PMR - update on doctor call

[Gimme]

Hello lovely folks, thank you for your help yesterday.

Spoke to the lady doctor this morning and I am happy with how it went. All my results came back normal and the conclusion was that if it wasn't for my PMR, I am in pretty good health for my age. That aside, she said not to change anything with meds until I get back from my holiday and we can discuss then. I told her that I am keen to get off pred when I can, but I don't want to rush and go through the agony of tapering and then flare and end up back on it again. She agreed with me and I don't think there will be any pressure to taper before I am ready or any faster than I can comfortably manage.

We talked about my arthritis and I said that I thought I was probably slightly better than most people of my age on that score and she agreed. But we agreed that a confounding factor for the PMR might have been the arthritis in my neck, which doesn't respond to the pred that well, but does respond pretty well to a couple of ibuprofen daily, so she wants me to use that as a top up while I am away, with a view to monitoring the situation and a review on my return.

I also told her that I thought that lack of continuity in care has caused some confusion and she says that they are changing the appointment system next month, so it will be easier to stay with the same doctor. She also said that I have a lot of insight into my health and she thought I was doing a great job of caring for myself.

I'm feeling quite cheerful this morning, compared with how angry and upset I felt after the grumpy rheumatologist a few weeks ago. Hopefully, I can stay with the nice lady doctor now. She seems to listen and I feel that I am in safe hands with her. I've been so down in the dumps about the PMR, but if that is all that is wrong with me, apart from a spot of mild arthritis, I have a lot to be optimistic about and I do feel happier today. All I have to do now is keep the bossy asthma nurse at bay.

Thankyou for your support on here. I do appreciate it.

[DorsetLady PMRGCAuk volunteer]

Good.. now concentrate on your holiday-and enjoy.

[Gimme in reply to DorsetLady]

Thank you. 💗

[PMRpro Ambassador]

Someone who listens is a precious gift!

[Gimme in reply to PMRpro]

oh, isn't it just! We all need to be heard. I think that is why I was so incensed with the rheumatologist. When I read my notes after, I could tell that he hadn't listened to a word that I had said.

[PMRpro Ambassador in reply to Gimme]

Happens all too often. I had one - total lack of interest in how textbook PMR symptoms resolved by 75% at least in 6 hours after 15mg pred. The pain was muscular - not joints and he wanted it to be psoriatic arthritis despite me never having had any skin problems.

[Gimme in reply to PMRpro]

I think that's the problem, too many pre-set notions. My experience has made me wonder how many PMR patients the rheumatologists actually see, compared with other rheumatic conditions. The GPs seem much more on the ball. If only the atypical patients are referred, then maybe they don't see many. It's great if they are making sure that other conditions are excluded, but my experience has left me with very low confidence in the two guys that I saw and I didn't get the feeling that they knew much about PMR. Even the ophthalmologist seemed more clued up. She was great, actually. She was very kind and very knowledgeable about PMR, but then I had been referred to her because of a question mark over possible GCA.

The doctor made me chuckle this morning. She said that I had had a lot more tests than most people do in such a short space of time. I didn't point out that that was because I had kept going back and pestering them to get some straight answers.

[PMRpro Ambassador in reply to Gimme]

Shame they were forced to do their job better ...

Some rheumies appreciate the complexity and variation in PMR and also that it may well be GCA/LVV in sheeps clothing. Others don't consider it a "real" illness so not worthy and beneath their dignity. Nowadays that may well result in the patient with ?PMR being denied an audience with a rheumy which was requested because the GP wasn't as confident of their diagnostic skills as they should be and the end effect is that the patient suffers.

[herdysheep]

Result!

[cycli]

so glad you are happier. Being listened to is key. That's why I stay with my GP. She trusts my assessment of my condition. The more you know the better prepared you are.

[Gimme in reply to cycli]

Thankyou. 💗

[SheffieldJane]

Glad to hear that you have found your safe haven.

[Seekingasolution]

really pleased to read how much happier and positive you are Gimme !