Here we go again!

[Duddy999]

I was diagnosed with PMR in 2014, after months of pain. The proof needed was the usual blood test and the immediate relief from the pred. Sorted! If only, i was 43.

The following 2 years i reduced my pred following the advise in my Bible ( Kates book). My GP was been brilliant throughout.

Finally came off the pred, pain free and feeling normal again. This was to last just 6 weeks! Huge flare and back to the start with 20 mg pred.

At this point my GP wanted me to see a Rhumy. Luckily, i have Benenden membership through my job, so received an appointment within weeks.

I was happy i as going to get some answers. Well, before i had sat down the very rude lady said, you havent got PMR. Ok, what have i got then? I dont know! I left her consulting room with the advise to find a pilates class, after failing to touch my toes, and being very stiff. There is a class twice a week in the village hall, which is at the end of my garden, if only i could walk that far to get there.

She eventually referred me back to the NHS. Where I saw a lovely man, who took the time to read my notes, examine me fully, and listen to me. They do exist! Just a shame he was a locum. Anyway he said in his humble opinion it was PMR, A-typical due to my age.

Next appointment, new face, but still agreed with diagnosis and was happy to put me on Methetraxate.

Fast forward 18 months. I have reduced the pred to 5, but cant go lower. My GP, has been monitoring me, but says its time to go back to see a Rhumy.

So, here we are, this week. A new consultant. First question, how old are you? 48 now, first diagnosed at 43.

You havent got PMR. Here we go again!

So she wants blood tests and an MRI, to find out what i do have.

For now i shall carry on as i have been,and wait for her decision.

I would have been lost without Kate Gilberts book. The nurse commented i knew alot about PMR. I told her about PMRGCAuk, and last years members day, where i met other younger members.

I apologise for the essay. I just hope my experience might help another youngster, who hits the same problems with diagnosis.!!

[Hidden]

Thank You for Posting! I do hope they have some answers for you, please let us know.

Why they are always dismissive of age is very annoying!

[Duddy999 in reply to Hidden]

Thank you x

[jinasc]

It sounds as though your 'age' is getting in the way.............they should know how stats work with the 'bell curve' - years ago PMRpro taught me about stats I had never quite understood it. So although the median range can be 50 onwards, that 50 is nearly at the n top of the bell curve and people fall down on either side.

As you seem to have a supportive GP, ask him to arrange a Synacthen test and see if your adrenals are waking up or still sleeping. 5mg is a good time to take the test. If you remember, you are told to carry your Blue Steroid alert card for one year after you stop taking pred. This is because it can take up to two (as I understand it) for your adrenal glands to become fully functional.

Methotextrate is a steroid sparing agent not a cure - 18 months and down to 5mg is not long, the batting average says 1-2 years, but you are well aware that most people seem to take longer.

Yes, it went into remission, in the classic time first time around, but it is only remission as currently we do not have a cause or cure ................PMR has a mind of its own and it comes when it wants and goes when it wants and that is extremely.

Finally I do know people who have had it twice and then it has gone into remission and not come back to date and I am talking years.

I only wish that, apart from your GP and that one locum, you had come across understanding Consultants. I wish you well in this second journey you really did not want or deserve.

[Duddy999 in reply to jinasc]

Thank you x

[PMRpro Ambassador]

Are all the ignoramuses basing their objections on age? Or duration?

Look at the post I have just put up about Eric Matteson, listen to the video and take it to your GP. Your first flare was absolutely typical of someone who would have been fine on as little at 1mg - you stopped and in a few weeks the inflammation built up again. It is quite common. And Eric points out some people take 9 years - or more. I was a relatively young onset PMR - and I still have it 15 years later after 9+ years of pred. Every few years it flares - not because of reducing, just increase in disease activity.

Maybe you need another rheumy - maybe you don't. But you want one like the two you saw who weren't wearing blinkers. Is private an option? And where are you?

[Duddy999]

Age always!

[PMRpro Ambassador in reply to Duddy999]

Maybe it was, maybe it wasn't but the youngest recorded case was in a 24 year old:

thefreelibrary.com/A+24-yea...

Ask them about GCA - I bet they will say the same about age. There is a confirmed case in a 37 year old male, confirmed by the pathologist who always gets it right:

walesonline.co.uk/news/wale...

It is rare but it does happen. And only a very silly doctor would say it doesn't - because no-one knows.

[Thelmarina]

Not a lot to add, except that to create an average there has to be an arc from the starting to the ending points, with average nicely central. It sounds as if you are at the beginning of the arc, so your GP should be looking at that not forcing you to conform to average. Good luck! 😀

[Hidden in reply to Thelmarina]

You would think it was easier to change a line of thinking than the presentation of an illness.

Pun intended.