Good PMR specialist in Bristol/WestonSM?

[Lyra42]

GP diagnosed me with PMR in May 2022. I had difficulties reducing below 18mg so she referred me to a consultant at Bristol Royal Infirmary. He is very kind and sympathetic but refuses to confirm the diagnosis of PMR. He says I am too young - I’m 56 - and he’s run every test in the book on me (MRI, PET, chest x-ray, ultrasound) and all negative ( though I was sure they would be, given that I was on such a high dose of steroids.)

I’m grateful that he listens to me and that I’ve had all the tests to make sure it’s nothing else - BUT, I seem to know more about PMR than he does from reading this excellent forum and the various academic papers.

I am convinced it is PMR - all my pain is across back of shoulders, down arms to elbows, hips and knees. And most tellingly, completely bilateral.

He didn’t even know about the paper written by the BRI team (Quick & Kirwan, 2012)

He also put me on Etoricoxib last year that caused vaginal bleeding and I had to go through the whole womb cancer check drama for them to thankfully conclude that it had been caused by the Etoricoxib.

I thought I was on the path to recovery this summer. Managed to reduce to 11mg, the fatigue disappeared and I had a lovely time walking miles (on the flat, can’t do inclines) every day. But then my 19 year old son was diagnosed with Addison’s Disease at the beginning of Sept and I think the emotional stress has caused me to have a massive flare - had to go back to 18mg over last couple of weeks

Before my recovery in May, the consultant wanted me to go onto Methotrexate - something I really don’t want to do. I am fortunate in that the side effects of Pred don’t bother me too much. The side effects of Methotrexate sound horrible.

I’m seeing my GP next week and, if anyone knows a PMR expert in the Bristol or WSM area, I was going to ask her if I could be referred for a second opinion.

Thank you for all you do x

[piglette]

If your GP thinks you have PMR and is prescribing steroids why are you needing a rheumatologist, is it because of your age? The majority of people only see their GP.

[Lyra42 in reply to piglette]

I think she was worried that I couldn’t reduce the Pred

[piglette in reply to Lyra42]

It may be she was not that conversant with PMR!! Mind you I have had rheumatologists who are not that impressive either.

[Hollybee21]

I have been taking Methotrexate by Metoject pen for over 12 months and I am now down to 4.5 mg of Pred without any side effects. Have had PMR for over 14 years and this is the first time I have ever been able to get below 10 mgs. Tried Methotrexate by tablet but had stomach problems but by injection it has been a breeze. Lucky with my Rheumy who has been happy for me to use the DSNS method.

[Alchemy8]

I had a PET scan this time last year and the rheumatologist (RUH Bath) confirmed inflammation in the usual PMR locations. It might have been that your steroids had cleared the inflammation so nothing showed up (they can ask you to drop the dose if it is high before the scan). As for a referral you could ask for the National Centre for Rheumatic Diseases at RUH.

[Miserypants]

I go to Weston Hospital Rhummy department. I have had PMR/GCA for 7 years and now on 4.5mg Pred.

[Viveka]

Bristol used to be a centre for excellence because the staff used to work together, hence the report you refer to. The leader in this left and they now operate like in most hospitals - as individuals. I think Pro told me this a couple of years ago. I consulted Dr Gunwardena privately about GCA - he was very nice - he followed the national guidance on GCA like my doctors in Somerset. No idea how he would be on PMR.

If you are able to travel for the initial consultation, the recommendation would be Rod Hughes in Chertsey. As you probably know, lots of us are helped by Rod. After the initial meeting, consultations are by phone.

[Poshcards]

you could try the rheumatology hospital at Royal United hospital in Bath x

[Galore]

Hi I started on 40 mg of pred just over a year ago and also prescribed Methotrexate. I've really had no side effects and now down to 1 mg pred. Have call from Rheomo soon so will be interesting to see what she thinks. I'm with Torbay hospital and she's been excellent. Good luck with sorting out your problems.

[PMRpro Ambassador]

I doubt many of those test results were of any meaning at all if you were on 11mg pred. I back the concept of a day-trip to Chertsey!

[Lyra42 in reply to PMRpro]

That’s what I thought - what a waste of money! Thanks