Struggling to get a Diagnosis

[Only45]

Has anyone been diagnosed with PMR? who suffers from multipe random muscle & joint pains, has high inflammatory markers but does not have red swellings?I have been dismissed by 2 Rheumatoligist's because I do not have any red/hot or swellings on any of my joints.

[piglette]

I don't understand why rheumatologists are saying you should have joint pains with PMR as the name actually says it is pain in many muscles! I have not heard of red swellings being something that you should have with PMR. I found that it started in my shoulders and that I could not lift things. Then in my hips. In the end I could hardly get out of bed and to raise my arms was agony. My GP diagnosed a virus. In the end I saw a rheumatologist privately who diagnosed PMR. Can you get your doctor to prescribe steroids for say a week and see if it alleviates your pain if you have bilateral shoulder and/ or hip pain?

[123-go]

Hello, Only45. I’m so sorry you find yourself in this situation. You are indeed young to have PMR but I believe, although rare, it is not unheard of. The fact that 15mg eased your symptoms and that they returned on reducing to 5mg after a week does indicate that you do have PMR. The reduction in itself was ridiculously fast and by far, far too much. The accepted reduction after around a month on 15mg is 12.5mg for a month and tapering slowly from there.

PMR is a disease of the muscles and surrounding tissues which become inflamed and cause pain and stiffness.

Did you have blood tests to rule out other conditions? If those rheumatologists have ruled out PMR what is it they think you have? What is being done for you now?

[Only45 in reply to 123-go]

I had lots of blood tests to rule out other things but because I had a rash on my legs and buttocks for a couple of weeks when I got out of hospital she suggested it could be EBV or CMV but both of those came back negative. af I received 2 follow up letters from the Rheumatoligst who's suspected diagnosis was Sweet Syndrome and that if my symptoms and rash reoccur then I should be referred to dermatology and that there are no symptoms or clinical findings to suggest an inflammatory rheumatic disorder.

[123-go in reply to Only45]

Thanks for coming back. I’d never heard of Sweet Syndrome so looked it up and my thoughts are that the rheumatologist was clutching at straws feeling he needed to give a name to something he was not capable of understanding……my opinion entirely I hasten to add.

I I agree with DorsetLady that your GP seems to be the one to stick with and who is more likely to be of help. I don’t know very much at all about the US national health system and the types of investigation open to you where the NHS will cover you but I found the following article that was written by an eminent rheumatologist based in the UK who has spent the whole of his long career researching and treating PMR patients:

gpnotebook.com/simplepage.c...

When you next see your GP for results of latest blood tests and if you aren’t getting any closer to a firm diagnosis, your GP may be interested in reading this and possibly will refer you for an ultrasound scan which is a reliable diagnostic tool for PMR.

We’ll be thinking of you!

[Only45 in reply to 123-go]

Thank you 123-go & everyone else on here who has replied it has been so helpful. I have learned a lot that I am going to tell my GP about when I see her on Wed. I am now 99.9% sure it is PMR that I have.

[PMRpro Ambassador in reply to Only45]

PMR isn't the disease itself - it is the name given to a set of symptoms and there is a range of possible underlying causes. PMR as we discuss it is a diagnosis of exclusion - you exclude everything else and if PMR is left, you treat for PMR.

However - that process seems to have been ignored! Your GP can start it but some of the options may be a bit beyond them.

[123-go in reply to Only45]

Good luck and please let us know how things go. 💐

[mpartrid]

I am 47, diagnosed with PMR just over 12 months ago based on bilateral pain in shoulders, hips and elbows accompanied by high inflammatory markers. Have never had or been asked about hot or swelling joints. I am currently down to 6mg dose of Pred.

[SnazzyD]

swellings? Did they actually say the swellings denoted PMR or is it more for something like rheumatoid arthritis? I think the question is, what are they doing to rule other conditions out? When I got GCA (related to PMR) I had autoimmune type blood testing and others which made a huge list. The fact that Pred at a moderate dose helped you, suggests something inflammatory is up. On what grounds did you see two doctors? Your request for a second opinion or were you passed on?

[Only45 in reply to SnazzyD]

I seen one when I was in hospital who wouldn't even wait until the nurse had finished taking my blood from a vein in my arm that already had a blown vein and he was in and out in 5 mins and only seemed to be concerned about if it was sore when he was touching me and if I had any swellings. I then seen another as an outpatient and it was quite a detailed consultation, however I don't think they were even considering that it could be muscular and we're focused on it being joint related as I already have osteoarthritis or some kind of infection which they later confirmed it was not.

[DorsetLady PMRGCAuk volunteer]

I think your doctors are confusing PMR with Rheumatoid Arthritis - that’s when your joints are likely to be swollen and hot.

Or is it because you are only 45! Some think you are too young for PMR. That's rubbish as we know...

Your symptoms sound very PMR ish to many on here.

[Only45 in reply to DorsetLady]

Yes I think so as they mentioned Polyarthralgia on their letter which is pain in multiple joints but never mentioned Polymyalgia. The blood tests they carried out showed v mild monocytosis, raised CRP 79 & ESR 52.

[Only45]

Thank you all for your comments I was in hospital in October because I had very high CRP inflammation apparently it was 250 and then came down to 57. I saw a Rheumatoligst in there who basically said my pains were due to wear and tear. I also have osteoarthritis in my fingers on both hands and have suffered from shoulder pain for many years. My lower back started to be a problem when I started working from home during Covid. The random muscle and joint pain started in Sept and I thought I had a urine infection because my lower ribs were sore and I had a fever at night times, I then started to have pain in both of my knees, elbows, wrists, arms, thighs, hips, sides, pelvis and in the mornings when I woke up I just felt like my whole back and legs were stiff and when I moved the pain in my ribs started. When I got out of hospital I realised I had a rash on the back of my thighs and buttocks. I went back to the doctors who referred me to the Rheumatoligst who in the end diagnosed Sweet Syndrome due to the rash and I was prescribed the steroids for 6 weeks and was advised that if the symptoms & rash returned then I should be referred to Dermatology which I thought was absolutely ridiculous as bye then the rash was long gone but I still had the symptoms. So I seen my GP yesterday who kind of agreed with me and when my blood test results come back she is going to decide if she is going to send me back to Rheumatology. She has put me back on 5mg Pred reduce it my 1mg each week and I have to go back to see her next week.

[DorsetLady PMRGCAuk volunteer in reply to Only45]

GP sounds most sensible - but if it is PMR then a starting dose of 5mg may not give spectacular results…usual dose for suspected/diagnosed PMR is 15mg..

Guess you have to see, please keep us informed.

[Only45 in reply to DorsetLady]

I think you are right because when I was on 15mg after 2 weeks I felt a little bit better, I then went to 10mg for 2 weeks but by the time I went down to 5mg I felt like I was starting to go down hill again.

[PMRpro Ambassador]

Time you found a rheumy who knows what PMR is because apparently they don't. PMR does not cause red, hot, swollen joints - then it would be an inflammatory arthritis and polymyalgia rheumatica is what it says it is, a soft tissue rheumatic disorder. It is more common in over 50s but the top PMR doctor in the UK says she has several patients in their 40s.

Did you see those rheumies on the NHS?

[Only45 in reply to PMRpro]

She actually quoted in her letter that there were no symptoms or clinical findings to suggest an underlying inflammatory rheumatic disorder. Even though the blood tests still show quite a bit of inflammation.

[Only45 in reply to PMRpro]

yes I saw them on NHS

[PMRpro Ambassador in reply to Only45]

And to be honest - the concept that it isn't PMR (for whatever reason) but t then choose SWEET SYNDROME of all things is hilarious - it is a rare syndrome, rarer I'd suggest than it being PMR at your age.

But it is pointless your GP sending you back to that rheumy or anyone closely associated with them as they are likely to double down on the opinion.

[Only45 in reply to PMRpro]

Thanks PMRpro I was thinking the same, I am even considering going private now.

[PMRpro Ambassador in reply to Only45]

Before you do - ask here, You can also get strange ideas from private consultations! Where in the UK are you?

[Only45]

I am in Gretna Green which is South West Scotland but it is only 20 mins from Carlisle which is in England.