Hello all!
Having only recently started on this journey, and already finding that the Drs don't always "get it" I am thinking ahead a bit to possibly exploring the private route.
I just wondered if anyone knew of a private consultant / specialist in PMR in the far NW of England UK? I'm in the northern part of the Lake District and would be prepared to travel maybe up to 100 miles, but would love to find something nearer.
Many thanks.
What are you hoping to get from a private consultant? Is the pred working OK or have you got problems? What sort of private consultant are you looking for?
Just a gentle warning…be seen 3 rheumies, and got nothing out of the appointments at all, except to learn that they think I haveAddisons disease and should get off steroids within 8 weeks, & not to care how sick that makes me. A good GP can be a better help. Not sure what you expect to gain from seeing a rheumy, tbh. Imho, unless you have other health problems )I was actually referred for OA & Hypermobility & Fibrimyalgia, as Ihave those, but PMR came up in each discussion). You may find you get better advice, & learn much more, by reading this forum, & asking questions, where needed. Just my personal observation!
"they think I haveAddisons disease and should get off steroids within 8 weeks, & not to care how sick that makes me"
Do they want to kill you? As rheumies, they should know it is SECONDARY adrenal insufficiency, not Addisons. And either way - steroids is the treatment!!!!!
Yeah, I realise that, but he put he thinks I have Addisons in the follow-up letter after appointment!! Good job my GP is up to speed!! It was the way he paced the floor after I told him I got sick after going down from 4 to 3, and that’s when he said it doesn’t matter how sick I get I must just battle through it! I’m sitting on the floor at Bergerac airport. It’s so small I said I’d walk but now we have a delay and not enough chairs. One lady offered me her seat out of 39 plus people. They all heard me say I’m disabled and have a badly swollen ankle. They are all British! Only one hour delay and the floor isn’t too filthy!! S xx
Which is why I say - ALWAYS make use of airport assistance, at least when it goes pear-shaped YOU have a seat!!! Never ever admit you could walk - it never ends well.
I did. I booked it! But then the airport was so tiny I could limp it easily, & told the checkin clerk that I wouldn’t need if! But then there was a short delay & nobody would give up their seat to me! Then they kept us waiting outside on the runway side for ten minutes while they disembarked the arrival passengers. I sat on the runway steps. But my main problem is my dislocating ankle, nothing todo with PMR!! My foot was the size of a football by the time we left the plane, ha ha! They threw out the full rubbish bags, put in some fuel, & we were off! Fastest turnaround I’ve seen! It’s just an ankle, I hate it more when my wrist or thumbs dislocate, tbh! S x
ummmm, who are these people, that is a huge concern. Steroids are one of the treatment plans for Addison's anyway, plus you have been on steroids long enough to get adrenal issues... wow, that is scary
Isn't it?
Yes, it is very concerning. I have 12 ‘diseases’ and don’t need any more. Every time I try to reduce the steroids I get the symptoms of adrenal insufficiency and have to be very aware of it! I have a good go but the surgery has just stopped patients ability to email the Dr so my good route has been stopped! I need to find a new one!! S x
Have you tried writing to the GP you relate to. When I was first diagnosed and had medics firing at me from all angles I would write to my personal preference at my practice and update her and also ask a couple of questions or request a blood test. It might have taken a few days but she would always ring me back eventually. I used to take mine by hand and write her name on the envelope.
Thanks for this thought. If she doesn't phone early next week, I will do that.
I think CJDLSR thought this was aimed in that direction, but I can see it was too me. Thanks, no problem, I have ways & means to solve my problem. I have resorted to writing, at a couple of times,when the receptionists kept trying to get me to see another Dr…I would explain I suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Asthma, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration….but they’d just say it’s all on the screen. But I said it would waste their time, as I’d spend the whole ten minutes telling them a lot of history! I’m working on it! S x
Thanks for this Pixix. Since trying to get hold of the rheumy dept, I have heard that they are pretty useless!! I have been an "open case" with them for some years as I have long had "very" high markers for RA (which is in the family) but I've had no symptoms. I suppose I had hoped that they may have someone who was a bit of a specialist in PMR, but it looks as if that might have been wishful thinking!!! It seems all the specialists are on this forum!!
I’m sorry. I just don’t want you to waste your money. There are about 3 specialists that see recommended on this forum so depends where you live! My gp thinks I have sero negative RA, but I don’t want to take the medication that would come with diagnosis so have stopped chasing the referral now!!
Good point Pixix! Perhaps I should just take stock for a while and learn to live with where I'm at (so to speak). I live in north Cumbria. I guess there is plenty of time to take things further if I need to.
Your choice entirely! I didn’t go to a specialist about PMR at all…& wish it hadn’t been mentioned! A lot of people dont see a specialist, it’s managed at GP level, really. Once diagnosed, & taking steroids, them it’s matter of controlling the level of steroids. I’d rather be guided by PMRPro & DorsetLady any day, to be honest! It’s not a really complicated condition, & they know what’s what! Ask questions on here, & see how you go, perhaps? It’s your choice, you can go & see a private rheumatologist, if you wish!
As others have said, learn everything you can from the great people on this help group.
Then hit the so called experts with the facts.
So when they say they want you off steroids & you have Addison's....don't react, respond!
Answer with the facts then finish up with...." and you want me off steroids ???"
When they know they can't fob you off, their attitude should change & they should engage & explain if they think you are wrong.
While a little knowledge is a dangerous thing, any is better than none when it comes to our health & the times we are in.
This help group has a huge amount of knowledge and without the help of many, I would have been in the dark & would still not of had a clue what was going on or why i'm feeling the way I do. 🤪
Learning as much as I can has helped so very much.🙏
Thanks for all your comments. It's a good question "what do I want to get out of it?" I totally agree that this group, all the wealth of experience and knowledge here, is the best thing I could find, and I am far more confident of what I read here than what I'm hearing (or not) from the drs. However, I want to be able to give my Dr an "expert" professional, medical opinion and someone who could over-ride the GPs if they want to suggest a treatment plan I am not comfortable with. I know I am jumping the gun here, but just trying to be prepared if necessary.
I should be getting a phone-call from my GP this coming week, so I shouldn't really be pre-empting what will be said, but I know they don't agree with "yo-yo ing" between higher and lower doses. From what I've read here, I'd like to settle on a dose that works (ie, minimal pain and discomfort - don't seem to be there yet, nut that may be my fault!!) then, after (say) a month, start a very gradual tapering plan. I don't mind how long it takes, I just want it to work!!
Dr Neil Basu in Glasgow has close links to PMRGCA Scotland and spoke at their AGM - no idea if he does private work though. You'll be unlikely to see him on the NHS though.
I think you seem to be looking at it the wrong way round. You start at a high dose and taper slowly and carefully to avoid flares until you find the dose at which you start to feel symptoms - and then you immediately go back to the last good dose. Then you regroup. The settling at a dose comes much later - after tapering.
I was thinking of settling at a dose that works for me BEFORE I start to taper. My concern is that the GP will tell me to reduce the dose (currently 20mg - put up from 15mg by another GP) but because I still ache, I'm not sure that's a good idea. However, you have suggested it's DOMS, so does that mean that time, and rest, will see it settle? But I presume I still wouldn't want to start tapering until it has settled??
Well yes, you do. But 20mg and patience should be enough really, it is very unusual to need much more except to get a very speedy result. The reason we make such a thing about taking it easy and behaving like a poorly person for a while at the start is to help achieve that. It's a bit like saying you are trying to put a fire out by throwing burning bits of wood onto it! Or mopping up the puddle a dripping tap is making on the floor without stopping the tap dripping as well.
The GP almost certainly won't know if this is PMR or DOMS so he should allow you more time. I'm assuming here that there has been a reasonable improvement in your symptoms despite you doing too much?
Quite a few people have to go up from the starting dose…I did. In my case it only went from 15mg, which was OK, but didn’t solve quite as much as I hoped, to 17mg,which was much better. You may need just 1 or 2mg more. But pred doesn’t give you all your life back, ha ha! Wish it did. But if it’s DOMS, then steroids won’t work for that!
Dr Sandeep Bawa of Nuffield in Glasgow was the 4th (and last) rheumatologist I saw, and the only one I would bother with again.
[Added first name.]
I also would be interested if you find someone
PMRGCAuk North West Support Group ready to launch!
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