As flagged up earlier, I am having a flare, so ordered more Pred 5mg as per usual. I had to put a message in to explain the request.
I said that the consultant had advised the increase. It was cleared on line but then blocked by the time I got to the Pharmacist. A new salaried GP texted me -( my one of several years did not even warn me she was leaving which says a lot) - to say she wanted copies of the consultant's letter. She could see that I was never referred and not even to the good specialist in Surrey, although I could have gone privately I suppose.
What to do? So I printed off the salient my first enquiry and the advice received from you, Ambassador and DorsetLady and the page with the PMRGCA logo on it and dropped it into the surgery.
I am sorry I did not ask your permission first. I explained what my nick name was so she knew I was not being fraudulent! Now I am waiting to see if she will let me have the Pred. If she doesn't I will use up the 1 mg, @11mg a day which wont take long, and try again. If she still refuses then I will try and see a GP partner in the practice face to face.
She also said I should take the PPI drug Laz? so I explained that I take drugs in tons of plain yoghurt.
I am feeling so much better since going to 11 mg from 7.5mg - so thank you again for the advice and support.
Female 81 UK
Written by
Motida
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Thanks Koalajane. I dont have one. PMR is not really a rheumatoid disease and none of the ones around here even mention it in their profiles of expertise or even interest. I get the best up to date advice here.
I asked my GP about Steroid Sparing medication once and was advised to research it on the internet. After doing so, decided to stay on Pred and slow tapering. The medication flagged up has its side effects too. At least we understand Pred and how to manage with fingers crossed that PMR will burn itself out one day.
Stand corrected. Apologies. I knew it was a vasculitis but did now know the rest.
I remember reading on our forum that rheumatologists who knew much about PMR were very hard to find, and that our inflammation and pain was best or only controlled by Pred - so why worry about being referred to a rheumatologist. I was refused a referral when I was first diagnosed and was clueless!
Because if you get a good rheumy - and there are some - it is an opportunity to educate the clueless! Pred is the mainstay but it must be used properly - although rheumies do use other drugs to try and get to a lower dose of pred which works well for a small cohort of patients but although GPs write the scripts, the rheumy must initiate them.
Yes I forget his name but he has you tube talks and all kinds of things. But why spend money on a consultation when we have our forum and advisers. Basically PMR has to burn itself out using its own time table is what we are told. Slow tapering and not overdoing physical exercise and being patient seems to be the way to manage.
Glad to say I have a new GP in the same practice from today. He rang me which is amazing these days; Pred reinstated and request for blood test so am very grateful. My last GP got burnt out after only 3 years into her contract as a newly qualified, so I feel concerned for her hearing that.
I will ask to be referred to Dr Rod Hughes at Ashford and St Peters in Surrey because he might recommend the Steroid Sparing option. He might also advise on what sort of things I could do in the local gym and for how long, which would not make the PMR worse.
The Nuffield joint pain programme is something you could investigate - several on the forum have done it and it was presented to us at the charity AGM as something suitable for us
Thank you for this link. It is very useful and I am going to follow up with them
Had a look at the you tube by Dr Hughes and it is also interesting - one or two things at variance of what we know, like tapering and the lower age limits of patients. There is also a good You Tube for GPs which looked very friendly and helpful.
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