Anyone have experience of Polymyalgia Rheumatica?

[italy321]

Hi all, I am still going through the diagnosis process for Vasculitis but after reading the route map kindly provided by someone via a link on this website Polymyalgia Rheumatica seems to be a close match to what I am feeling.

I just wondered what people experience and how people feel who have been diagnosed with this.

The picture on the route map of the inflammation of bursa resonates with my current joint/muscle pain. I'm on the 6th week of suffering this pain, which came from nowhere i.e. simply woke up with a slight dull pain which gradually became worse each day. In my previous question/post I mentioned I have suffered from the rashes/swelling etc from March but this is a more recent possible symptom.

It's pain in the shoulder blade however it is also under my armpit and round to the front of my chest, constant pain at all times. In a way I've become used to it but it is limiting my activities. My neck can not touch my chest, well I can't move it down at all. Left to right is fine. At night I have pains around my abdomen and hips and so sleeping - well I struggle put it that way.

I'm seeing a McTimoney chiropractor on Friday as maybe it is unrelated and simply a mis-alignment somewhere but my gut is telling me it's something a little more complex, it seems to affect my breathing i.e. I struggle to take deep breaths. By the way I'm 34 years old and so the route map states this is rare for anyone under 50 so I may be way off!

Welcome people's views..

[bowler]

Have you tried the " pmrgcauk" site, healthunlocked, ?

[Chris-Bromsgrove]

My mother developed PMR aged 85. She suffered pain around her abdomen and hips and also in the shoulders I think. There were no rashes but she was severely fatigued. It was brought under control with prednisolone and she is now on a low maintenance dose.

Bowler's suggestion seems a good one to get more information.

Hope this helps

Chris

[JontyW]

Just to let you know that I have been recently diagnosed with CSS (now renamed EGPA) Churg Strauss Syndrome, and have no knowledge or experience of PMR, but am just providing the conclusions from an analysis I've done on matching your symptoms to PMR and CSS ...

Checking through the symptoms you have given, and then seeing how they match the published data for PMR, there are a few areas where there is not a good match, thus suggesting it might be a different type of vasculitis ....

1) "PMR mainly affects people over the age of 65. It is rare in people under 50". You are age 34, so not a good match. However CSS predominantly affects patients aged 30-45, so that is a very strong match!!!

2) There is no mention of spots or skin rashes under PMR symptoms

3) From reading your original posting on 17 June "Does this sound like vasculitis?"

vasculitis-uk.healthunlocke...

... BerkshireBird suggested the symptoms were very similar to her condition which is CSS Churg Strauss Syndrome

4) In the posting above you mention .. " it seems to affect my breathing i.e. I struggle to take deep breaths". In PMR symptoms I cannot see any reference to breathlessness. But in CSS that is definitely a key symptom, in my experience.

5) You mention in previous posting .. "the last one affected both my palms with huge bumps in the centre", and BerkshireBird confirmed she experienced that with CSS, I also have slight lumps on my palms, although not very large.

Based on the above analysis, you seem to have a good match for CSS .. see full symptom list from Mayo Clinic mayoclinic.com/health/churg... ...

... BUT you do not mention anything about Asthma or nasal polyps or sinus issues which are key indicators for CSS. So have you had any issues with these in the past or present?

I hope this helps and I suggest you look carefully through the data on CSS, and push to get a vasculitis 'specialist' involved as soon as possible.

JontyW

[ken13]

Hi there I developed pmr when I was 45. I thought I had a bad back to start with but went to gp who did some tests and with 2 days It was confirmed pmr . Straight onto 45mg of prednisone and maintained that does then gradually reduced the steroids to zero. It look a year though.however I developed vasculitis 10 year later ..mpa and for the last 4 years have been on steroids now in remission on 5mg prednisone daily with an annual dose of rutiximab

[italy321]

Thankyou for all replies in particular JontyW for your excellent analysis. CSS is looking a likely candidate. I used to suffer with asthma as a young boy but this cleared in my early twenties. I have always suffered with hayfever however and most days seem to have a sniffly or partially blocked nose. Never had polyps though.

I've recently received a copy of the letter my dermatologist sent to a consultant renal physician at Royal Derby hospital. Mentions that recent tests have revealed normal blood pressure, urinalysis, blood count, ESR, complement levels and negative ANA. He simply welcomes advice from the renal physician on further management. Hopefully this will move forward quicker than it has done over the past few months but at least it does seem to be being taken seriously.