An opportunity has arisen for suggestions to be used for short articles/videos on a rheumatology website that provides information for rheumatologists, mainly in the USA as a target audience but being online is available to anyone,
Is there one thing you wish YOUR doctor knew or understood about PMR/GCA that would have made your journey easier? Please tell us in a short reply here. It is a short deadline - all must be prepared for submission by Thursday!!!!
Get to grips with corticosteroids. Learn and understand the we have to take them. Learn how to advise newly diagnosed to help themselves to mitigate against some of the side effects, like low carb diet. And don't hassle people to taper when it's clear that the PMR isn't ready to be tapered.
Thanks Pro :
An easy one , ESR , CRP , can remain unchanged or appear lower than expected, in approximately 20% of PMR patients.
The positive reaction to Prednisone (U.S) , whilst later ruling out other conditions with blood tests , is an indication of disease presence .
From a personal perspective, I’ve wondered if this is mainly found in younger patients?
I think mine is the old thing, the myth about how long PMR can last. I like many was told 18 months
Consider bone health when prescribing pred - vitamin D levels, DEXA scan, calcium intake - before prescribing a 'blanket' bisphosphonate.
Even the Nurse Practitioner I spoke with the other day knew that weaning off Prednisone too quickly could cause PMR symptoms to reoccur ie. flare. I wish Rheumatologists in general knew this, instead of eg. 5 mg. every other week (in my case). Of course, I don't do it her way.
That when they first prescribe pred they knew, or would exlpain that we are nor rducing relentlessly to zero but finding the most effective dose on the least pred, and stop saying '"We have got to get you off the steroids" which caused me a great deal of anxiety.
Been lucky and not had any problems so far with my GP but from the forum I would guess the following would be relevant.
Tapering at a speed that suits the patient not a generic idea on a piece of paper.
PMR/GCA doesn't last two years for most people, patients need to know, understand and accept that.
DEXA Scan offered as a matter of course to give a baseline score to determine present/future drug needs.
Acceptance that ESR and CRP are not definitive factors and may NOT be raised in all patients.
Patients need a supply/reserve of Pred to cope with any unexpected/sudden flares/problems.
Above all listen to their patients, it is their body and they can/will know their symptoms far better than anyone else.
I'll add
A proper explanation of Pred, its POSSIBLE side effects and an explanation that you may suffer none, some, or all of them if very unlucky.
Quite simply - there is no "one size fits all" approach.
I would have liked them to understand that the 'Guidance' they use to advise their PMR/GCA patients, is out of date, inaccurate on several points and not a particularly useful or effective tool for managing patients with these conditions.
I live in the US and am lucky to have a wonderful rheumatologist. But my advise to other rheumatologist is to allow your patients for freedom to adjust their dosage based on symptoms. I have found that endocrinologist are more flexible with dosage with their patients that have adrenal insufficiency. It's not like prednisone is a narcotic. But some doctors are so militant about it its like they think we take it to get high or something.
I wish drs were more open minded about age of disease /conditions , I have had so many medics question my GCA diagnosis because of my age ‘ it won’t be GCA you’re too young’ even info on websites and guides regarding GCA talk of it being an older persons illness and use photos/illustrations of older people in their information. Not a problem but I wish there would be a balance or mention of younger people having the condition.
But at 54 you aren't too young!
I know but many medical people i saw felt I was .. lots of medical info online also talks of GCA affecting mainly 70+ yr olds so I guess that only helps to perpetuate the mindset . I know others on here thst have had similar experiences
The international guidelines ALL say over 50 ...
Apparently some rheumies don't bother reading the guidelines. Mine insisted I was too young to have PMR at 52. She was wrong of course.
Oh we know!!!
Hence the proverb - “you can lead a horse to water but you can't make him drink” …. And even if they do, some are still selective about what they take onboard ..
Mine too - and he was supposedly a PMR expert on the panel that writes the guidelines!
Which is why it takes so long to achieve a consensus ...
Hopefully when the guidelines are next revised the knowledge of the last 10 years will form recommendations. We have reasond to be hopeful that there are great researchers out there pushing the envelope like Drs Mackie, Dejaco et al in what has been a very neglected area for years.
Even if they just got age and duration correct it would be a start!
Certainly would have saved me a lot of pain and grief
They know - but the guidelines are debated over for months, even years. That's why the last GCA ones were delayed so long. And as long as there are intransigent dinosaurs and no definitive studies, it won't change much. And studies cost money.
Awareness of connection between PMR and GCA. Importance of getting an eye exam from someone qualified to check for GCA signs, as well as ocular pressure. Need for DXA scan, and up to date information on maintaining bone density without medication. Pointers on how to avoid pred weight gain through diet.
I figured all this out for myself but a lot of people probably would not.
I wish doctors did not seemingly work from a tick off list.
PMR = steroids + methotrexate + Bisphosphonates
Time period = 2 years
Steroids are bad
Please think of patients as individuals and don’t assume everyone is identical.
Identifying link with subsequent changes in symptoms and recognising link to GCA/Tak to enable earlier diagnosis and treatment of the associated conditions
A relapsing patient on Actemra will not have elevated CRP and ESR
I was diagnosed with the flu for over 9 months. It took losing sight in one eye for me to be diagnosed with GCA. I would like more education and awareness of GCA. Even now, I find that dealing with certain medical issues, the implications of giant cell arteritis and the ramifications of taking a biologic.. are not understood. .Awareness! Awareness! Run the appropriate blood work.. That is my plea to the medical community in the United States!💞
I wish my Rheumy had put me on a much slower taper, and left me on new dose much longer before tapering again. Giving the body time to adjust properly. It would have saved me yoyoing for so long.
We realise that PMR is not life threatening, but it is life changing. They need to be more aware of this and understand that if pred gives us some quality of life, we must be allowed to continue to take it and not forced into painful and stressful reductions.Perhaps an occasional dip into a patient forum such as this one will open their eyes.
I would like our doctors to be more acutely aware of the close relationship between PMR and GCA and to look for signs of GCA as a matter of routine in PMR patients, particularly the harder to diagnose non cranial GCA.
My thoughts are as follows:
- Don’t let your first question when you see me at my appointment be ‘what dose of steroid are you currently taking’. Yes, you need to know but ask me first about my mental health and how I’m coping.
- Don’t deny me a DEXA scan at the start before I take Prednisone then tell me later I can’t have one because I’m taking Pred.
- be aware that 20% of PMR sufferers don’t have raised ESR/CRP markers and don’t insist I reduce when I know I’m flaring.
- try to see things from my perspective, I don’t want to take Pred but I can’t stand being in pain more.
- don’t pressure me to taper my Pred when I can’t and make me feel I’m useless because I can’t adhere to your tapering instructions.
- don’t make me dread my next appointment with you and feel that I have to have someone with me for moral support.
These are just my personal experiences and I know that many of you have better support from your rheumatologists.
Thanks.
PMR will not be bullied into submission, only coaxed gently with very gradualy reducing Pred.
If only my GP had known !!
I wish my G P had explained about inflammation which causes the pains/symptoms from the outset and that it can only be lowered or controlled by Pred. That Pred does not stop the autoimmune disorder; that no one really knows why it starts or what triggers it. I was told it was probably from one of the recent vaccines - pfizer or flu. That the initial dose of 15 mg will be a very quick relief of the symptoms, but after that the dose has to be tapered and will take a long time. Tapering advice should not be what NICE gives i.e. tapering 1 mg per month but 0.5 mg. This was inappropriate and I had to start again after a flare. That this is not a condition related to rheumatism but a vascular type. They should give the address of PMRGCA uk society from day one. They should warn about osteoporosis and having a DEXA scan. In fact all the above details could be put on an advice sheet for new patients. People who have the pains suddenly and get diagnosed the very quickly have a better chance of the condition burning itself out within a year say. I could only get a diagnosis after 7 months despite flagging up the usual symptoms after insisting on a ESR blood test. NHS choices could also have a better page where you could type in the symptoms of PMR or other conditions and they list possible diagnosis which you can show the GP.
Being aware and discussing the effects of the adrenals etc needing to return to action (or not as the case maybe) It seemed a real kick in the teeth after years of pmr, flares and slow tapering to realise another monumental hurdle was there. I still have only heard about this on this forum - never from a medic
Whoops. I hit the wrong key. Let me start over. Being in the USA (South Carolina) i am interested is this video. I would like to have had more assistance in the tapering process. My GP was thorough and helpful in guiding me along through PMR and i never seemed to need a rheumatologist. However, his idea of tapering slowly needed some tweaking. I received MUCH more useful information from this forum!!
I wish doctors would not dismiss the importance of group support!! And this forum has so many individuals (like yourself) who have the credentials and personal experiences to assist the rest of us who are so new to this condition.. thank you
How to manage the side effects of Pred, from weight gain, insomnia, raised BP and blood sugars, mental health changes etc etc - there is a big list in the patient information leaflets but this is never discussed. Also that it is a life-changer, you can't just take the tablets and carry on as you were - this is particullary hard for those of us still trying to work in our 50s and early 60s.
The bulk of rheumies, in Australia at least and from what of read above, worldwide, seem to want to jolly you along and minimise this disease. And they seem to minimise it in their own minds too but at the same time are SO overly concerned about long term use of low dose pred. I'm on to my fourth rheumy in less than 3 years. The third was great, but sadly she stopped practice and returned to research.
So - That this disease is life changing. That the physical impacts will naturally have psychological impacts, especially in the early stages, and that this is normal = that the pain, stiffness, fatigue, brain fog, weakness, limits on exercise and abilities will impact your life AND the lives of your nearest and dearest. You will all need to adapt both physically and mentally, and provide lots of reassurance to each other.
That a low carb diet will help.
That pred is your friend, and not the "devils tic tacs", as I have read on other support groups.
That reduction should be no more than 10% of the previous dose.
That below a certain level of pred, there is a chance of adrenal issues, and how this is managed.
And in Australia, I wish we were given advice sheets that seem to be wisely provided (if somewhat limited) in other countries.
Was that Claire Owen by any chance?
Yes PMRPro. You recommended me to her and she is great. Fortunately for us all, she is undertaking further research into PMR, focussing on a double blind study of an experimental drug. The details are in my notes somewhere. so I'll dig them out and let you know what that drug is currently called.
That is the trouble - the ones who do research know about it but when they are researching, they can't see many patients too, Sarah Mackie is the same.
Hi PMRPro.
Claire Owen was researching the drug ABBV-154 for PMR . However, I just found a reference that says that the drug company withdraw the research earlier this year. So no joy there for current or future PMR patients.
evaluate.com/vantage/articl...
"Abbvie also ended development of ABBV-154, its novel TNF/steroid conjugate for RA and Crohn’s following “changes in biomarkers consistent with systemic steroid exposure” at higher doses. "
I wonder if that is the project I was involved in as a patient expert in the UK. I have to say - I wasn't impressed at the time!! I did ask the question about price - but at the time I hadn't realised that Humira had come down in price tremendously. I hadn't realised it was a steroid conjugate but I couldn't see why a TNF inhibitor would do a lot in PMR.
Hmmmm I dont know. It was a world-wide double blind study conducted, I believe, from the latter part of last year to about April this year, when it seems the trial was pulled. Patients who had relapsed at least twice were invited to participate. I happened to decline participation for a range of reasons, but it's now apparent that I didnt miss much.
Yes, I'd like them to realise its not only in the temporal artery which is involved.
Some present with vertebral/ basilar artery area pain and can also have shortness of breath when relapsing
(aorta symptoms).
To not automatically dismiss the possibility of PMR in patients younger than 50 or presenting with an atypical pattern.
To explain to patients that weight gain and diabetes on pred are not necessarily an inevitability and how it can be avoided, or at least mitigated. In fact getting info right at the beginning on how best the patient can take care of themselves for the best chance of eventual recovery and to manage the potential complications of the illness and the medication. Give them something positive to work towards.
Recognition that being diagnosed with a chronic life changing illness takes its mental health toll and the important role that managing mental health has in eventual recovery. Patients need to feel supported and empowered to manage the physical effects of the illness.
This is a fantastic summary thread - it needs to reach all rheumatologists. Could you deliver a talk at some of their conferences maybe? This is one of the crucial missing links the charity isn't yet doing, educating the medics. Instead we are encouraged to defer to their 'superior knowledge' and 'do what your doctor tells you' rather than them listening to us!
Read the post again, that was the point - and Sarah is over the moon with the response. She was astounded at the response after 24 hours.
Yes but as someone said above, there is no guarantee the right people will read/see this info on that particular website 'yu can lead a horse to water' and all that. We need to try lots of different ways of reaching out to rheumatologists - and they'd listen to you - they DO listen to you!
The ones who know listen - the others won't listen to me or anything else. Someone on the forum said recently that she takes no notice at all of anything published outside the USA - we know no-one reads work not published in English. The University of Graz makes all its students write their Dr theses in English because they know that those students MUST be able to write well in English. It is often better than I see from so-called native English speakers!
The bottom line is money, it always is.
Ah, so the info will come from a rheumatologist, that should give it some credibility, though like you say it's impossible to convince those who refuse to listen. I'm surprised that more resarch hasn't come from countries like Germany and Scandinavia, where you'd expect a higher incidence of PMR if indeed the viking gene may be involved, and they think it is when it comes to GCA. I remember studies centerng on East Anglia mentioned in a PMR AGM years ago, though can't remember the rheumatologist's name. People from there rarely move out of the area apparently so have long lines of local anglo saxon ancestors!
nnuh.nhs.uk/news/2021/07/im...
The author is actually a 2 year adherent.
Yes that's the one. I remember he got a mix of guffaws of derision and disbelieving angry faces when he confidently 'declared' that GCA disappeared in 100 weeks. Earlier in his presentation he said the first stage in becoming an expert in something is to declare yourself one, which should have warned us. I hope he's been enlightened since. Also as there is a higher incidence there of GCA is there also a higher incidence of PMR? It doesn't even get a mention, I wonder if anybody has bothered to look at GP records? Awareness and treatment of GCA is thankfully improving but still so little is known about the ugly sister PMR 
Are all cases of GCA referred to a rheumatologist or are some dealt with by GPs?
Some are dealt with by GPs - DorsetLady didn't see a rheumy but the eye people had diagnosed it after she went blind in one eye. Generally though a query GCA really should be referred to a specialist as they have access to tests and drugs that GPs don't.
Mine was diagnosed by ophthalmologist who looked after me for first 6 weeks or so -but when he referred me back to GP he also said I should be referred to Rheumy..
However it was 7 months before I actually got an appointment with Rheumy (long before Covid) and tapering was going well.
He wasn’t in the least interested (think he was miffed because another specialist had diagnosed me and the fact that I commented on GP who made a complete horlicks of the whole thing).
All he offered was an MRI of my shoulder -and following the report, cortisol injections for rotator cuff issue!
I declined as had already had 3 from GP diagnosing GCA as frozen shoulder. So he referred me back to GP as we had a tapering plan formulated.
Even though she had got the diagnosis completely wrong she did actually work through my treatment well -and listened to me a lot more than any Rheumy would have - for obvious reasons.
After hubby died I did move to another surgery -and senior GP there was really clued up on GCA…
I guess it's a case that not all GCA patients need a rheumatologist, but at least then they would get to see more cases and realise it doesn't always go away in 2 years, and that a simple taper off an nitial very high dose of Pred doesn't always work or run smoothly, etc etc.
Flares and relapses are very common. They can be brought on by reducing steroids too fast or too soon, and also sometimes randomly such as by overdoing things, the cold of winter, stress. And they usually need to be sorted by temporarily increasing the steroid dose to mop up the extra inflammation - PMRPro's 'dripping tap' analogy - which in itself is worth an article
1. That steroids don’t cure it.
2. That it doesn’t just last one year 🙄
3. That there’s an ugly big sister (GCA) that you should be aware of.
oh, and another, stop speaking like we are crack addicts when we find it difficult to reduce the pred dose.
That it's not just old people who get it, there are many of us in our 50s, and probably many more younger women don't even get diagnosed because it isn't on the GP's radar so they're fobbed off with diagnoses like fibromyalgia or chronic fatigue syndrome
GCA / PMR 
PMR?GCA
gca/pmr
PMR morphing into GCA
PMR/GCA in the news
