Nothing has changed much in 35 years

My aunt recently died and when my cousin, her daughter, was clearing out her stuff she found this article from Nursing Mirror 35 years ago...

Unknown to us it looks like she must have had PMR, and taken Pred too

[PMRpro Ambassador]

"Patients remain free of symptoms on 5-7.5mg."

They must have devalued the pred then!

[DorsetLady PMRGCAuk volunteer]

Hi,

The fact that we, or at least the medical profession, has not moved on over that period is very disappointing to say the least.

But as the age of patients and the length of time on steroids is a bit nearer the mark nowadays I suppose we should be grateful for small mercies!

[Hidden]

WOW!

[Soraya_PMR]

1983. Shame we’re still virtually in the same place.

If your aunt had it, it gives you the family connection.

I’m sure my Grandma had it, but just ‘rheumatics’ was her label. Will never know for sure, but this is a great clue for you.

[Rose54]

Thank you for sharing

Very interesting

[karools16]

That is so interesting, if not a little sad. 1957 it was thought steroids could be stopped in a year? Why is the time-span getting longer then?

[PMRpro Ambassador in reply to karools16]

There are still doctors who will tell you pred can be stopped within a year. And they do admit "although in others it may be continued indefinitely". So just mentioning the full range really.

[karools16 in reply to PMRpro]

I wonder how long indefinitely was in those days? I have a vague feeling my Neuro told me I would be off Pred in 1-3 years....12 years ago.

[PMRpro Ambassador in reply to karools16]

And they still haven't got the idea...

[Longtimer in reply to PMRpro]

This may be a silly question, but one wonders why the rheumatologists are all taught so differently........which then affects their patients. Obviously it's not only PMR where this happens, but..........can be so frustrating.......I

We have to remember also in the 50's patients thought the doctor's were Gods!.....they didn't challenge them like we do😏

[PMRpro Ambassador in reply to Longtimer]

A lot aren't really taught as such - and where they are, a class learns what their lecturer believes. And I suspect a lot of rheumies send their PMR patients back to the GP, if they ever see them in the first place. So their impression may be it doesn't last long and nothing ever teaches them the truth. I also believe a lot of patients are forced to stop pred but are too scared to tell the doctor they still have symptoms. If they do, they may be told "PMR doesn't last more than 2 years - so it must be something else" - and are given a fibromyalgia label, or something else.

[Longtimer in reply to PMRpro]

Yes, quite agree......how sad is that.......but glad at least some of us challenge them.......think my rheu my last week realised I was doing it my way anyway........when he praised me for being no longer pre diabetic.....I said no-one wants that or PMR.......I will do all I can to get off pred, but I'm not prepared to be in unbearable pain, I have a life to live........I couldn't imagine my mother-in-law ever saying that, her pussy bowed doctor was a god!

[Constance13 in reply to Longtimer]

Apart from a very few most of them still don’t know what it is all about.

As you say, we challenge them now but it doesn’t seem to have done much good.😏😏

[Longtimer in reply to Constance13]

Yes, you are right....sadly.....

I have always said...we are guinea pigs.....

[SheffieldJane]

What an interesting find. Like a message from her to say that she understood.

[Hidden]

We think she would have been 60 and her daughter was living out of the UK so probably the reason she didn’t tell her about it. Also 1983 was when her mother, my grandmother, died what a lot to cope with .... and without the help and support we have today.

[Marilyn1959]

How interesting! I don't think it is co-incidence that her Mum died in 1983. Bet the PMR started after the trauma of the death of her mother. Thanks for sharing.