Ok I’ve gone and done it. I’ve booked a private consultation with Professor Rod Hughes which requires a trip to Chertsey from Bristol later this month.
I’m hoping I can get some clear direction on what my options are and see if there is anything else going besides PMR.
Hope things go well. You have got the M4 which will make your trip less cumbersome.
Good luck - sure he give some sensible comments..
I see him myself and think he is one of the Rheumatologists who does know about PMR etc. , so will hopefully help you to find out where you are at.
All the best for a helpful visit. He isn't a magician but what you are guaranteed is a fair hearing and sensible appraisal of the situation.
PMR Pro, I had a telephone consultation with Dr Hughes just over a year ago about this topic. May I contact you by private message first, to send you a copy of his letter with his 2 suggestions? if you agree it is OK to post it on this thread, I'll do so for others to read with your approval. I don't know how to private message you.
Click/tap on my name or avatar and my profile page comes up. To the top right you will see a blue box with Chat. Click on that and it opens a page for a Chat - we've chatted before so the last chat will appear.
What did you think of the letter? Thanks
Well the grammar was terrible, made reading it difficult. Some of it was clinically ambiguous. I’m due to see my GP this week about it and will have to explain a few things. It was even addressed to a Doctor (at my surgery) that I used to see in Truro, I’m now in Bristol, and he retired a few years ago!
The face to face appointment was excellent but I have to say I was disappointed in the letter. I do wonder why you ask, did you have a similar experience?
I’m not sure if I replied to the right person but I was thinking of going to see Mr Hughes.
I wouldn’t hestitate to see professor Hughes again.
Good luck! I am having to do similar in the North West as I cannot get under the care of the NHS as yet and I have been waiting since February 😔
I really hope you get some answers it’s been a long old road. Let us know 🤞
I have only heard very positive things about him. No doubt you have watched his two You Tubes already. If not try to.
I had a mind to see him privately, but realised that we get more up to date information here. If you could get scan done under him, to see where the inflammation is it might be interesting but expensive, ( suggested on the American You Tube a few days back). You could ask about the option of steroid sparing treatments if applicable. My GP had no knowledge of them but at least he was honest.
You could also ask him about any new research going on into PMR.
All the best
Hi Motida and thanks for your reply. I’ve had two MRI scans and no abnormalities were shown. As for steroid sparing drugs I’ve had all that they offer with no help. I’m about ten years in on this PMR journey which has been pretty much up and down, more down!
I’m certainly not expecting any miracle cures but I’m hoping he’ll be able to give me to some clarity.
I doubt we are any more uptodate than he is - mainly because he has access to ALL the publications through his hospital whereas we don't.
GPs aren't able to use any of the steroid-sparers themselves, they can only renew prescriptions, they must be initiated by a rheumatologistm so few of them know much about their use, just that they are used.
Diagnosis going on Low-dose methotrexate
Private testing 
Going downhill or is it winter?
Going higher than original 15mg to control a flare?
