Another frustrating Rheumatology visit!!

i had a useless rheumy so after the first couple of visits the gp and i decided to manage the pmr ourselves ,so i have monthly bloods and try and reduce1/2 mg a month which apart from one hitch i am managing to do its not easy i get good and bad days but compared to where i was a year ago there is no comparison .you only have to go on the other website forum to see there is a wide spectrum of ages so your rheumy is talking rubbish .nearly there is just not true dropping below 5mg is the most difficult period of the lot because the adrenals are trying to kick in again its a known fact that you should stay on 5mgs for a few months then very slowly reduce even trying 5mg /4mg alternate days for a while this is the trickiest reduction and its slow progress or you will end up going back up .some people never get below 5 mg and take that as there maintenance dose but its worth trying to get down but have the patience of a saint you will need it carolk

Hi Carol.

yes I'm reducing by a quarter mg every 3wks at the moment, but may go even slower if and when I reach 3!

Cheers,

Molly.

Mollycoo

PMR has a mind of its own, it comes when it wants, it flares when it wants and it goes into remission when it wants.

The pred is to make your life livable, albeit differently. There is no race to come off the pred unless the PMR has gone into remission. As long as each reduction does not mean an increase in pain, then continue slowly down.

Whoever your 'big man' is he has not read the BSR Guidelines on the Diagnosis and Treatment of PMR. It is on there website if you want to read up on it.

Mrs K,

but he is saying that it's not PMR! It would be lovely to get a definite diagnosis from someone, but that's impossible it seems!!--- very frustrating!

Molly.

this is part of the problem there is no test that says youhave got pmr what you get is symptoms that of a certain pattern and usually raised inflammatory markers eg your esr or crp ,then they put you on steroids if you improve they consider that as conclusive as it can be that its pmr .i did not improve as dramatically as some so i was tested for other things but nothing else showed up so they have gone down the pmr road. i decided that no one was going to give me a certificate saying congratulations you have pmr ,so as its life changing rather than life threatening i just plod on reducing the steroids hoping at the end i will go into remission for a hundred years !!!!carolk

Hi again,

yes I was slow to react to the Prednisolone in the beginning----hence the diagnosis doubt at first, but I wasn't tested for anything else! I'm fully convinced that I do have PMR, I have the classic symptoms.

Cheers,

Molly.

Frankly mollycoo, does it actually MATTER whether it is PMR or another label if you have classical symptoms that are made better, albeit slowly at first, by what is now a low dose of pred? If the pred made life livable and no pred left you in pain then you needed some pred. Even if it is late onset RA, the first approach is using pred and if he can't come up with another good reason for saying it is something else (like a diagnosis) then you are better off without him.

However - if his primary reasoning for it not being PMR is you are too young - what a clown!! The AVERAGE age of patients at diagnosis is 73 or so. Since there are a hell of a lot of patients over 73 that also means there must be quite a few under that age (50% of over 80 year-olds have PMR). We'll give him a resounding "fail" on maths shall we?

I had a nut like that - wanted it to be anything but PMR and I did react like magic to 15mg pred although I was only 57 at the time and it had started years before but mildly. Each time his fancy dx was thrown out by the tests he found another one. Then wanted to put me on a foul old drug where you can't go out in the sun! Excuse me, I spend most of my time around the Mediterranean???? We were back in the UK for 10 days for our daughter's wedding, just got backhome - the week of non-stop rain and wind was good enough reason not to move back!

Eileen

Hi Eileen,

thanks for your reply. Think I may stick at 3.5 mg for a bit, I've tried to go slowly lower but the pain increased.

Hope the wedding went well, and it didn't rain on that particular day!

Cheers,

Molly.

3.5mg is a low dose so dont rush to go lower carolk

Mollycoo - the wedding went very well and it was a beautiful day, not a cloud in the sky! There was, however, a gale blowing that made pictures outside the church pretty much impossible! Hardly surprising since it is on top of the cliffs at Sandsend, along the coast from Whitby! Even the vicar said at the rehearsal that it was the coldest of his churches - now you tell us! The fact everyone arrived early at the reception as a result didn't seem to bother them - they all headed for the bar ;-) - and the landlady was delighted!

It was below this sort of dose where you are now that Ragnar the Swedish gentleman had problems and developed his tiny tiny step reduction plan. If you are having more pain - the underlying disease is still there. About a quarter of patients need to stay at this sort of level for months and months before reducing, some remain on a dose like this for years, even for life. Some experts think it may be that the adrenal glands aren't quite up to snuff and it needs a sort of replacement therapy to deal with the problem - they can maybe produce some cortisol but not quite enough to deal with everything. Don't force it - you might have a bigger relapse if you do and as Carol says - 3.5mg is a tiny dose with very few side-effects.

Eileen

I have been diagnosed at the age of 39! Hope you have got an answer by now!

I have been diagnosed at the age of 39! Hope you have got an answer by now!

Hi sarah8 - I've answered your other post under it's own heading.