Feeling disheartened

Hi all

Been to 1st rhuemy appointment today saw specialist nurse first took all my details & symptoms wrote everything down took to rhuemy for her to read waited for a while rhuemy then came to see me was in room for 5 mins said she didn't think I had pmr that I need to get off steroids as soon as possible. I'm currently on 20mg she said I need to reduce 5mg every 2 weeks. She didn't seem interested what is causing all these symptoms feel quite angry that I have taken steroids for 6 months unnecessarily. Sorry for the rant. Feel like I'm back to where I started 12 months ago.

Stanley 123.

8 Replies

  • She needs to make sure you don't reduce too quickly as your adrenal glands need to start producing cortisol again. As soon as you are at 10 mg you really need to be allowed to reduce more slowly in much smaller steps. Thing is, if prednisone has not helped your symptoms, and reading your other posts its looks like it hasn't, the rheumatologist needs your pred dose to be very much lower in order to be able to investigate other possibilities. I hope that is her intention, that you are not just being hung out to dry.

    The steroid withdrawal pain may be significant although hopefully temporary. Ask your doctor how you should most safely and effectively deal with it. There may be things you can do besides taking more drugs which could help. She needs to take some responsibility for making sure you, her patient, are not caused undue suffering.

    Good Luck. Please let us know how things go for you.

  • If you are currently on 20mg and have been on pred for 6 months - you will not be able to reduce to zero pred at that rate without problems. Down to 10mg, even 7.5mg, will be uncomfortable perhaps but not risky but below there you will need to reduce much more slowly to be sure your adrenal function is returning OK.

    As Heron has said - if 20mg pred isn't helping then it may well not be PMR and the only way for the rheumy to find out is to get you off pred or at least to a very much lower dose. There are a few people on the forums recently who have had to do that and it hasn't been as bad as they expected down to about 5mg which is where you do start to notice if your adrenal glands aren't doing too well. So be careful below 10mg.

  • Thanks for the replies. I am actually quite relieved not to have pmr but would still like to know what is causing these problems. The rheumatologist also said she thinks I'm too young to have pmr after hearing her say that I wasn't too impressed I'm 53 & know that people in this group are in their early fifties. Thanks again will keep you updated.

  • Ah well - she'd probably decide that whatever I have it isn't PMR since I was 51 when it started and is still here after 13 years... But it responds nicely to a low to moderate dose of pred so I'm not arguing. The "if it walks like a duck, quacks like a duck and looks like a duck means it probably is a duck" concept is anything to go by - it's PMR!

  • I'm so sorry for you. This happens often because specialists are in such demand but it is so disappointing and I hope you feel better for getting it off your chest!

    In the past I have paid to see a specialist so that I have the confidence to ask as many questions as I wish without being hurried out of the room but that is no longer an option for me and I suspect a lot of us!

    Even for my GP appointments I find it best to write all my questions down and if possible the answers.....if you don't get replies to all at least you won't feel your time has been wasted. I think that some specialists forget how long we may have waited for an appointment, then had to travel to the hospital only to be kept waiting again.

    I would consider asking to see another Rheumatologist who may be a bit more helpful!

    Good luck :)

  • hello Stanley, well your case sounds somewhat like mine, gp diagnosed pmr in oct 2016, started on 40 mg pred, no baseline bloodwork done first, just based on symptons, shoulders, glutes, hamstrings, referred to rheumy couple weeks after that, she could not confirm pmr, started reducing pred, down to 17.5 since jan 18, only now, kept me at 20 for al most 3 ms prior to that,, i too am so frustrated , had several issues going on prior , back etc, referred to back specialist now , and shoulder specialist waiting appts, all this time, still no definited confirmation from rheumy pmr, blood work clouded she says, although some inflamation shows up, very worrisome, when they can,t get to bottom of what causing problems, and very slow at referring and checking out other causes, meanwhile, i worry been on pred this long, and experiencing some side affects now, what does rheumy advise you to do now,

  • Hi arvine

    Yes you do sound just like me it's very frustrating. Rhuemy wants me to be off preds entirely by 10th April not looking forward to this drop so quickly. They are doing blood tests end of March then end of April then will see me again to decide whether I do have pmr or not in the meantime if I have any problems to either contact them or my Gp not got much faith in either at the moment. I'll just keep my fingers & toes crossed.

  • well good luck with all that, the stress in not knowing contributes to our symptons i think Stanley, and being treated for one thing, unknown, while something else is being left untreated is worrisome to say the least, plus, as i said, suffering with the side affects of a drug we are taking when, possibly is wrong treatment is just constant stress, and seems along with pmr symptons, have other things cropping up, like just 2 weeks ago, started having groin /hip pain, what the heck is going on with my body, so many questions, so many unanswered questions, take care hope you get a diagnosis soon

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