Just back from my first Rheumy Appt

[Gran6]

Just met my consultant Rheumy and he was very good, he was not happy with the way my GP had reduced my preds and had left me for two weeks with high ESR and CRP levels before putting me on preds in the first placeHe has given me a plan and I will be down to 20mgs with any luck in four months, I started on 60mgs Sept and GP reduced to 40 mgs two weeks later and then 30mgs which she then reduced to 22.5 mgs. I am on 25mgs now and will be on this for another two weeks,then the plan starts. I felt so much better after seeing him today ,I think I need to see another GP. I am so glad I found this site and thanks for all the good advice .

[piglette]

I am so glad you have found a good rheumy. I think the problem is most GPs really know nothing about GCA and may never even have come across it. My GP seems to know nothing about steroids either!! She did admit she was none too good on drugs, frightening.

[DorsetLady PMRGCAuk volunteer]

Good. Hopefully you now feel more confident on how your treatment is going.

If you're on 25mg now and your Rheumy doesn't expect you to be down to 20mg before 4 months then he's obviously one of the sensible ones and isn't going to rush you into tapering too quickly!

Perhaps you should stay with your GP and let him see the plan from the Rheumy - it may give him a better insight into treating GCA in the future - if you're brave enough that is!

[PMRpro Ambassador]

"She did admit she was none too good on drugs, frightening." Piglette - hope you told her to start doing some homework!!!

As piglette says - it's good when you get a good rheumy! And I'd follow DL's suggestion -education, education, education!!!!!

[nancyannehanson]

I am still waiting to get into my rheumatologist, it's been 4 weeks. current Doc wants me on 25mg feel so washed out. Saddened by how long this is taking.

[Marcy47]

I had to wait 14 weeks for an appointment with a rheumy in Bath.

[Marymon]

Did you ask for an app. with a Rheumy? I am into 3rd week on Pred started on 15mg after initial app. with doc, had a call back from pharmacist now only to deal with her over the phone, she has given me a plan to reduce next week and every four until down to 9 then by one. So at that rate from start to finish in 9 months. Says she wants to get me off them?? I asked do I get another CRP,no, not until you are at the bottom. I did ask what the reading was 29. says it was high, If it takes so long to get an app. with Rheumy should I ask to see one now? Or is it all going to be plain sailing, as she seems to think. There may be trouble ahead....

[PMRpro Ambassador in reply to Marymon]

I think you need a new doctor of some sort and as soon as possible - your pharmacist has no idea of what PMR is and how it should be managed. Nine months is in her dreams. This paper

rcpe.ac.uk/sites/default/fi...

is aimed at GPs and other non-rheumy specialist doctors to help them manage PMR and GCA. And it ISN'T done in 9 months - and unless she accepts that it will definitely be trouble ahead!

This is the other evidence about duration of PMR:

medpagetoday.com/rheumatolo...

[Marymon in reply to PMRpro]

Thank you PMRpro, I will print several of them to hand out to doc if I ever see him again !! and pharmacist. Wonder how they get on prescribing for other PMR patients, or whether they have any. As reading others experiences no one is the same. Good to know Ped. is not thought to be the bogeyman we need to get rid the of quickly, also like the first link, graphs always impress.

My son wil also get a copy, as I am getting very frustrated with being told ' they are the professionals they have studied it and know better than you'😁😁😁 will try not to mention my state of play when asked how I am, but it I is mostly all that is on my mind at the moment.

Thanks again great help

Marymon