Another frustrating Rheumatology visit!!
Posted , 5 users are following.
Had a rheumy appointment this morning, and saw the top man himself who still doesn't accept after 2 years that what I have is PMR. He still insists that I'm too young at 68, and when I said I spoke to people on the internet in their 50's who had it, he said they have probably been misdiagnosed!!! I'm down to 3.5 prednisolone, after being down to 2, and going up to 5mg because of a flare. He's signed me off, saying "I'm nearly there" whatever that means, and I'm not sorry, in my opinion it's been a complete waste of time going to see him, I get far more sense from my GP. He doesn't come up with an alternative if it isn't PMR, and just says it could be any number of things including disc trouble!! At each visit I've waited an hour past my appointment time to be seen too, so am quite pleased that I shall not be going again!!
a fairly frustrated Molly!!
0 likes, 13 replies
carolk
Posted
mollycoo
Posted
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.
mrs_k
Posted
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.
mollycoo
Posted
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.
carolk
Posted
mollycoo
Posted
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.
EileenH
Posted
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
mollycoo
Posted
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.
carolk
Posted
EileenH
Posted
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
sarah8
Posted
sarah8
Posted
MrsO-UK_Surrey
Posted