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

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5 Replies

  • sorry to hear you are going through a hard time of it at the mo. In regards to your arthritis I know that most people get arthritis because they have leaky gut or have a lot of stress going on in there life and they even say that if you have root canal that can cause some people to have arthritis. I put some links up on another post about arthritis a few days ago If you cant find them let me know and I will pm them to you.

  • It probably would be worth taking those private reports, as the fact that you are needing so much steroid right now will affect your endocrine system. I wouldn't specifically ask the endo to do the tests, but definitely let them know that you are going to have a bit of a wait to see the rheumatologist and ask if the out of control rheumatology disease could be affecting your endocrine problems.

  • Chin up babs up and at 'em!

  • It depends how interested your endocrinologist is in specialisms other than their own. Some specialists are sufficiently curious to cross into areas that overlap in order to help their patients - or perhaps he or she could hasten your referral to a rheumatologist to urgent. Re the high ESR despite steroids - this could be due to all sorts of things, any of which might cause severe arthritis as an outcome - so I would definitely take your private rheumy report and discuss. Often with autoimmunity there is a bigger picture and this sounds the case with you - in which case you need to tell any doctor you see about all your symptoms and investigations in the hope that they might be the person to move things forward for you.

    Awful that you still have to wait when this could have been a medical emergency - as GCA is.

  • Thank you all for your words of wisdom and advice. I will take it all on board when I see endocrinologist. Kalel, very interesting re dental procedures. 2 weeks ago had dental bridge, still quite painful and did get mouth ulcers afterwards. I'll try and find your links. Hope everyone has a good day. Babs x

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