Looking for name of rhumotologist

[Azanewby]

I am on a waiting list for a rhumotologist referral and have been told it's a 40 week waiting time in my area. Can you please give me the name of one I have heard mention on this forum in churtsey.

[DorsetLady PMRGCAuk volunteer]

Prof Rod Hughes in at Chertsey - always worth trying -

topdoctors.co.uk/doctor/rod...

[Azanewby in reply to DorsetLady]

Thank you for that. First my GP said it was 2 or 3 months waiting list I thought I have put up with the pain for this long I can wait a little longer. When I I asked for an update recently was told it's a 40 week NHS waiting time for a rhumotologist. So I am looking into a private consultation and I remember a consultant being mentioned in this forum in Churtsey.

[Perigrina in reply to Azanewby]

My GP diagnosed PMR and started medication within 4 days of my initial contact (including the completion and analysis of blood tests). He advised that he would only refer me to a rheumatologist if the Pred did not work, I had adverse effects or could not taper (as an aside: I welcome this, NHS resources are so severly stretched I think they need to be used judiciously). I'm not suggesting a rheumatologist is not advisable for you but it may be that your GP can (and should) be able to deal with this?

[PMRpro Ambassador in reply to Perigrina]

They should - but increasing numbers are unwilling to do so. No idea why.

[Azanewby in reply to Perigrina]

I have been on prednisolone for liver issues. Now the gastro specialist wants me to reduce the dose that's when all the pain started. So I now take 15mg of Pred and 6 paracetamol but I am still in a lot of pain. I have all the symptoms of PMR and because I m already on Prednisolone the blood tests will not show what is going on. This is why I need a diagnosis by a rhumotologist.

[DorsetLady PMRGCAuk volunteer in reply to Perigrina]

Many GPs can manage PMR - unless the patients has other significant issues when it might be sensible for a Rheumy to be involved.

[piglette]

Is that a 40 week wait for NHS or for a private appointment?

[Azanewby in reply to piglette]

Hi that's a 40 week waiting list at New cross hospital on the NHS

[piglette in reply to Azanewby]

Ah I see you are happy to go privately as I imagine the waiting times on the NHS for Prof Rod Hughes are probably pretty long too.

[Azanewby in reply to piglette]

Hi professor Hughes I will see privately if I can I am looking into funding and a copy of referral letter from GP so that it may be funded by Benenden which I pay monthly to. I will see if Benenden will allow me to see him as they have their own list of consultants they want you to use.

[piglette in reply to Azanewby]

Good luck with getting funding. I do hope Benenden help you.

[Azanewby in reply to piglette]

Thank you I will update on my journey to being diagnosed. So grateful for everyone's help. Brilliant forum. At this time when NHS is not always there for the answers.

[Perigrina]

I have seen the replies to your (Azanewby's) post and mine re my GP's prompt and good response. I want to cry! I cannot imagine sustaining the pain of PMR for 40 weeks for lack of a specialist appointment. My thoughts are with you. And a hug. I am sorry I have nothing else to offer.

[PMRpro Ambassador in reply to Perigrina]

I had PMR symptoms for 5 years before getting a prescription of pred. The GP couldn't recognise PMR without raised markers - even the rheumy was not convinced but gave me a course of pred to make a business trip to the USA more comfortable. He was convinced it was an inflammatory arthritis - and wouldn't listen to my report of 80% or so relief in 6 hours, very PMR-ish. However, a different GP was convinced enough when told that and that the pain returned in 6 hours after missing the first 5mg dose at the end of the course. It does pay to shop around every doctor in the practice - my own fault. I should have known better but I had believed in the value of continuity of care.

[Sweetbriars in reply to PMRpro]

Oh my goodness I can’t imagine ☹️ I had it for a year and could barely cope with that. Ironically it was my Physio who diagnosed it !!she said I must insist on the 2 blood test I am so grateful to her as I just thought I was being a wimp recovering from carpal tunnel !

[DorsetLady PMRGCAuk volunteer in reply to Perigrina]

You want to try the best part of 18 months with undiagnosed GCA pains...or rather - you don't !😲

[PMRpro Ambassador in reply to DorsetLady]

Especially when it doesn't end well ...

[KASHMIRI1 in reply to DorsetLady]

With you on that one DL

[Sweetbriars]

Once my GP had my blood test results she prescribed pred it all happened within a week. Within 2 days of starting the pred the acute pain had subsided ! She said no need for a consultant but I said I’d like one - a few days later a message popped up on the NHs app asking me to choose a hospital waiting times were 20 weeks and 14 weeks so I chose the 14 week wait time. I got an appt in 5 weeks! The consultant didn’t really add anything to what the GP had said and what I’d read about. I was also considering using prof Rod I looked him up and he does a very helpful presentation on PMR. As I’d paid out nearly £10000 for private Capal tunnel surgery before diagnosis I really couldn’t afford any more private treatment. Ironically having been told carpal tunnel surgery would be a 10 month wait my appt came through on 4 months just after I’d had my first hand done ! Good luck woth your treatment