PMR, blood tests,when to seek a rheumatologist, TMJ

[ChrissieHW]

Hello, I seem to be having a bit of a bumpy ride since diagnosis of PMR and I’ve lost confidence in my current GP. Diagnosis in Feb ‘23 came from a young locum who seemed really switched on but sadly she’s no longer there. So, I’ve made a decision to pay to see a private rheumatologist at the Nuffield in Leamington Spa . Current GP monitoring is over the phone, since April, and having started on 15mgs in Feb I’m to let my GP know when I’m down to 7mgs. The bumpy ride I’ve mentioned in the title to this thread includes double vision for a few weeks ( thoroughly checked out by opticians incl 3D scan and under care of eye clinic at Coventry hospital, all ok, corrective prism has helped), diagnosis of TMJ by the hospital and dentist ( painful jaw and head but not temples, now have a mouth guard), weight loss ( about 8 kilos) and lack of appetite - and from mid August when I had started using DSNS regime and was tapering from 9 to 8, I developed a painful shoulder( swollen ) and arm , pain generally one sided but other arm starts to hurt if I swap. I don’t know if I’ve just over done it and it’s a flare but I’m treating it as such and am about to reduce from 14 to 12, then 10, and any further reductions will be no more than 0.5. Apologies for the long preamble but I wanted to know if I should have had any more blood tests since diagnosis early Feb ? My surgery says not. Also , is there a link between PMR and TMJ (I’m having a very mild episode of jaw pain eg when eating apple and slight bruising)? And finally at what stage do other folk see a Rheumatologist? Again apologies for a ramble but my confidence in my GP is somewhat diminished since being told that sick day rules didn’t apply to me because I don’t have Addisons Disease, “ carry on tapering”……….!!! Many many thanks , Christine

[PMRpro Ambassador]

"My surgery says not"

Lazy lot! And IMHO, WRONG!

Ideal is the inflammatory markers before every reduction step to see that the last one didn't allow a flare to start up. Flares don't jump up and down shouting they are on their way. But you need checks when on pred every few months, every 6 months at the absolute outside, at the start until you and your doctor see the pattern in YOUR PMR, No two patients are the same.

Really - you don't have Addison's disease? It is classed as Addisons secondary to long term steroid use. Chump!

[ChrissieHW in reply to PMRpro]

Many thanks PMRpro , I think “ chump “ is a very polite word to use in the circumstances….. !!

[PMRpro Ambassador in reply to ChrissieHW]

I thought so too!!!!

[LindaB-66 in reply to PMRpro]

I’m 7 years into this PMR journey and I think I’ve had about 4 blood tests! I gave up with trying to go to see GP and only saw a Rheumatologist once a year. Eventually got one who agreed with me that the slowly slowly cutdown was correct. I told him about this site and how you guys guided me through this illness. I’m on 2mgs now and he has signed me off his list as “you know what you’re doing” which is fine with me as all my advice came from here anyway so thanks to the Ambassadors on this site - you’ve been there for me throughout!!

[piglette]

The majority of people with PMR never see a rheumatologist. People tend to go if they have problem symptoms. In my case I went because the GP could not diagnose PMR! In fact of the rheumatologists I have seen, two NHS and two private there was only one I would recommend and she was NHS.

[ChrissieHW in reply to piglette]

Many thanks Piglette, I guess I kind of knew about the necessity or not of seeing a rheumatologist for PMR. At least if the specialist’s follow up letter could give some advice for my GP to follow in the future that will be worth the money spent . Thank you again !

[piglette in reply to ChrissieHW]

I think that will leave your mind at rest. If you get a good rheumatologist that will be fantastic.

[ChrissieHW]

🤞🤞

[Charlie1boy]

Hi,

I was diagnosed in Leamington with pmr nearly eight years ago, and haven’t had to be referred to a rheumatologist. However, a fellow sufferer, with whom I used to meet up did tell me that he did see a rheumatologist at the Nuffield, and he thought he was ok. I think, too, that he was quite close to retirement, but, if you’d like me to try to find out his name, I will do so.

I’ve experienced no issues with my GP, but I was left to manage my own condition,, which I was able to do with the help of this Forum. Also, though I had pmr for nearly eight years, it was relatively straightforward.

Good luck.

[ChrissieHW in reply to Charlie1boy]

Hello and thank you so much for your reply. I think I know the identity of the Rheumatologist you refer to as he diagnosed a friend’s rheumatoid arthritis and also spoke to her about PMR, a very pleasant and knowledgeable chap. The rheumatologist I’ve picked out has PMR as one of her specialties, so here’s hoping …. And yes, the advice and support from this forum is brilliant! So glad as well that your PMR journey has finished, thank you again .

[Smithie49 in reply to ChrissieHW]

Ģood luck Chrissie. I saw a Mrs Ionescu at Warick hospital under NHS. She diagnosed atypical PMR when the GPS wouldn't as my blood markers were normal. I don't know if she also does private work.

[ChrissieHW in reply to Smithie49]

Thank you for the info ! I don’t have private insurance but hope a one off with this specialist , with PMR listed , comes up with the goods particularly for my GP’s benefit . Thank you again, this forum is wonderful and so informative and supportive 👍

[Smithie49 in reply to ChrissieHW]

Oh, my PMR journey is still well underway unfortunately but I'm lucky I can function if a bit stiffly like some un-oiled robot!!!!! As you say, this forum has been a godsend

[ChrissieHW in reply to Smithie49]

Good luck with your own journey! Christine

[Charlie1boy in reply to ChrissieHW]

The rheumatologist I was referring to was a male, and I guess he has probably retired.

I do hope all goes well for you with your consultation, and you manage to get the information and help that you need. My experience tells me that you will need loads and loads of patience with pmr, and will need to keep reminding yourself to take things easy. Although I’m sure you wish, like all of us, to be off steroids, unfortunately pmr has a mind of its own. Half mg reductions is certainly a good area, and was the process I adopted, and I never reduced if I was aware of any symptoms. It was amazing to me, and others, how much difference a half mg can make!

Good luck.

Paddy

[ChrissieHW in reply to Charlie1boy]

Thank you again for your help and kind words, much appreciated! Christine

[Zebedee44]

Hi ChrissieHW, I am a Chrissie too. I had a several blood tests at the start and it was the very high inflammatory markers that finally confirmed the diagnosis after many months of increasing disability. Once I was on the tapering programme I barely had any blood tests, just went by symptoms. Poor advice from my GP led me to taper too fast and since then I have done it at my own pace, with advice and support from this forum.

I was never referred to a rheumatologist but paid to see one after two years and again this year after six years and an NHS Rheumy who declared that I probably never had PMR! Another chump!

I suffered a lot with jaw pain and finally saw a Maxillofacial consultant who gave me exercises to do and have just been fitted for a mouth guard which is helping. Random symptoms continue to give me cause for concern and I always refer to this forum for well informed support, although my current GP is very understanding and more often than not available on the phone if not f2f, for which I consider myself very lucky.

Hoping you get some peace of mind soon, best wishes, Chrissie aka Zebedee

[ChrissieHW in reply to Zebedee44]

Hi fellow Chrissie, thank you so much for your reply and for giving me some info about your own experiences. PMR is not an easy thing to contend with is it ! My dentist has made a soft mouth guard for me to wear at night / it’s actually very comforting and I’ve found some facial exercises to do - in private …..I’m also following my own tapering routine based on what I’ve learnt from this forum - invaluable ! I hope your own journey continues without too many hiccups, and likewise, best wishes, Chrissie HW