Stuff fingers now I’m off pred.

[queenhermione]

I finally came off Pred sometime in May. I had been reducing very slowly but finished quite quickly because I wanted less complications if I had to face Coronavirus.

My doctor had urged me to come off months before. I’d been on it for 3 or 4 years reducing using dead slow almost stop, but the last phase was a week on one level, a week reducing.

It all went well, but now a month or so on, I’ve got the light version of PMR again - aching hips, having trouble getting up off the ground etc but a new thing too.

Stiff sore fingers, waking numb and with pins and needles. Warm water helps and things are generally looser by night time. The fingers (middle and ring on both hands) can get stuck and click back, as though dislocated. I think this is trigger finger. I don’t think it’s RA as there’s no redness, heat etc

Anyway, I do have a tiny stash of 1mg but I don’t really want to go back there (although I did love pred), and I’d be really interested to know if other people have had this prob and if it’s eventually gone away on its on.

[PMRpro Ambassador]

At a dose of 1mg you were not going to be at risk with Covid-19 because of that. You couldn't change you history and adrenal function is far more significant. I think some doctors panicked - and now it is obvious that corticosteroids are helpful in Covid-19, they were probably concerned for no real reason. Even Prof Dasgupta said that in his webinar!

It is possible that that very fast reduction at the end means your adrenal function is still lagging behind and that can also cause aches and pains. Some people say it took them up to a year to feel physically back to normal.

[tangocharlie in reply to PMRpro]

And also that the PMR is possibly still there and has flared up again? Could it be that too? For some people 5 is a maintenance dose

[PMRpro Ambassador in reply to tangocharlie]

It could - but I have met plenty for whom 1 or 2mg is plenty to keep the inflammation under control. Then someone decides such a small dose can't be doing anything but it soon shows up when you stop it! There was someone who took 1/2mg on alternate days - bit when she stopped. the PMR symptoms were back a month or so later! And that isn't steroid withdrawal.

[tangocharlie in reply to PMRpro]

I've heard several similar stories on the helpline, people being told by GPs to get off low-dose steroids because of Covid - and then the PMR has come flooding back

[PMRpro Ambassador in reply to tangocharlie]

Of course it does - and that inflammation and other stuff means it's worse than being on a low dose. Hopefull the methyl pred story will calm them down!

[piglette]

I have come to the conclusion if you start having PMR pain and hope it will go away it Won’t! PMR always wins so you will need to clobber it on the head for a while.

[HeronNS]

Trigger finger! Many years ago I had trigger finger and doctor muttered something about having to snip the tendon. Well, being me and not about to even consider such action I trotted off to a physiotherapist. She had to do a little reading and brought me back for a second visit a few day s later. She showed me how to find the ligament or tendon or whatever it was which was catching and massage it. In short order my trigger finger was better and has remained fine ever since.