Hi there I am two and a half weeks into treatment with prednisolone and all seems ok. Still have painful shoulders and few aches and pains but vast improvement. My GP has referred me to a rheumatologist as I am 51 and just wanted a check. I am thinking of paying privately to speed up the process but there seems to be a mixed view on rheumatologists generally. Would welcome any advice on what they will add. Also if you as aware of any experts in the Cardiff/Newport area of South Wales area???
Any advice gratefully received
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JulieR2
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Not sure going privately really helps - it's an expensive process if you need follow-up or any scans that a GP can't request. They aren't necessarily any better just because you pay - they also work in the NHS.
A year ago, some of the Cardiff Rheumatologists have a 9 month Out Patient waiting list for non urgent cases and an 8 month waiting list for urgent Cases.
I started with a private rheumie as my GP did not have a clue and could not diagnose what I had got. I now have an NHS rheumie who also has not got much of a clue! The only real advantage of a private rheumie is that you do not have the waiting time of months to see them.
Rheumatologist are good at carrying out investigations to look for other possible causes of symptoms. I was diagnosed 5yr ago with Atypical polymyalgia after 6 months of tests ( atypical because I was only 46). 6 months ago I discovered my PMR symptoms were in fact due to a condition called Ankylosing Spondylitis, which in women of a certain age can present similar to polymyalgia, but the treatment is very different. I spent 5yrs on steroids but although they helped the pains I was becoming stiffer. I recently started biologic injections, 2 weeks ago, already the stiffness has improved immensely, and I can feel the old me slowly returning. So based on my experience I would say a rheumatology opinion would be good. I went through 3 Rheumys, the 3rd and best one was 300 miles away, but she was determined to solve the puzzle of my strange PMR and GCA symptoms. I can never thank her enough, if I remained locally I don't think they would ever have considered AS as a diagnosis. Good luck, but as PMRPRO says private is expensive and not always best. If your GP is currently treating you with Prednisolone, why the rush?, you will still have to taper off as you are now, even if diagnosis changes. I am down to 3.5mgs, 4 month after change in diagnosis. Take care
Doing well thanks. Rheumy says it takes 12 weeks to see full benefit. Stiffness better, still stiff after busy shift, I don't feel like I'm walking through treacle now. Seeing a rheumatology physio who is planning a program I can do safely at the gym as I'm so deconditioned, and there are certain exercises I absolutely have to avoid. Had a chest infection recently, and strained so many muscles coughing, as my ribs are fused to my spine, my chest doesn't expand. It has left me anxious about future chest infections. Hope you are doing well. I've managed to lose 21lbs of the weight gained from Pred and Pregabalin, starting to look more like my old self 😁. Take care x
I went to see a rheumatologist privately initially because my GP kept saying I had a virus, a rather long term virus!! The rheumie diagnosed PMR in about thirty seconds and gave me pred. In visits after that I was really just a cash cow, he would take my BP and dictate a letter to me GP. Then have a long conversation about UKIP!
Ditto, Piglette - the £300 I handed over has always seemed to be the best money I ever spent, since getting a diagnosis and a fistful of Pred took away the horrible uncertainty of not knowing why I'd become disabled, virtually overnight!
All follow-up has been via my GP - he is at least 'malleable' as regards dosage, DSNS, Dexascan etc - but conversations are somewhat stilted - 'hmmm', 'yes', 'I see'.......etc , no discussions on UKIP there!😀
Right - mustn't dally, just trying to make GP appointment now - phones permanently engaged so will get walking shoes on........
I paid to see a Rheumatologist privately to speed things up and was diagnosed and treated for osteoarthritis. No improvement. Cost £200. Had kept my already booked NHS appointment. PMR diagnosed and miraculous relief from steroids within 48 hours!!!
I know that this is not a common experience, though.
I found seeing a rheumatologist at the same stage as yourself a total waste of time! She did absolutely nothing apart from twisting my hip and muttering "Just wear and tear".
Val and Pete - I had a similar experience. The first rheumy I saw (a colleague of him indoors so you'd expect better) said it was all OA, she could "feel it". I assume she thought she discharged me - the next year I got a recall letter, turned up like a good girl and she was extremely rude to me. At least it was NHS and it hadn't cost me anything but the time - we lived a 5 min walk from the hospital.
Funny how no-one else has found any sign of OA anywhere - even using imaging that is a bit more accurate than twisting your hip. But it'll be that miracle drug pred that they try to tell us eliminates all pain...
IMHO a total waste of good money. I saw rheumatologist at first, like you, I hoped to speed recovery :). He did not have my notes, I was seen in Private hospital for approx. 15 mins for a charge of £250, paid direct into his bank account plus £45 extra for injection into my shoulder. Only to be told exactly what my GP had told me on my blood results. If you trust your GP, National Health forever....Good Luck
I saw a rheumatologist 4 months ago, and got a good examination, pinpointed that I was not sleeping deep enough, therefore body not prepared for the next day, and more steroids, also one or two other points, and wants to see me again in 4 months, and advising me to stay on the dose I have been on for past 6mths (7mg)
I await some change taking place hopefully soon. Conclusion I am pleased I saw him
Is the rheumie suggesting you should reduce from 7mg if you feel OK, before you see them again? It seems rather silly to stay on 7mg for ten months if you do not have to.
Also how on earth do they know you are not sleeping deep enough without a diagnostic test? I know that as you get older that one tends not to sleep as deeply, but that is true of us all.
Your rheumie sounds like they have a good bedside manner on the other hand.
Hi thanks for reply, it looks as though I did not make myself clear, apologies, regarding my sleep, his diagnosis was based on my info, and as a result suggested I needed to sleep better, therefore preparing me for the next day. He prescribed a drug called amitripylene. I consulted with my GP who suggested I take half a tablet to see how I go, so far very little has changed.
As regards the preds I was advised to stay on them 7mg because I am still suffering from PMR. (I am, and was not ok)
Yes - but if 7mg isn't quite managing the PMR then you won't sleep well. I can say that from bitter experience! So instead of adding another drug that may or may not work (and it sounds as if it isn't) why not add a bit more pred first of all and see if THAT helps you rest better?
Hi Welsh Pensioner, I read somewhere that amitryptoline was the most prescribed drug in UK. I don't know if that is correct. It is basically an anti depressant, but now seems to be used for pain as well. It is pretty useless for PMR, but might help you sleep better I suppose. As PMRPro says upping the pred a bit would probably be much more sensible.
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