WISH THEY WOULD MAKE THEIR MINDS UP!.

[Ta1ch1]

Take it, don't take it?. I had a response from the Department of Rheumatology and it was short and to the point. Your referral has been rejected and we refer you back to your GP with respect to any further management of your symptoms. It is unlikely that an appointment at a Rheumatology clinic would offer you anything further.?????

Your Doctor may contact us using our email advice line or by further written correspondence if preferred.

A further phone call with my surgery led to me being told that the accepted route is to reduce PRED to zero using a 1mg reduction on a monthly basis starting immediately?.

Tomorrow I have a GP appointment and I think some stern words will be the order of the day.

[Hidden]

What a set of numpties.

[Hidden]

Hi Ta1ch1, I responded to this an hour ago, but see I must have forgotten to hit "Reply." DOH!

I think what I said was you must be so angry and frustrated!!! I know I would be! And yes, I believe some VERY STERN words are in order. I'm hoping you get some good advice from the "experts" on this site as to what you should say and what you do, as I'm not really sure now what your course of action is?

I wish you the best of luck and hope you can get this resolved soon.

[Hidden in reply to Hidden]

I am always forgetting to hit send on all my messages by text etc. I look at my phone hours later and it's still there. duh!!

[Hidden in reply to Hidden]

Pred head. 🤡

[karools16]

I think you are being very shabbily treated. Rheumy referral rejected? So, if your GP doesn't know, like most, how to treat PMR, who is going to help you manage your condition? Make sure those words are stern! I really feel for you.

[Celtic PMRGCAuk volunteer]

Ta1ch1

"Your referral has been rejected "

On what grounds, for goodness sake! That's the first time I've heard of a rheumatology department rejecting a referral from a GP for a PMR patient. Whereabouts are you, roughtly? Good luck with the GP appointment tomorrow - another pair of ears in with you might be a good idea!

[Ta1ch1 in reply to Celtic]

Swansea. It would seem that the new regime is a slow reduction of Pred ( irrespective of what dose you are on ) from current daily dose ( 12mg), reducing by 1mg monthly. this is backed up by monthly blood tests to record the inflammation markers in the blood. I was offered painkillers to assist me in coping with the pain and that was it. When I pressed on the subject of rejected referral I was told that the clinic would carry out exactly the same procedure and it was felt best to do this locally by the GP.

I get the impression that they either do not understand PMR or are reluctant to class it as PMR.

Oh well onwards and hopefully upwards.

[PMRpro Ambassador in reply to Ta1ch1]

They don't understand PMR - but we know that.

It is possible that painkillers MAY help the reduction pains - they WON'T help PMR pain.

[Celtic PMRGCAuk volunteer in reply to Ta1ch1]

Ah! We used to read lots of complaints from patients about rheumys, or lack of, in the South Wales area - I had thought (hoped!) it had improved by now. Hope at least your GP continues to monitor you well as you reduce down through the doses. You may need to reduce the the size of the reductions as you get nearer to around the 8mg dose,

[morrison]

That is disgusting. Get a new Doctor if the one you have now can't do anything for you.

[Hidden]

Hi

I would wait and see what the GP’s plan is. After reading comments on here for many months sometimes the GPs are better at managing things than the Rheumy. It does sound like the reviewer who made the decision might be a little clueless!

[Grants148]

Hi a GP referred me to rheumatology because l was getting pain and stiffness in my legs although l had lowered the steroids to 3mgs.They wrote back to the GP to say that they did not think it was worth giving me an appointment as l was on such a low dose of steroids.lt may not be PMR causing the problem with my legs but l shall never know for sure .

[powerwalk in reply to Grants148]

Is it your legs all over that you have the pain - or the upper legs? Just wondering as I have awful leg pain all over when I reduce the pred.

[Grants148]

Hi Powerwalk,the pain and stiffness are in my lower legs,but can sometimes spread upwards.lt is much worse during cold weather,l also get numbness in my feet and legs and cannot kneel down even briefly as my legs stay numb for days after.This makes gardening difficult,especially as bending over pulls on the back of my neck. I guess it probably is part of the PMR,it was much better when l was first started on a high dose of preds and l am reluctant to go up higher again if l can put up with the problem .l wish you all the best and hope things will improve for you.

[PMRpro Ambassador in reply to Grants148]

If 5mg makes it better - then take it. These are very low doses and less corticosteroid than your body makes naturally anyway. You could take 5mg for the rest of your life without it causing any problems - if it makes things better, take it.

[Jackoh]

Doesn't make sense! Be interested to see what your GP says?

[PMRpro Ambassador]

There is no "accepted route" - the tapering must be adjusted to the individual patient and their symptoms at a given dose. Yes, you can TRY reducing 1mg per month but whether you will reach zero without a return of symptoms is another totally different matter.

However - this is a relatively new development and I really have no idea what can be done about it. There is a world shortage of rheumatologists and so in the UK they obviously are trying to reduce the workload to stuff that requires more specialist input. PMR is the poor relation again. Mind you - in my experience, rheumatologists are not all they could be with regard to PMR!

It might be worth speaking to various GPs about where to go from here - some are much better informed than others.

And they wonder why so many chronically ill elderly patients end up in hospital needlessly...

[Patience47 in reply to PMRpro]

Amen

[rosie_jones]

How about involving the PALS - Patient Advice and Liaison Service? This sort of response from the Rheumatology Service is exactly what they need to hear about. And Good Luck!

[Ta1ch1]

Yesterday my wife bought me a very thoughtful present. A telescopic back scratcher. Think telescopic car aerial with a small fork-shaped hand on the end.

BLISS!.