I saw rheumatologist on Wednesday who was not my usual one. He told me all my pain i.e. head, shoulders, hips was due to taking steroids and having a build up of inflammation. I have to reduce prednisolone by 1mg every month. He gave me amitriptyline for the pain 10mg which I have taken last 2 nights and have to say not as much pain. What I can't understand is if steroids are supposed to stop inflammation why are they making it worse for me.
The rheumatologist was adamant that people are increasing their steroids because of flare ups but it could be an inflammation issue because of the steroids. Sounds like a viscious circle to me.
Would appreciate any comments.
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Esmeruth7
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"He told me all my pain i.e. head, shoulders, hips was due to taking steroids and having a build up of inflammation"
The entire purpose of taking prednisolone is that it is one of the most powerful anti-inflammatory agents available. If you have a build up of inflammation it is because the pred dose is too low - not too high.
I would love to know what his evidence is for this theory - because it's one I have never heard from any of the rheumatologists I work with in the PMR field!
Thanks PMRpro I have just read Sarah Mackie's report in Newswire issue 36 and all comments on this forum and I am utterly confused as to what the rheumatologist told me. It seems I will have to wait for my nect appointment to get some answers.
Strange information and somewhat unbelievable,I have been on amitriptyline for 6 weeks for sciatica. It certainly worked for sciatica but did nothing for my PMR,
Do please ask him to explain the mechanism so he can educate us on the forum. Goes against everything I’ve read and been told, so I’m ready to have my mind blown.
I certainly had my mind blown as I was convinced he was going to up the steroids. I will certainly let you know what happens on my next appointment. He seemed to be really against long term steroid use.
I'm sure he is - but obviously doesn't know much about the nature of PMR! Next question - how does he feel about condemning patients to long term pain and disability because he won't use pred as required in PMR? In the absence of any other options ...
I had a Rheumi give me his sheet to lower, which was very fast....it put me in lots of pain, when I returned and told him, his words were, if you have pain lowering, it's not PMR....I was speechless, which is very rare for me!....he saw my face and said, this is how I would treat my mother, I can't print what I was thinking. I was so p!eased my sister was with me to witness what he had said!....I never went back!
Well, that does seem to make some sort of sense Dad2Cue. However, firstly it would be good if the rheumy explained his thinking. And more importantly, if we can’t increase or take steroids, how are we to control pain?? I don’t get where this rheumy’s coming from, in terms of real life as it is lived!!!
Sorry, did you come to the conclusion that the length of time you were on pred made it harder to come off in itself? Or simply that you were still in need of pred so you couldn’t come off?
I feel I need to try to get a better handle on how hard to try to reduce. I’m only 15 months in, was at 15mg in March 2021, 40mg in June 2021, now at 12.5mg. If I reduce, I’ll probably have to reduce my activity level, and I feel at the moment that life is for the living, especially following lockdowns. My grandchildren will only be this age once!!
I got tons of useful information in this thread. Thanks for creating it! 🙏 in a week I guess I will also order some steroids from buyanabolic.com/ to make me feel a little bit better. At the moment I am choosing positions to order.
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