Up date on advice needed

[Laceygreen]

Phoned doctors and Ra team but the Ra team got back to me today and they are not happy that I took it Upon myself to take 15 mg of steroids it’s alright for them to say I shouldn’t do that they’re not the ones in pain but I have so long to get back to me and let me know if you carry on taking them thank you all for your advice and love

[Mmrr]

I've increased my steroid dose on a number of occasions when rheumatology have taken a long time to get back to me.I've always prefixed my conversation when I eventually did get to speak to someone saying...I waited x number of days, in a flare without medical attention so I increased my steroids to....x....

Can you help me now please ?

I've rarely been told off....but remember on one occasion the nurse did say I shouldn't have done it....I asked her what should I have done and what would she would have done in my situation? ......silence.....

[Laceygreen in reply to Mmrr]

Ra nurse got back to me and the doctor has said yes I can take them for 3weeks but coming off them slowly x

[Mmrr in reply to Laceygreen]

Excellent

[Deeb1764 in reply to Laceygreen]

My GP has always known I go up and down the scale of mg based on issues and as he says most people would not increase their steroids unless they needed too and he feels I know what my pain level is and issues and I only go to high doses ie 30mg when asthma issues kick in or been taken off RA drugs. So he knows I always drop back to 5mg even when he has increased me to 30mg as he knows I do not like being on high doses.I am an adult I want to control my disease and flares etc and my GP listens to me and gets I get how the meds work.

I think you did the right thing and you had called for HELP and none was given. And as MMr says if they do not respond what do they expect!

Glad sorted and hope you get to enjoy your holiday x

[Sunset54]

I have used steroids in this way for years. My GP and RA consultant trust me to know when I need an increase during a flare. Many years ago I was in agony with a flare. Could not move. I lay in bed waiting for an on call doctor to call. When he finally did many hours later he said ‘take 30 mg steroids’ for next three days and then reduce it slowly back to 5mg. After that I decided no more waiting in agony I am sensible enough to know when this is necessary . So now that’s what I do. Thankfully I have managed to stop them altogether now . But they are by far the best for immediate relief. I know they are dangerous in long term use and RA consultants preference not to give them but at the end of the day it’s about quality of life too!

[summer32A]

I have done this previously with steroids too!

[oldtimer]

I am (now) trusted by the rheumatologist to increase my steroids as necessary with a flare. The GPs were not happy with this (especially with Covid around) and I had to get the Rheumatologist to write to the GP practice with this specific advice.

[Deeb1764 in reply to oldtimer]

It shows something as simple as steroids my GP sorts and issues and RA go with what he does. You have the opposite. Its so random how things are done!