Up-and-down symptoms...

[billinSurbiton]

Hi All... happy Tuesday.

I'm new, have not posted much, but this morning I'm laying here unable to walk. My legs are too stiff, painful, and often just give out, leaving me to collapse on the floor. I was like this at Christmas time, and my GP named PMR as a working diagnosis; my family is rife with all manner of autoimmune issues. When I started Prednisolone, most symptoms abated, and so I thought this would be brought under control, but it seems to wax and wane without rhyme or reason. Have any of you fund this to be the case for you?

fyi dose is 10mg daily, after an initial week of 30 mg.

THANKS for your help.

[DorsetLady PMRGCAuk volunteer]

Hi bill.....

Welcome,

Would say that 30mg is quite a high starting dose for PMR, usual is between 12-25mg - any particular reason for that?

The original dose usually is higher than you need just to get a grip of the accumulated inflammation, then you reduce slowly to find the dose YOU actually need on a day to day basis.

A week on initial dose is not really long enough, a month is better, but I guess the GP thought a week at 30mg would probably be enough.

How have you got down to 10mg, if too quickly then you’ve gone below the level of Pred you actually need.

You also have to remember that Pred only controls the inflammation not the PMR itself - that’s still there, so you need to adjust your life according. I would say you are trying to do too much, and of course working doesn’t help. That’s probably why it’s waxing and waning...on a good day you do too much, then you get a bad day following!

Have a look at this

healthunlocked.com/pmrgcauk...

[SheffieldJane]

If your doctor is fairly sure of your PMR diagnosis I would argue that 10 mgs is just too low a dose to get on top of the inflammation. It is more usual to start at around 20 mgs - stay there for several weeks until everything has settled and then start a very slow taper down by about 1 mg per month initially. I don’t think that I would have responded well to a high dose zap and then a steep drop of 20 mgs. I do not recognise his prescribing protocol from anything I have read. Perhaps you need another opinion. The collapse you describe is very concerning and to my knowledge not typical of PMR.

[Soraya_PMR]

That’s not a taper (30mg for 1 week, Plummetting to 10mg) that’s a disaster.

Ask your GP to read the guidelines!

Would probably be sensible to go to 20mg for about 3-4 weeks, then 17.5 for 3-4 then 15 for 3-4 then take stock.

Yes you’re feeling rubbish, but that’s due to mismanagement pure and simple.

[Lee1945 in reply to Soraya_PMR]

I actually phoned my rheumatologist when my GP wanted to reduce my pred more quickly. He thanked me for sticking to the prescriptions he had given me and not what my GP wanted

[PMRpro Ambassador]

"fyi dose is 10mg daily, after an initial week of 30 mg."

Really NOT the way to go about managing PMR. You should have been started at 15-20mg - if that was enough, all well and good. 30mg is a bit high. Then you should have been left at 20mg for about a month. Then reduced perhaps 2.5mg to 17.5mg, another month. 10mg is a far too precipitate drop this early.

Maybe this

rcpe.ac.uk/sites/default/fi...

would help your GP - it is aimed at GPs to help them manage PMR better. Kirwan and co used 15mg but the most recent guidelines suggest starting with "the lowest effective dose in the range 12-5-25mg". Never below 12.5mg.

rheumatology.org/Portals/0/...

I do realise being a GP is a pretty thankless task - but they do need to know the most recent advice from the experts.

[Lee1945]

I was started on 40 mg and am now down to 30 mg. On Tuesday, there will be another reduction and so far all is going well