Really fed up now!!!

I've posted before about Private rhuemy diagnosis of GCA/Palindromic rhuematisim (July). Well, still waiting for all the scans etc. Put me on 30 Pred and said I would need more med when scan results and biopsiy back. Wanted urgent referral to NHS so he could start the tests and meds. Our Rhuemy dept is in crisis, even urgent appts no shorter than 10 weeks. My GP has tried to get them to see me but no luck, just told to go to A&E if worried!!!

Anyway, 2 weeks ago started flaring, Different joints, skull pain back. GP told me to increase to 40mgs. Things settled a couple of days then flared again. ESR to be done - 69. GP told me to stay on 40mgs and repeat ESR 1 week (which had done today). BUT, Saturday felt as though I had gout, could hardly walk. Then yesterday had the most horrendous flare in left hand, knuckles, wrist with pain radiating up my forearm into my elbow. I would have been happy if someone would have cut my arm off. I really thought of taking myself to A&E but kept holding off. Head pain quite shooting in left temple area. This morning pain completely gone in arm, still blown up like mitchilin man but I can deal with that. Feel totally whacked though.

I am going to see the Endocrinologist on Thursday (I have adrenal problems and had my thyroid removed). Do you think it would be a good idea to take my private rheumy report to see if he can somehow get the tests done. Sorry about the long rant. Gosh does it feel good to offload! Babs

3 Replies

  • You could try - they can only say no.

    But next time - go to A&E when it is flaring merrily and explain the situation - especially because of the head pain.

    Funny (peculiar) - I've done an explanation about palindromic rheumatism to someone else today on another forum.

  • Hi PMPro. Hope you are keeping well. I did read your very interesting post re pa. You are a mine of information which really helps us newbies. Thanks. Babs

  • Don't hesitate to get to A&E, especially with the headache. Not worth the risk with GCA. Wish you well, hope things settle down.

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