Thought I had finished with Pred!

[Maryis80]

Diagnosed back in 2017 and have gradually reduced Pred with the help of this forum and rheumatology consultant. At the end of 2023 I came off Pred but several weeks later had a flare, and on the advice of consultant he put me back on 3mg. Have reduced the dosage gradually over the past year and after seeing him in early Dec 2024 I stopped Pred once again. However, over the past few weeks pain and discomfort has returned, shoulders, upper arms hands lower back and thighs and front of ankles. I do not have the dreaded fatigue but cannot walk for more than 45-60mins without being exhausted. He gave me a prescription for 1mg Pred in case I need to start again but to email him first. Do you think I should restart the Pred now without contacting him and see how it goes. I have appointment to see him early March.

[PMRpro Ambassador]

I certainly wouldn't wait until March!!! It is a quite typical occurrence - 1mg is loads to manage the inflammation day to day, zero is a step too far!

I would treat it as a flare if you can - have you enough to take 5mg for a week and then drop to 1mg? You may have to clear out the accumulated inflammation from the last month first so 1mg straight off may not be enough though you could try.

But good for him for accepting it may be the case. How soon you decide to do it is up to you, but the longer you leave it, the harder it will be for 1mg to sort it out.

[DorsetLady PMRGCAuk volunteer]

For the record, totally agree with PMRpro… and waiting until March will only give inflammation more chance to build up.

[arvine]

just curious some of your experience sounds familiar, have you had exrays, MRI s etc , is it possible these symptons could be some form of arthritis, back degenerative disc disease, I ask this , because when I started to have all these symptons , rheumy said no longer had pmr? But exrays etc showed the above results, ie osteoarthritis, buldging discs, dgenerative disease ?

[Olympian]

I am about to stop taking my steroids currently on 0.5 taking my tapering very slowly. All OK at the moment although a bit anxious about coming off completely. Hope all goes well with you

[PMRpro Ambassador in reply to Olympian]

Just take a REALLY long time on that last 1/2mg!!! And to be fair, if you can get to one 1/2mg dose once in 2 weeks by extending the days between dosesevery 2 weeks - you should be fine!!!