Coming off Pred: Hi everyone. First post here but I... - PMRGCAuk

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Coming off Pred

Bobwif profile image

Hi everyone. First post here but I’ve been following for some time. I was diagnosed with PMR in 2018 and started on 20mg of Pred. I’ve been reducing gradually like many over last three years. I was hoping to get off completely before now but several times when moving from 5 to 4

Found my hands stiffened up significantly.

Now down to 1 mg and close to freedom. Wondering if the final step to zero is easy or if I should beware of flare ups after. I’m on Alendronic acid once a week and Advil daily. Should I stop these too? Thanks. Bob UK.

13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You do need to be aware of flare ups, but it really depends on whether your PMR has gone into remission…Are you having any hand issues at 1mg? - just be aware of them as that seems to be YOUR indication all is not right.

I would reduce to 0,5mg first, see if that’s still okay before trying to go to zero….0.5mg can make much more difference than a lot realise - doctors included. And maybe a slower taper (if not already) so it takes weeks to get from 1mg to 0.5mg and then 0.5mg to zero rather than overnight drop.

You should be okay to stop AA. ..but do you know bone density situation, had a recent DEXA scan? Maybe discuss with GP.

Why are you on Advil? shouldn’t be taken with Pred.

Good luck, you may get a return of normal aches and pains, so don’t assume very little niggle is PMR, but just be aware.

Bobwif profile image
Bobwif in reply to DorsetLady

Sorry. Typo. Adcal not Advil.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bobwif

Did wonder…. I stayed on that after Pred, still am, 5 years on. Was suggested on last DEXA scan notes….personal history…quite happy.

Bobwif profile image
Bobwif in reply to DorsetLady

Have bizarrely had a swollen big toe for last couple of weeks. Any connection? Looks like gout!

PMRpro profile image
PMRproAmbassador in reply to Bobwif

Does it hurt? Gout is PAINFUL!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bobwif

Could be - but steroids usually help it ….believe in the dark ages (not literally) PMR was called pseudo gout.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Far worse than that - senile rheumatic gout!!!!!

ncbi.nlm.nih.gov/pmc/articl...

I'm not senile yet thank you!!

Psuedo gout is a thing though - similar symptoms but different crystals causing the joint irritation.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yes can recall seeing “senile”!in description before - anything to cheer the patient!

As we have said before, too many things to go wrong as you age - but beats the other alternative!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Original paper only included male subjects I think though ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

of course! 🤦🏻‍♀️

Constance13 profile image
Constance13 in reply to Bobwif

If it IS gout it is VERY painful. Mine started in my 40s and the pain lasted for over a year. Then it settled down and I was able to walk much more comfortably. If the uric acid is high it will continue for longer. Mine settled down and only every now and again do I get a crystal attack- which is ‘more than’ excruciating.😫

PMRpro profile image
PMRproAmbassador

From my (not personal) experience it can be as hard as any other stage! Surprisingly, 1mg, even 1/2mg can be enough to keep PMR due to a low level of disease activity in check but stopping altogether is a step too far and the inflammation builds up until enough to cause symptoms which may take some months. Just don;t be in denial - act if it happens.

Prof Dasgupta told us he often keeps patients on 2-3mg long term to reduce the risk of relapse. I have to say - if i ever got to 2mg (never have yet) I;d take it and run!!!!

AA and Adcal - is your bone density OK and your diet good re calcium? If yes - don't see they are that necessary.

Hi,Interestingly enough, I had hand issues with pmr after having reduced from 30mg to 5mg after eighteen months. I increased to 7mg on advice from the Forum, and stayed there for ten days before gradually reducing again. That solved the problem, but it still took another five years to get down to a very low level of pred - a half mg.

Hopefully, you’ll do better than me!

Paddy

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