just" PMR or you may have GCA that manifests as "just" GCA or you may be somewhere in the middle and have LVV that may be due to the large cells of GCA (but you can only identify them with a biopsy and that isn't at all practical) or another sort of inflammation. This is a good discussion and explanation:
I think the difficulty is that some people can have PMR symptoms for years without any sign of GCA and then suddenly something in the autoimmune part of the disease changes.
Yes, thank you, PMRpro - this is useful. I said the rheumy was "excellent" because he gave me masses of time, and also contradicted his own department by saying that it would be ridiculous to go onto Methotrexate when I am down to 1 1/2 mg. prednisilone - which is what you all said!
I have mild, atypical PMG and I was disinclined to start treatment. But I was given a similar warning by my rheumatologist, i.e. I would be putting my sight at risk if I did not start a course of steroids.
When I asked a question similar to yours about the statistics she was unable to give me any useful information.
PMR is a risk factor for GCA, but being off steroids doesn’t cause GCA. They are associated. If there is a concern of GCA, you need to see a rheumatologist ASAP due to the risk of blindness. The diagnosis of GCA has strict criteria, but relies heavily on the presenting symptoms. Hope this helps and please seek expert medical attention if concerned. Best of Luck and here’s to your health!
I don’t have GCA . From what I’ve read, leaving PMR untreated makes it slightly more likely that GCA might occur. I know all the symptoms and have been under a rheumatologist since 2006. All the best to you.
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