Rheumy Appointment

[TedTheMaineCoon]

Hi

I have a rheumy appointment today . I’m really concerned that she will fob me off about my ‘PMR’ . I’ve seen her once before , in June .

She confirmed I didn’t have GCA , which I was treated for due to symptoms of GCA .

I was in on a high dose of pred - 40mg per day , she tapered me over 8weeks down to no pred . During that time my ‘PMR’ returned - agonising & been in pain since august .

She didn’t think it was pmr as I had it unilaterally last year( Gp diagnosed pmr) . Although bilateral since . Gp prescribed naproxen, then I was given co codamol , which none gave relief - which wouldn’t. I’m going to buck up courage to ask for a second opinion if not satisfied - do you guys think that’ll be okay ?

I hope she puts me back on pred , don’t want steroids . But I think it’s a case of having to .

I believe she is going to send me for more blood tests . I hope she’ll investigate more - Here’s hoping .

Regards

Lesley

[Nanatoo]

if you have all the symptoms of PMR and preds relieve them I think you are entitled to insist they prescribe them for you especially as the painkillers did nothing to help. You know how much pain you are in and it’s probably very disabling. I actually burst into tears when the rheumatologist I saw said he wouldn’t give me preds after I’d suffered for 6 months. So he relented and gave me a two week trial which worked like magic in a few days. They have their reasons for trying to keep us off long term drug use but if they’re the only thing that works they just have to let us have them. Good luck. Be strong, believe in yourself

[TedTheMaineCoon in reply to Nanatoo]

Thank you so much . Yes and without the preds , I’m sure long term inflammation would have detrimental effect on our bodies ? I may be wrong , but could be so .

[Nanatoo in reply to TedTheMaineCoon]

The inflammation disables you ,well it did me, so anything that helps you move properly is essential

[PMRpro Ambassador in reply to TedTheMaineCoon]

Long term unmanaged even low grade inflammation is implicated in many disorders - cancer, depression, cardiovascular disease etc etc etc ...

[PMRpro Ambassador]

The clinical picture is of PMR - it does quite often start more on one side than the other - and you are now pretty textbook. If she still maintains it isn't PMR and cannot offer an alternative diagnosis, you are quite in your rights to seek another opinion but I'm not sure I would ask her to arrange one since she is likely to suggest someone who will agree with her. See how she responds to the change in situation first.

[TedTheMaineCoon in reply to PMRpro]

Okay ! Thanks for the advice , much appreciated.

[Sophiestree]

How did today go?

[TedTheMaineCoon in reply to Sophiestree]

Hi thanks for asking . Well the rheumatologist

Is thinking maybe rheumatoid arthritis, but she said it’s a bit of a mystery because my recent inflammation markers were in normal range . She gave me a steroid injection in my shoulder , which has done nothing for the pain . She doesn’t really want me on steroids because of my diabetes. So I’m to phone in two weeks and if this steroid injection doesn’t help. She’ll put me back on prednisolone .

Anyway she sent me to have blood tests and X-ray on hands and shoulders . Also I’ll get an appointment through for a scan . So I suppose just got to wait and see .

[Sophiestree in reply to TedTheMaineCoon]

well at least she said she would put you back on the pred if nothing changes. Might mean you have 2 mismiserable weeks though. Hope you get quick answers.

[TedTheMaineCoon in reply to Sophiestree]

Thank you 😊