Just joined!

[MamaBeagle]

Diagnosed with PMR in late September 2017 when I eas still living in France. It was a shock to say the least but the pred worked its magic on what had been excruciating hip pain of rapid onset. The regime there was 2mg of pred per kilo of weight. I weighed in a 56kg and nearest dose was 30mg. Now jut dropped down from 4 to 3 and woke this morning with discomfort in both knees. I googled this and happened upon thi website. I think zI have been lucky so far as have ad an easy ride down the doses compared to many of the contributions on here. My French gp told me that at the end of the treatment I would be cured! He added there was a "leetle posseebilitee thet it could come back" I live in hope but after reading some threads on here I'm not convinced.....

[Hidden]

Welcome mamabeagle

You have done well to get down so fast without a flare. What the Dr should have said is that he might have you reduce so fast that the PMR would still be active so you could end up back in double figures. It sounds like your body is trying to tell you something. Go back to effective dose and sit there until the symptoms settle.

Thank goodness pred not given on weight here in the UK otherwise I would be a wheel barrow to get my prescription!

I am sure you have seen the threads where the 2 year minimum for active PMR with up to 6years for many and life for a few. The first 12months seems to be important as many experience a flare in first 12months due to fast taper. I hope you are an exception to the rule. Symptoms rule here. 🌻

--------_-----------

DX June 2016

Pred 8mg (second time)

Plus 2g mycophenolate (dmard)

[MamaBeagle in reply to Hidden]

Thanx Poopadoop, i di 30 20 10 then down by 1mg a month from then on. I drink loads of water and do lots of wslking the beagles so am keeping positive. My body does notice when I drp the dose and generally settles down in a couple of days. That's been the experience so far. Evrrything crossed. Am off to Italy for a week butb taking an exta packet of pills......just in case!

[Hidden in reply to MamaBeagle]

Always good to carry extra. Have a good time.

That us a speedy taper so I will cross my fingers.

[MamaBeagle in reply to Hidden]

I was diagnosed really early. So wondering if that makes a difference in how effectve the treatment is? I'm a believer in pain isn't natural. And because i couldn't account for the incredible pain arriving so quickly i was diagnosed within 2 weeks.....and straight on the preds after having the blood tests and even before results arrived...just a thought.

[Hidden in reply to MamaBeagle]

Yes the higher dose may have helped too. Usually 15mg normal dose for PMR going up to 25mg.

[Marilyn1959 in reply to Hidden]

The thought of you with a wheelbarrow of pred has had me in fits of laughter!!!!! Long may the humour reign!!

[PMRpro Ambassador]

Can't remember the figure for people who get it a second time - maybe 10%? It isn't that high. It is difficult to tell from the literature because doctors often don't differentiate between relapses due to tapering too fast (oh so common) and recurrences after some time off treatment of any sort.

academic.oup.com/rheumatolo...

A few people have a theory that starting with ahigher dose of pred helps - though since it doesn't have any effect on the actual disease process there is no real reason why it should.

[DorsetLady PMRGCAuk volunteer]

Hi,

What your GP doesn’t understand - “at the end of the treatment your PMR will be cured” . No it won’t, what you hope is that by tapering at the right speed your PMR will also be in remission when you get to zero Pred! Unfortunately that doesn’t very often happen in the real world!

There is no cure per se for PMR or GCA, all the Pred does is control the inflammation caused by the illness, it does nothing for the illness itself. That seemingly comes when it wants, hangs around for a while, and then goes when it wants! Lot of doctors don’t get that!

No one can tell you how long the condition will last - anything between 2 to 6 years, sometimes longer. But you will be very unlucky if it does comes back, as PMRpro says the numbers are low. You just need to make sure it’s gone in the first place!

[MamaBeagle in reply to DorsetLady]

Thanks for that useful info. 🙂