Hi
I was diagnosed with PMR back in July24 after a long delay and have begun Prednisolone treatment which is helping.
Unfortunately I do feel unsupported by my GP and get the feeling that alot of people think I am making a fuss about nothing.
Do other people have the same experience or am I just being hyper sensitive .
unfortunately others can’t see our pain and lack of mobility. It is common for others to not understand PMR.
Not sure what you mean by being unsupported by your GP. When I was awaiting diagnosis mine tested everything and in fact saw me every week for quite a while. I saw her after diagnosis for the next few months but then she said that she didn’t need to see me as I knew my own body and could taper as I saw fit and that I could get blood tests any time by making an appointment for blood tests. I felt a bit upset by that but then realised she was there if I needed her
Hi and welcome.
If you don’t have PMR or GCA you don’t understand the effect it has on your life - unfortunately a fact of many have discovered. We do understand.
As KJ has said, what in particular in your GP not doing?
Have look this and when you feel up to it have a trundle through the FAQs [link under your post and in the Pinned Posts] so you understand, and maybe can explain to others, some will be genuinely interested, some won’t -
My GP did not even diagnose it after months of saying it was a virus. I had to go privately to a rheumatologist!!
I told my GP I had pmr as my friend had it with the same symptoms. But she said take paracetamol for 2 weeks. Just gradually got worse. Saw a different GP and he said take paracetamol for 4 weeks.So in desperation I went to A&E 3 days before Christmas. I was diagnosed and put on 30mgs pred. Later I saw a rheumie who reduced me far too fast. So he eventually said to reduce at my own speed, which I've done...guided by this invaluable forum.
My private rheumie wanted me to reduce incredibly fast too. He got quite nasty about it when I said I could not go that fast and I was in a lot of pain. I then told him I was leaving him! He then got even nastier.
Hardly the way to retain patients or attract new ones is it!!!!
I sometimes fail to understand the thinking of some medics. They seem to think they can be rude to patients and the patients will still treat them like gods!!
Must date back to the days when a grumpy and rude surgeon was regarded as the epitomy of surgical skill ...
I once told the dermatologist who accused me of not getting a certain blood test, which I had, that she was blowing me off. Never went back.
Oh dear..mine was really nice but told me to reduce from 25mg down to 13mg going at the rate of 1mg every 3 days. I've never heard of that regime to this day. Not belonging to the forum I did as he said, all the while in pain. At 15mg had a huge flare in my spine and thought I was dying. I took an extra 2mg and from then on, reduced extremely slowly. It was then I saw him once more and we agreed I'd reduce at my own speed. It would never have happened if I hadn't been so ignorant.
Or him being so ignorant!!! NO suggested taper is anything like that!
Incredibly ignorant there. But then he drew me a calender he'd devised for when I got down really low, his version of the DSNS method which made sense. Strange rheumie.
But you have to get there first - and that isn't helped by barging at it like the proverbial bull in a china shop!
I am glad that your theumie changed his mind and was pleasant. Mine was even angry that my ESR had not gone down and blamed me for it. I was totally confused as I did not know what I had done wrong.
What a swine. We parted on pleasant terms and every 3 months I had a full blood test through my very nice GP. Having said that, rheumie was a waste of money. I got on much better being advised by the forum experts. 😊
Currently am sat in Urgences with a possible dvt. Couldn't face worrying about it till GP appt next week. Even with my face covered in spots due to rosacea, young Dr not over impressed. 🤣 Sadly some illnesses don't come with a flashing light on ones head! Also if one isn't feeling crash hot it's understandable to be feeling a bit sensitive. Chin up, allegedly it will pass. 🥀🥀
Thanks so much for all your kind words, so appreciated .Regarding my GP I think I was just disappointed that I received a mis diagnosis initially and was just sent off to have physio for a few months(in agony) Perhaps there is a little bit of unawareness amongst some Doctors and within the workplace.
You’re not alone in being misdiagnosed- nor in lack of awareness with doctors. As for workplace, were you aware of PMR before you got it? I certainly wasn’t aware of GCA.
So sorry to hear I can totally relate! I too have been misdiagnosed for the last three years. I was pushed to go the physio and also swimming which has been very expensive and not helpful. It has aided in my low mood.
After a rheumatologist was consulted over the phone my GP asked me if I had had any symptoms!!! 
Hi there, I noticed your comment on Rosacea - does Pred cause this ? I ask because I've had Rosacea for more than 15 years and I have controlled it pretty well until the last few months when it's been very difficult to do anything about. I had not linked it to Pred not that there is much I can do about stopping the Pred medication.
Yes, it can but not in everyone. I imagine that if you already have it, it could well make it worse.
My dermato said it was caused by the Prednisolone but it is also caused by 'a neurovascular and immune dysregulation'. Patients with Rosacea have a higher incidence of immune diseases than the general population. So is it the steroids or is it the underlying illness that provokes the Rosacea???
Thanks. That maybe fits with my hay fever which I've had since I was a child and I'm now in my 70's. 🙂
Or both ...
How did you get on in the ED in the end? DVT or not?
Thanks for asking, no dvt . Some sort of pulled muscle.
Sudden sharp pain as you pushed off that foot? Ouch!! But better than a DVT.
No, it started rather insidiously behind my knee and moved to my calf, thats what put the wind up re a possible dvt, even tho calf wasn't swollen. Anyway DDimer is neg. I've got a flare at the moment which hasnt helped. One wonders if the Rosacea, which was quite florid, set the PMR off. I was doing rather well and down to 15. Dropping down to 17 tomorrow. I'm off to see a Rheumato to investigate second line possibilités. The Rosacea, inc IOP, inc migraines as well as inability to get below 15mgs all add up to moderate misery. 🫣I reckon I've nothing to lose by trying mtx or Sarilumib if suggested. If dont help then i will just have to accept a reduction at an even more snail pace, and cross fingers that an autumn Covid booster doesnt set it all off again. Hey ho!
Hey ho indeed!! Hope it all sorts itself out.
It took me 5 years of going to the GP before I got a diagnosis (in the UK) - one that I had made and suggested myself!!! After that, I was handed pred and a few other things, one of which I declined to take after a long discussion with a different doctor, and left to my own devices. Even when patients are diagnosed fairly promptly, they frequently are handed pred and possibly a tapering plan and left to get on with it. Often they find us when it has all gone pear-shaped and since we are quite good at the tapering lark, they learn loads here.
"Perhaps there is a little bit of unawareness amongst some Doctors and within the workplace."
THAT is probably the understatement of the month, possibly even the year!
I am exceptionally lucky in my GP heing rheumatology trained and also being under one of the top PMR experts in the world who is the regional Head of Rheumatology. But I'm not in the UK at present.
PMR has been a very neglected field - partly the fault of the rheumies, Prof Dasgupta admitted as much at an international workshop recently that they had palmed it off to the GPs, thinking it was a simple, benign, short-lived illness. But now they are realising that is very far from the truth and PMR and GCA are opposite ends of a single but broad spectrum and very few patients are actually at those extremes. As a result many of us are much more complex and more difficult to diagnose and manage than they thought.
But the charity behind this forum has done a great deal to change that - but it still has to permeate to all levels of medical care. And in the UK at present, that is rather difficult to achieve.
I have had PMR for just over 4 years. It started during lockdown. I did receive sympathy from friends and family but to be honest when I started on pred 15mg it wasn't so noticeable. The GPs have me a set of medication and left me to it. As I reduced it affected my mobility more and in April 2022 I got COVID and although it wasn't bad in itself it disrupted my system. The GPs didn't know what to do and I wasn't under a rheumatologist. After that I found this forum and have had to educate myself. I am still reducing but feel as though I probably need a bit more than the 3.5mg I am taking but it has become very hard to unravel what is causing what. Basically I am saying that no-one seems to know that much other than take pred and reduce at your own pace. I would just say don't underestimate the side effects. For me they are all appearing like side effect Bingo. Make sure you take calcium and vitamin D. I was a bit complacent and now have osteoporosis. Two years ago I didn't. I took Alendrobic Acid as a preventative for first 18 months but a bone density scan showed I didn't need it but maybe I did. I didn't take was much Adcal as prescribed as I thought I was ok. Get a good physio if you can and keep up muscle strength from the start . Walk as much as you can. After a hip break I am now embracing crutches which is helping me to walk more. Good luck and keep coming back here.
you say the pred "is helping". How much are you getting? Is it enough to zap all the accumulated inflammation and keep the PMR under some sort of control? I think the knowledgeable here talk about an 80% reduction in pain. I am a wimp and take enough for no pain. Anyone without PMR doesn't realise that no pain doesn't mean no disease. I am, after 5 years down to 1mg, but I have suffered weakness and exhaustion throughout that journey (and still do). Having said that said some people definitely do much better once the PMR is under control.
My GP was impressed by this forum early on and has allowed me, with advice from this forum, to control my dosing throughout the five years.
My support comes exclusively from my virtual friends on here... no one else understands...really no one.
The 70% reduction in pain we talk about is really only in the context of diagnosis. They look for at least a 70% global reduction in symptoms in a short time, often days but at least in a couple of weeks. When it happens in hours or days it is felt to be confirmatory of PMR since other mimics of PMR tend not to respond so clearly. However, that still depemds on the dose being enough - and 15mg often isn't even though it is PMR. Slower responses are felt to suggest the possibility of something else such as LORA/
many thanks for this detailed explanation...so much to learn!
I do feel for you! As others have said because they can't see our stiffness and pain and we look well (the rosy cheeks and the weight gain help with this) they think there's nothing wrong. There's not much you can do about it. I usually just say that I have an autoimmune condition that makes me unwell a lot of the time and leave it at that. YES! Where would we be without our virtual friends, on this invaluable forum, who understand only too well?
Hi and welcome to the forum. Sorry that you also joined a community with a disease that probably you and most other people, including it appears many medical staff have never heard of. This is undoubtedly the place to come with your questions about PMR/GCA. Many members with years of professional and personal experience. I think the comments so far show up very clearly that there is a large element of luck involved with both diagnosis and treatment of PMR. I've been one of the lucky ones and had excellent treatment and support from my GP's and surgery. Like Koalajane I was left to decide my own tapering programme but that was only after many weeks of face to face and telephone checkups, blood tests etc from my GP's. All this during the pandemic as well. When they were happy that I was happy with how to carry on they left me to it (I also found this forum very early on) but were always there with help and tests whenever I asked for it/them. I was never under pressure to get off Pred asap. Do ask your doc to prescribe the Vit D and Calcium that you need, Adcal-D3 is a favourite and many of us take K2 as well which helps the calcium to get to the right place.
Pinned posts and FAQ's are brilliant places for perusing, when/if, bored as loads of information there which could/will also help you with discussions with your own doctor. If in doubt ask, always people here to listen and help and NO question will ever be treated as daft or stupid.
I find that people whilst they might seem to be sympathetic they don't really understand any of it for the most part. I've generally stopped talking about it except to people who show interest and concern and are willing to listen to what you have to say. Can be a bit isolating.
OH yea...100%
I think many of us feel that our friends, coworkers, etc don't understand our PMR because we "look" okay. Before I was diagnosed I lost a lot of weight and got quite tired of people saying "You look great!" when I was feeling the worst I'd ever felt in my life... I once snapped, "I'm sick", but that isn't really helpful. I tried to explain to those closest to me what was going on after I was diagnosed and the effects of Prednisone on my mood, etc. but they still don't really get it. I had my husband and sister read Kate Gilbert's book and I can talked to my sister about my issues now, although my husband thinks I "blame everything on Prednisone". I have given up trying to explain things to most people and found that they really don't want to hear about my health issues anyhow. I get far more knowledge, advice and support from this forum, to be honest. I think you will, too. they are not judgemental and many have experienced the same things that you are experiencing and can give helpful suggestions and caring support.
Tips on how to deal with fatigue 
I WILL DANCE AGAIN!!
It helps
Diabetes Type 2 finally.
Off the Prednisolone but still have pain
