Finally got some action but it has taken me back to square one!

[Penguins3]

Following on from my previous post and upping pred by 5mg to 13 because I was struggling the pains and stiffness did not reduce as I had hoped and I turned to my surgery for help. A gp got in touch quickly and took bloods straight to the hospital himself ( concerns about GCA) . The bloods were normal and after him talking to rheumatology told me to drop down to 8mg pred and continue tapering! He has told me to take co-codamol 4 times a day for the pain even though I said they don't work. I appreciate the help he has given to me but he is being guided by the rheumatologist who just wants me off pred. It's been said on here that blood tests are no longer a good indicator of what is going on, how can I tell the expert (who is already annoyed that I increased pred myself) they might be wrong?

[PMRpro Ambassador]

You probably can't - your only real hope is of getting another doctor who understands PMR, and that cocodamol is useless in PMR. If it is PMR then you need pred. Is there any hope of seeing another GP who is not blinded by a rheumy who doesn't get it?

Is this the rheumy who diagnosed you or is he in disagreement with a GP diagnosis?

Either way, I think you need to get a GP onside who will listen when you say that cocodamol doesn't work and allow you to try more pred to see if it is a flare first. If pred works and cocodamol doesn't, it is basic evidence this is something inflammatory. The rheumy either needs to accept that or you need a different rheumy because the relationship with the current one is broken - that is a ground to be switched to another who doesn't have preconceptions about what it is and how it should be managed.

Is a private consultation an option?

[Penguins3 in reply to PMRpro]

I first had GCA and when pain and stiffness occurred in shoulders rheumy said oh it's PMR . The gp was very keen to help but when he contacted rheumy he said I was to do what they said. Unfortunately there aren't many gp's let alone rheumatologists around.

[PMRpro Ambassador in reply to Penguins3]

Maybe he should try a different rheumy ...

[Pixix]

my rheumy wanted me to reduce from 5mg to zero in 8 weeks, & then get a test. He was angry that I’d gone down twice from 5mg, but never made it to zero due to adrenal insufficiency issues. He said the next time I was to ignore any sickness, to fight through it & continue to zero. Quickly. I decided I would not see him again. Change to another rheumy. Find sane body who understands adrenal insufficiency! Fortunately my GP understood it all, & I back under his care. The interesting thing is that I wasn’t referred for PMR, but for OA, possible inflammatory arthritis & hypermobility!! But my notes said I have PMR! Grrrrrrgh!!