Rheumatology appointment

[chess430]

Had my first appointment with rheumatologist on Saturday. I have been taking 15mg of prednisolone since 11th May for suspected PMR - it helped enormously with the symptoms but I am still suffering with pain and stiffness in the mornings and some pain up my neck into my ears which is why the GP referred me. I came away feeling very downhearted. He said my symptoms were more like fibromyalgia (they're not) and asked me if I was depressed (I'm not). He said my inflammation levels weren't that high.

He has done some more bloods and has asked for an MRI of neck as I have bilateral severe facet arthropathy in my lower spine.

Not a great experience...

[SheffieldJane]

...and of course your bloods will come back normal because of the Pred and his opinion will be vindicated. I was told that I had fibromyalgia during my first consultation with my first Rheumatologist. It really didn’t seem to fit. Fortunately I spoke to people on here and PMRPro recommended a Rheumatologist in the next town. She is a leader in her field and really knows her stuff, she properly listens and is very thorough. I soon found myself with a correct diagnosis and 20 mgs of Pred. I also took part in a research project which I would recommend if you get the chance. I needed a good Rheumatologist, my condition progressed to GCA and Large Cell Vasculitis, she also made the case for Actemra as 4 years of Pred had led to high blood sugar and hypertension. My GP was a bit reluctant, initially, to refer me as my hometown Rheumie “was perfectly good” but I persisted. Needless to say Fibromyalgia has never been mentioned again. I have felt that I am in excellent hands despite the Pandemic. Of course you feel depressed, you are in pain and being misunderstood. I was ecstatic when I finally got a correct diagnosis, daft but true. If you let us know your region we may have a recommendation that we can make. We have developed a roll of honour over the years.

[chess430 in reply to SheffieldJane]

Thank you. I’m in Nottinghamshire but have the flexibility to travel East Midlands wide. Any and all advice greatly appreciated

[PMRpro Ambassador]

The morning stiffness and pain until the daily dose of pred kicks in is absolutely normal for most people so that isn't a sign it is fibro rather than PMR - and pred would NOT work at all for fibro. Shame your GP lost their confidence.

healthline.com/health/stern...

medicalnewstoday.com/articl...

Do either of these links rings bells? That could be causing the neck pain and one cause of it is myofascial pain syndrome which is really also often part of PMR. If so - that would account for the neck pain

If it were me I'd ask if the GP will talk to you at length (I know, hope springs eternal) and take over the management while you look for a better rheumy. Put up a new post asking for recommendations - I'm assuming you could go private if necessary?

[chess430 in reply to PMRpro]

Thanks for the advice. Will do

[Nosmell]

I do hope you’re able to get some pail relief soon. 15mg of Prednisolone worked almost immediately for my PMR - two years ago, but it took a while for my GP to refer me to a rheumatologist, for a final diagnosis. I’m on 4mg steroids now, but the dose has gone up and down - PMR is very determined. Do take care.

[Bncc]

I was asked to comment by PMRPro who seems very knowledgeable. I can’t really help. A year ago my stiffness was very bad but overnight 20mg of pred cleared most of it away; I felt a new man. A year later a am on 5mg and no sign of the stiffness. All this done via phone consultations with four GP’s! Good luck.

[DavidMF]

I had PMR confirmed nearly 7 years ago after three months of investigation. I found out the problem after talking to a local care manager. My doctor thought it might be as I was now on so many painkillers, but first took a blood test, two days later it was confirmed CRP & ESR at 69/70. I was given 15mgs of Pred. this worked after 5 hours, I was relieved, following day I went on holiday for two weeks. Though I was so much better, I was still in pain Hips,Neck & shoulders, couldn't swim. On return the doctor upped the dose to 30megs. Total relief, over the next three weeks I cut back as advised but at struggled at 17megs. I then You-You'd slowly getting down to around 12mgs. All the advice & help from HE has been so greatly received. I'm now at 4mgs, thinking about the next drop of 0.5mg. Hope this helps.

[Countybowler]

Hi.Have had three private consultations with Rheumatologist.Was originally diagnosed with PMR at end of March and given 15mg of Prednisolone but on my 2nd visit in mid AprilHe told me inflammation markers had dropped and thought my symptoms were due to a bad viral infection at end of last year.I was advised to reduce Prednisolone to 10mg and now on 5mg until next week..Felt better on 15mg & stiffness in neck has got worse since reducing steroid.

Am also seeing private physio who informs me I am showing symptoms of ankylosing spondylitis due to significant thoracic kyphosis & hypomobility & has written to my GP suggesting a thoracic x-Ray & blood test for HLA-B27.

You will get knocked back but don’t give up and good luck.

[PMRpro Ambassador in reply to Countybowler]

Er - of COURSE your markers went down. You were on pred - that's what it is for! It is possible to have kyphosis and hyppomobility without signs of AS - on the other hand, there are better drugs for it