I've just had my appointment at our local hospital postponed for another 7 weeks. It was a telephone consultation with the nice Rheumatologist I saw originally (a year ago) However, I am anxious to see/speak to someone more quickly but there are no consultants here that see patients privately.
Can anyone suggest a specialist in another part of Scotland that sees patients privately please?
Hi, if you are only thinking of talking to a private consultant for a one-off consultation to get a quick advice/opinion, I assume that at the moment, you could see almost anyone as they will all offer virtual or telephone appointments.
Try contacting the Scottish charity helpline - they may be able to direct you to a privately practising rheumy in Scotland.
However - beware, simply being able to speak to someone quickly may not be the be all and end all. Someone without any access to your notes may be floundering.
is it anything we may be able to help you with?
Thank you very much for responses. I take your point about lack of notes and may re-think this. I had been looking forward to the consultation and I suppose the idea of waiting another seven weeks seemed unacceptable. I started on 20mg Pred last May and got down to 5mg in August and there I have stuck. I have no pain at all but the overwhelming fatigue has really changed my life completely. It is like dragging lead around with me all day. Mornings are worst and afternoons a little better but the strange thing is that by evening I feel a different person - almost normal! I take Pred at breakfast time and have wondered about changing that time but understand that mornings seem to be recommended. My Rheumy has never been sure if I had PMR or Late Onset RA. but what is not in doubt is that I have tenosynovitis of left wrist (that is where it started, then moved to shoulders etc.) Just feeling a bit low I suppose - sorry.
No apology needed. Happens to everybody at some point and it does make you feel awful.
To get from 20 in May to 5mg in August is amazingly fast. I would think that the overwhelming fatigue is either due to poor adrenal function even after so short a time on pred or the underlying autoimmune disorder that causes the symptoms we call PMR - or even a combination of both.
Were you less fatigued at 6mg? The other thing I would try if it were me - try at least and see if it worked - is to take the pred or at least some of it before bed and see if that improves your mornings. If it doesn't you can go back easily enough. Mornings are recommended - but if it would get you over this phase. What sort of pred are you on? Is it the enteric coated form (red 5mg tablets, brown 2.5 and pale yellow 1mg)?
Thank you so much. This all makes sense. I was never on 6mg Pred - Consultant made me drop from 20 to 15 to 10 to 5 from May to Aug. which was very straightforward. I did have fatigue before but put it down to Methotraxate, which has been discontinued. I'm on Non-enteric Pred - 2.5mg are yellow and 1mg are white.. Would you recommend that I ask for the enteric coated form? (if they'll prescribe them) I am very lucky that pain has been so well controlled and it is such a relief to 'talk' to someone who understands! Think I'll give the evening plus morning suggestion a try.
They are crackers!!!! All the guidelines say the tapering should be 1mg per month at most below 10mg and the one thing everyone on this forum agrees is that you have to go slowly to identify the correct dose for YOU. Yes, I found methotrexate unbearable because of the fatigue and stopped very quickly. How long have you been off it? It was a few months before I felt really well again.
Some doctors are very reluctant to prescribe the e/c but they do have their uses,
Came off methotrexate mid November.
I'd have thought it would have been out of your system by now but maybe not.
I was actually wondering if I would try this, taking some of my pred at bedtime to see if it would help my horrid mornings. Would that approach make already just about nil adrenals worse or interfere with that end of things?
The endocrinologist doesn't seem to think there is anything to get worse does he? 
It would depend what time you took the nighttime dose. The trigger for production of cortisol by the adrenals is a low level of steroid in the blood at midnight. If you took the tablets just before or after midnight then it would have no effect as it takes at least an hour to get to its peak in the blood. The ideal time to take plain pred is 2am - in the system by the time it is needed at 4am but with the maximum time to get to zero in the blood before the next midnight. I'm on the expensive but effective version of pred sold as Lodotra/Rayos which you take at 10pm, releases at 2am. I never have a bad morning Well, in terms of PMR at least!
Ha ha you're right!! Made me laugh. He doesnt think they'll be back! Never know what to be doing, if i could judy improve that dreaded dead and sick feeling that just wont go away. Clutching at straws maybe!!
This site
privatehealth.co.uk/doctors...
lists 6, all in the central belt and Edinburgh.
finder.bupa.co.uk/Consultan...
tells you more about the Edinburgh one.
This
healthunlocked.com/nras/pos...
is from NRAS from 3 years ago - saying what I would have said, all the best ones work in the NHS only!!!
Thank you very much for much useful information which I'll keep by my side. Your consultant's point about 50% is now ingrained in my memory . We have moved house twice in last three years so there has been rather a lot of stress too.
Vasculitis guidelines support first-line *biologic therapies in certain patients (including GCA patients!) 
Treatment of patients by rheumatologist
Rheumatologist 
Advice on referral to Rheumatologist
gca patients that are on infusions
