long term PMR

[dipalog]

I was diagnosed with PMR at 39 years and given steroids. That’s 40 years ago

Back then I saw a rheumatologist regularly for the first couple of years which eventually stoped

We moved up north where the Dr always said to regulate my steroids as I knew more about it that he did so every time I had a flare up he would say go up o your steroids

I was stated on 60 mg. But found I could o let go down half a mg each 3 weeks

40 years later and still struggling with steroids now on10 mg per day after shoulder and knees replacement s

I have asked to see a rheumatologist again

I received a letter yesterday saying it’s a 68 week waiting list

Has anyone else experienced this

[PMRpro Ambassador]

Probably - though whether it is as much as 68 weeks I don't know. In N.I, the wait is over 2 years I believe.

Have you had PMR symptoms the entire time? Things 40 year ago were rather different and had you been under a rheumy all that time you would have been on a different drug long ago to try and reduce the pred dose. And a lot of investigations done to see if it is something else. I'm not denying it IS PMR by the way - I've had it for 18 years as well.

[dipalog in reply to PMRpro]

my eldest daughter 56 y also hasPMR my youngest daughter 53 y has rheumatoid arthritis so I had asked to see a rheumatologist for test to see if it could be something else

Last year i August I was told that my shoulder replacement was urgent and that it would be done in 3 weeks I’m still waiting

Sorry you have had it so long to

Thank you for your message

Grace

[piglette]

I heard it was four years in Northern Ireland!

[PMRpro Ambassador in reply to piglette]

Could well be - that's over 2 years

[piglette in reply to PMRpro]

Someone did say it was 18 years for a hip replacement in Northern Ireland!

[PMRpro Ambassador in reply to piglette]

You have to be kidding!!!! I wonder if it will ever be safe for me to come back to the UK!!!!!!

[piglette in reply to PMRpro]

I must admit I am driving very carefully nowadays!

[PMRpro Ambassador in reply to piglette]

It's not me I worry about - it's the other clowns on the road!

[piglette in reply to PMRpro]

That is true. Recently people have become complete idiots its seems.

[PMRpro Ambassador in reply to piglette]

You'd have thought they'd have learned to drive again by now. Just after lockdown it was horrendous!!!

[piglette in reply to PMRpro]

I think they are getting worse. Perhaps it is the mulled wine!

[PMRpro Ambassador in reply to piglette]

No - think they have improved a bit here. But they had an excuse today - an inch or so of snow when I went out. It took me two goes to get out of the garage - the Hausmeister hadn't cleared the ramp and I didn't use a high enough gear first time. SOme people have even steeper ramps than ours - lord knows how they manage.

[piglette in reply to PMRpro]

So snow is better than mulled wine!!

[PMRpro Ambassador in reply to piglette]

It's the excuse for a Gluehwein ...

[piglette in reply to PMRpro]

jawohl!