Saw new consultant on thursday, turns out this was a routine appt not the urgent one A and E were supposed to make after treating me for sepsis, this is the second urgent appt this hospital has "lost". I explained I needed to reduce pred because of the cararacts. So she asked me some vague symptom questions and homed in shoulders. Apparently my scalp is tender in the wrong place for GCA and my shoulders hurt in the wrong way for PMR SO I dont have either. She sent me for x-ray of shoulder and neck in spite of me saying gp had done same at easter. This morning i get appt for ultrasound of shoulders in a months time. On help for reducing pred steroid sparers only possible if markers are raised, do i have to make myself ill by reducing pred massively to convince her?
I told her I had consulted your very nice expert consultant and he said he thought it couldn't be anything other than GCA PMR, so she demanded to see a letter from him which i didn't have of course since most private consultants don't work for free and it hadn't occured to me that i would have to argue my case as if in court!
So it back to nice private rheumatologist but we can't afford expensive drugs.
Anyone know how to get GP to refer one to a different NHS Consultant?
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Cally55
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Sorry you've had to fight your corner again, just when we feel so unwell it's hard sometimes to take on specialists. I believe GPs can offer you services at other hospitals in your area if rheumatology isn't centralised in one alone.
I had a chest x-ray, hand and wrists x-rayed, knees x-rayed and so far had 2 dexa scans so it's a wonder I don't glow in the dark! I wish they trained Doctors to listen to their patients these days as well as read out of date text books.
Take care and I wish you every success with finding your ideal rheumatologist.
I think you can be referred to a named Rheumy anywhere within the UK under the NHS, but I’m sure others more knowledgeable will confirm or deny that. How long the wait would be though?
Thank you! Ah the waiting..... I don't understand how the NHS can ration consultant advice by waiting times but seems able to do endless largely pointless and duplicate tests because various hospital computer systems don't talk to each other. I think that if this GCA then its going to be a long haul!
Hi - have looked back on your posts but can't see what private Consultant you went to see. Just a few points really- 1. Your present Consultant said that she would not put you on a steroid sparer only if markers were raised. I am on a steroid sparer and my markers have never been raised. 2. Yes you can be referred to any Consultant, not just in your area. For instance I live in the Midlands and go to see Dr Rob Hughes in Surrey. 3. I initially went to see Rob Hughes privately and then asked to be referred to him on NHS. If you had confidence in your private appointment with your previous Consultant does he/ she take on NHS patients if so you could ask for NHS referral to this Consultant. All best wishes.
If you already have cataracts there is no real point in reducing the pred - it is far simpler to have the cataracts removed. "Steroid sparers" are not guaranteed to work anyway so you may not be able to reduce the pred any fster or further.
If you saw a good rheumy privately the chances are they do NHS work too - and your GP can refer to them. Often a good private doctor will add you to their NHS list if you wish. As someone has already said you can go anywhere - in England. That is not the case in the rest of the UK though.
I have been told that some surgeons won't operate if you are on a high dose of pred, I am still waiting for an appointment so I don't know what this one's rules are.
Mine just did when I gave him the name of a specific Rheumatologist that PMRPro recommended to me. He grumbled about the Sheffield one being perfectly good ( I'd seen him once and he mentioned the dreaded Fibromyalgia cop out) for the Symptoms that didn't quite fit. In the end the GP referred me to the Rheumatologist of my choice. I think we are supposed to be able to do that.
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