Down to half a mg of pred but suffering

[ChoralG]

I have had PMR for two years and was originally on 15 mg prednisolone. Have tapered down to 2 but had to go back to five in May, Started to reduce again and just got to half but very stiff hips and painful shoulders. Do I stick with it and hope for improvement or go back to a higher dose?. I also have a very stiff knee, but think it is a separate issue

[DorsetLady PMRGCAuk volunteer]

Don’t think there’s any point at sticking at 0,5mg and hoping…..go back up to say 2mg….no need to go as high as 5mg.

But do stay there for a good period (Prof Dasgupta does keep some of his patients at 2.5mg for a year) - not saying you need that long, but certainly a couple of months..,and then slow taper - see here for selection - as such low doses there is no rush and even 0.5mg can make a really big difference to controlling your PMR -

healthunlocked.com/pmrgcauk...

Knee may well be something else , so maybe get checked for osteoarthritis for a start..

[ChoralG in reply to DorsetLady]

Thank you. Very good advice. I have been trying too hard to reduce.I think the knee is arthritis, though.

[DorsetLady PMRGCAuk volunteer in reply to ChoralG]

Sounds like it, so maybe an xray just to check... and if t is then try flexiseq - non-drug - bit expensive but can get it on special offer very often if it works-

flexiseq.com/

... and as said no rush to get off pred at such low doses, many on here would be very happy to be where you are after only 2 years..

[PMRpro Ambassador]

You aren't tapering relentlessly to zero - you are looking for the lowest dose that manages the symptoms. At this low a dose, it is pointless suffering, If 1mg is plenty - take 1mg, it is a very small dose but 1/2mg can be the difference between being fine and not. If the dose is too low it won't improve but get worse - and you might end up back at a much higher dose to sort it out. There is no virtue in being at 1/2mg if 1mg is enough - if you had to go back to 5mg it doesn't take very long to cancel out that perceived benefit of a lower dose.

[ChoralG in reply to PMRpro]

Thank you so much for that helpful advice. I think I am just so determined to get off the steroids that I have been ruthlessly going down a mg every four weeks. Tomorrow it’s back up to 1 mg again.

Thanks

G

[PMRpro Ambassador in reply to ChoralG]

You will get off the steroid when the PMR is gone altogether. When there is no longer a low level of disease activity creating a small amount of inflammation every morning. Before then, that tiny bit of inflammation not being cleared out regularly means that it mounts up - like a dripping tap eventually fills a bucket and it overflows however slowly that tap drips.

If you have managed 1mg every 4 weeks so far - you have been very very lucky. Very few do.

[borednow in reply to ChoralG]

At least, maybe higher. Be kind to yourself.

[paulus65 in reply to ChoralG]

I've been on pred for PMR for about 4 years now and have been following the discussions on this site with interest In general it seems that people who have most problems are those who are exactly following their doctors orders regarding tapering. Best bet might be to make sure you are always taking a little more - say 0.5 or 1mgs more than absolutly required - so you keep ahead of your PMR.

[Suffererc in reply to PMRpro]

don’t you wish GPs would stop pushing to get peeps off Pred so fast and learn by there mistakes.

Each surgery must have patients that have relapsed

[PMRpro Ambassador in reply to Suffererc]

Oh absolutely! And so do the really good rheumies - Sarah Mackie starts with a fairly standard approach but if it goes wrong, she changes it - and assumed all doctors will do the same! There are people who can reduce steadily to zero with no problems - I think usually people who were diagnosed within weeks. The immune system was only causing pain and havoc for a short time and that is more easily put behind you than when it has been entrenched for a long time.

She also tends to rely on pred first line - being aware that MTX works for only a small cohort of patients. More care and record keeping would be a great start to identifying what sort of patient does better with what approach.

[Suffererc in reply to PMRpro]

I had to wait 3 months until Rheumatologist appt b4 getting Pred.

The GP now retired said I don’t want to put you on steroids in case it isn’t PMR.

The Rheumatologist was shocked they hadn’t started me on Pred straight away.

I think I would have been one of the 2 year ones if the GP had started the Pred

[PMRpro Ambassador in reply to Suffererc]

They can't decide - half the time they complain about GPs getting it wrong! What they need is a fixed protocol of tests and examinations that the GP can do and a short appointment with a rheumy without waiting on the basis of those tests. One of the problems with recruitment of steroid-naive patients for research is that GPs have more often than not started patients on pred. I'm like you though - GP couldn't recognise PMR and didn't offer pred. For 5 years though! In general, 3 months is pretty short.

[piglette]

If it is PMR causing the pain trying to tough it out rarely works, PMR always wins. Personally I would increase by 5mg for a week. Hit the PMR on the head. You can then drop back down to say 1mg more than you are at the moment and see if you are OK, if so you can carry on reducing.