should I disregard GP advice?

Gentian I am so sorry you have such pain. When I was first given pred it was like a miracle and the appalling pain all but disappeared. If you are saying pred does not have much effect even on 20mg perhaps it is not PMR you have. If it is PMR you should get the inflammation under control before reducing the pred or you will have problems. 

Gentian,

The advice about cutting preds down "pretty fast" sounds pretty poor to me, uneducated fellow patient though I am.  Cutting down by 2 mg. per week would make a lot of us miserable, I think .

I certainly sympathize with your desperation and if you can, yes, I would get the money and try to see a private rheumatologist as soon as possible. I'm far from qualified as an advisor, but were it I having your problems, I wouldn't up the preds pending such a a visit.  

Please let us know how it's going, and good luck--Barbara

thank you ptolemy and Barbara, for your replies and suggestions.  I dont have bad pain, just uncomfortable stiffness getting a bit worse,  which doesnt fit with what people here say and does makes me wonder , have I really got PMR.?  I am so WEAK, thats the problem. After coming down stairs it can be hard to get a sentence out clearly.   But I recover in half a minute, and dont feel too bad sitting down.  Thats  a viscious circle and lack of moving about surely making me less and less fit. . .  bahh!

Try a different GP for a start - even within one practice there can be wide ranges of knowledge.

Also, follow this link to find lots of info about PMR - and take a copy of the "Bristol paper" in it to your GP. If he wants founded and useful PMR info he can rely on that. It was written for him by top expert rheumatologists to be able to diagnose and manage PMR in his patients better without necessarily sending them to a rheumatologist.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

In fairness to your GP - he has tested whether what you have is likely to really be PMR. If the increase to 20mg didn't bring about a noticeable improvement in the PMR-type symptoms then it is pretty unlikely to be PMR you have and there is little point in being on 20mg of pred which - as you've found - has far more side-effects than 12.5mg. The starting dose for PMR  of 15-20mg should achieve something like a 70% improvement in the symptoms within a few days - which return in a similar time frame if you stop the pred. He could have reduced back to 15mg after only a week at 20mg even faster than he is suggesting, but you could try going down in 1mg steps every 3 or 4 days - that might be more comfortable.

As to upping the pred - if it didn't achieve a good result there isn't a lot of point and I imagine your GP, fairly reasonably, realises it may be more productive if the consultant sees you on a lower dose of pred and with your symptoms in all their glory.

I'm sorry to sound so depressing - but pred can be magic for PMR. It isn't usually magic for other arthritises at this sort of dose. PMR and late onset RA are often confused in the early stages - and there are others that it could be too - and the others don't respond very well to pred. The graphs in the paper I have recommended show that - LORA may improve a little bit but not in the same dramatic way.

You won't be the first person with PMR to arrive at the consultant in a wheelchair - MrsO can tell that story and I'm sure she will later. At least it means they take you a bit more seriously. You do need to see a rheumy but it is very much up to you whether you see one privately. The fact you ask suggests to me you are in the UK? In which case, remember though that it won't be a single visit you have to fund yourself, he won't be able to make a decision on a single visit - and seeing the rheumy privately doesn't mean you get a "better" standard of care, you will always see the same person but that person probably works in the NHS anyway and even rheumatologists are not always very good at PMR. Like MrsO, whose consultants didn't recognise PMR, both the ones I saw in the NHS were hopeless and I was heartily grateful it hadn't cost me anything extra!. Though she and I can recommend one who DOES do private work and will switch you to his NHS list if required - but then it depends where you live.

Hi Gentian, I had this explained to me. At first, prednisolone adds to the cortisol which our body makes (about 5mg + a little here and there but of the most effective kind). After a short while, our body stops producing its own, so there is a sharp drop in levels and it is this drop that is often very noticeable for patients which doctors are not taking into consideration. I have GCA and when mine dropped, I lost some of my eyesight!

Doctors, in my estimation underestimate the difficulties and disabilities associated with PMR (and may I say also GCA, which is far more serious). I have heard of patients being told to lose weight or take more exercise! This is an inflammatory illness caused by circulation problems. 

Personally, I think you need to get your GP on board with your treatment and not 'go it alone'. If you go it alone, and refuse your doctor's advice, you cannot expect good treatment in the future. If you are unable to see another GP at the practice,

You can:

ask for the reasons for a rapid reduction

put in writing your problems,

ask for a printout of your blood test results and check them yourself online

take someone with you to appointments

ask for a double appointment each time you go

see the practice manager

take a tape recorder

Some or all of these methods should trigger your doctor into paying greater attention though if they think that PMR is just natural aging or caused by the patient's lifestyle, there is a personal judgement and you should change your doctor.