Help please reduced to zero presdilone in start of January 2021. Over the past few weeks I have noticed lots of symptoms returning. Main ones are stiff neck pain between shoulder blades and all over horrible skin feeling on my back shoulders and thighs. I would appreciate any advice
Needing help on my condition : Help please reduced... - PMRGCAuk
Needing help on my condition
It is not uncommonn for people to experience symptoms returning after 7 or 8 months and what it often means is that the underlying autoimmune disorder was in a low activity state when the pred was stopped but it continued at a low level or possibly even increased a bit and eventually the unmanaged inflammation built up until it got to a level that was enough to cause symptoms. Often just sticking at 1mg pred a day is plenty to avoid the relapse threat. Prof Dasgupta in Southend told us last year in a seminar that he often keeps patients on 2-3mg longterm and find it avoids the risk of relapses.
It might be worth discussing going back to a low dose of pred - because it is easier to avoid a complete relapse when you take action sooner rather than later
Thanks for your reply I am based in uk. And waiting list or even trying to get appointment to see rummy takes months I still have indate pred do u think I should take pred and if so what amount and over what period. Thanks john
If it were me I would try it - but we cannot tell you to do that without a doctor's approval. Which is why I suggested discussing it with your GP.
OK thanks will try to get appointment with doc tomorrow will keep u informed
Good morn pmr Pro got phone appointment with doc he has told me to take 4mg of pred for two weeks then start reducing by 1mm also appoint with nurse to check bloods. What's your thoughts
Probably a good start - though why 4 rather than 5mg??? How soon will the bloods be done?
Getting bloods done today won t hold breath for results will keep u updated thanks again for help
Good morning pmr Pro just to let you know bloods came back OK what would your advise be on reducing steroids. phone app doc told me to take 4mg for 2 weeks and that was his input
Mmmm - but what does "OK" mean! My ESR was never out of "normal range" but it was significantly raised for me!I'd try the 4 or 5mg for a week if it clears the symptoms quickly - and then try 2.5mg to see if that is still enough. The fact you got to zero means the disease activity is pretty low and a low dose will probably be plenty. But in my experience, symptoms are far more meaningful than blood test results.
Hi pmr Pro I haven't got any knowledge off what bloods should and should not be I will forward a copy of bloods hope to hear from you. John
Indeed very OK!! I somehow doubt your normal ESR is any lower!
But that doesn't mean you aren't having a flare and symptoms rule.Has the raised pred dose helped?
Almost all symptoms gone within 24 hours
Do you have a good gp / rheumatologist? I have been off pred since December last year and my rheumatologist said that if any symptoms returned she would not automatically assume it was pmr but would conduce a series of tests before prescribing more pred.
Just wondering did your pmr actually return. Thanks