Private rheumatologist uk

[Marko666]

Hi , I have no help from rheumatology now for some time and GP not helpful at all just agrees with me can anybody recommend a private rheumatologist in Cambridgeshire area please , I can't get down on my pred now for 4 yrs , recently got down to 10mg but just got worse with neck and can't walk back up to 12 now symptoms eased off last time I see rheumatologist thinks I have fibromalgier as well but was ages ago so I asked my doc for gabapentin as well but no change , I need some professional help kind regards Mark.

[DorsetLady PMRGCAuk volunteer]

Hi

Last time you posted you were still working -4 days a week in a physical job -is that still the situation?

You did ask about Leflunomide was that any help? I’m guessing not as you have increased Pred again.

Why does Rheumy think fibromyalgia-is it just because you are struggling?

Sorry to keep asking questions.. but might help us to help you,

Hopefully you can get some replies re Rheumy -but our “go to” person is Prof Rod Hughes if that’s a possibility for you. Chertsey, Surrey

ROD HUGHES

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

He likes to see people for first visit, then it's by phone if needed. Best way is to contact his secretary Jody on 020 7031 3403

[Marko666 in reply to DorsetLady]

Hi DorsetLady, thanks for the reply , no unable to work it's mainly pain deep in my buttocks and my neck I really struggle to walk and at night my back don't sleep much as I take pred about 11pm otherwise I'm in agony in bed and by morning I have a chance to be able to move with a limp , I stopped leflunomide as had no obvious effect , rhumy told me to taper drastically 3mg every 2 weeks for the month so when I see him I would be on 9mg but appointment was cancelled anyway he said I had fibromalgier so get off pred ? I told him u would be in agony I tried but sure enough couldn't do it , going to chase docs to get another rhumy appointment as its been a couple of months now .

[PMRpro Ambassador in reply to Marko666]

If pred works well - it ain't fibro!

It sounds like PMR with add-ons but with the night time pain and your age they should be checking for other things. And I would say make the effort to go to Rod Hughes.

[Marko666 in reply to PMRpro]

Thankyou pmrpro, you have just answered one of the things that go through my mind "if pred works so well it ain't fibro" thankyou it really does work so well , thankyou both I shall be getting in touch with Rod Hughes much appreciated and thanks Dorsetlady for the tel number xx

[DorsetLady PMRGCAuk volunteer in reply to Marko666]

Please let us know how things go with RH if you get appointment.

[Marko666 in reply to DorsetLady]

I certainty will thankyou .

[PMRpro Ambassador in reply to Marko666]

I noticed that in her PMRGCA lecture Sarah Mackie said she is unhappy about the trend to one-off private consultations because there isn't the continuity of care. Which unfortunately just goes to show she is very out of touch with reality in many places. If you are being ignored by your local NHS doctors or they have daft ideas - you need an input from someone like Rod and a good GP. Because a good GP beats a poor rheumy hands down.

[Marko666 in reply to PMRpro]

Thanks pmrpro, I shall be getting in touch with Rod tomorrow thankyou for your time I appreciate it 🙏