Find a Doctor that works you & PMR!: Having been on... - PMRGCAuk

PMRGCAuk

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Find a Doctor that works you & PMR!

jane57 profile image
5 Replies

Having been on 15mg pred for 6 wks since March 2015 was reduced to 12.5 mg and pain in hips came back with fury. I couldn't wait for Rhuematologist appointment on 2nd June so in desperation went back to GP this morning. Had to see a different one and wow what a breath of fresh air, his knowledge of PMR is very good and reassuring. He put me straight back up to the starting 15mgs and would not be prepared to taper until We are ready and at no more than 1mg at a time. Also suggested I discuss at Rhuemy appt. the need for bone scan to get a starting platform, and bloods booked in. I told him I have discovered this fantastic site and he was fully supportive stating that it is the tried and tested methods for Pred withdrawal that work the best. This of course isn't rocket science but how refreshing to find a Doctor who shares this view with many of you on the foram particularly PMRpro. So grateful to everyone who takes the time to write and share experiences. What I think I am trying to say is if you don't feel you are getting the help and support you need from your usual GP try another one and mention the many sufferers on this site who are living, struggling and dealing with this disease. As we all know, we don't fit into little boxes, our symptoms need individual management. As a PMR sufferer I feel so much better and more positive today just taking more control with a Dr who respects, listens and acts. The more information you can get the stronger you will feel. Good luck to you all on your PMR journey don't let it beat you and share your fears. There are so many lovely people on here to help, as I have been.

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jane57 profile image
jane57
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PMRpro profile image
PMRproAmbassador

Wonderful - they are out there but you have to be prepared to try another GP if the first is useless. And there are practices that insist you can only see one particular one - bad practice in my humble opinion.

Good luck - though you need less than many: you have a sensible doctor! In fact, you may not even need that rheumy so if they aren't helpful don't worry.

Hi jane57, we exchanged posts the other day re reducing steroids when we were both struggling. I'm so pleased that you have found a supportive GP and I hope you now continue to improve. Over the last 10 days I seem to have settled into the reduction to 12 so am keeping my fingers well and truly crossed . However I think I am going to discuss a slower reduction on my visit to my GP tomorrow. So pleased for you though.

jane57 profile image
jane57 in reply to

Hi Patinso, thankyou for your comments. Maybe suggest to your GP that you would like to reduce Pred at 1mg at a time? Good luck speak soon.

PMRpro profile image
PMRproAmbassador in reply to

Not only 1mg at a time - but spreading each reduction in a way similar to this - it or something like it is being used by a lot of people on all 3 forums with great success, are used by a couple of rheumatologists and being looked at by one of the research groups. It helps avoid the few days of discomfort that almost everyone suffers at a reduction

healthunlocked.com/pmrgcauk...

jane57 profile image
jane57

Yes, thank you PMRpro that spreading the reduction is something I have a copy of for my tapering plan. It is a lovely day here in Cornwall. Stay strong everyone.

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