My ten years on the Forum - again.

[Charlie1boy]

Looking back at the similarities of posts ten years ago compared to today, I continue to keep reading “my Rheumatologist/GP wants me off steroids as soon as possible”, or “reduce by x ( more than 10%) after two weeks” of starting. These are just two fairly obvious and frequent examples.

I despair that in some quarters, we seem to have made so little progress, over the last ten years, in the profession of how PMR or GCA should be treated . Also that so many of those who post say how much they rely almost totally on this Forum to manage any sort of day to day quality of life. It shouldn’t have to be like that.

I’m sure that we don’t see the full picture on the Forum, and that there are many who do not have too many issues with these conditions; also that there are many excellent Rheumatologists and G Ps. However, there are lots of patients who appear to be suffering unnecessarily because of a lack of knowledge.

I am aware that we will, hopefully, have new guidelines for PMR treatment fairly soon, but it is frustrating that so many patients have to suffer unnecessarily. I am aware, too, that the Charity is doing its best to get the message through.

For the time being though, all can say is “Thank goodness for the Forum”.

PS: I was in Boots last week for an eye test, and the person who was taking a fitting for new glasses had never heard of GCA. She’d been there for three years.

I’ll stop my rant now!

[DorsetLady PMRGCAuk volunteer]

You are correct on many points.. and for sure the whole Covid issue hasn’t helped in the communication between many patients and medics. But there are many good ones out there, which of course we don’t hear as much about as the not so good ones.. but such is life.

[Satya70]

I finally quit going to rheumatologists. What’s the point?

[Charlie1boy in reply to Satya70]

Understandable

[PMRpro Ambassador in reply to Satya70]

Depends - Mine here is amazing and he's part of the reason I don't want to go back to the UK!!! On the other hand - I know several superb rheumies in the UK as well, just not where I would need them!!!!

[Charlie1boy in reply to PMRpro]

Seems you can be lucky or unlucky depending where you live. The postcode lottery again!

[Satya70 in reply to PMRpro]

I’ve gone to 4 different rheumatologists in 2 1/2 years. They mostly say amen to whatever I read here and want to try. No medical advice to offer at all.

[PMRpro Ambassador in reply to Satya70]

Which is more a reflection that there isn't a lot to offer - they are a bit restricted!

[piglette in reply to Satya70]

I have had three rheumatologists who were a waste of space, however the fourth got me on the list to have my hip replaced which is more than my GP managed to do.

[Satya70 in reply to piglette]

and my first diagnosed PMR and got me on prednisone…so that was good.

[Angelsmummy]

Broad range of comments C and totally agree with a great many of them.As you say,there are a lot of professionals who are not equipped with the extensive info that we can glean from our forum.They say” ignorance is bliss” but not in our situations eh?x😜

[Jackoh]

You and me both Paddy!!!

[Rubha]

Unbelievable.....the optician had not heard of GCA.....feel free to rant...We'll all join you. ! Fortunately i have an excellent optician who HAS heard of it 😀

[PMRpro Ambassador in reply to Rubha]

However - it WAS the salesperson fitting the frames so I doubt GCA figured too highly in her training. If the person doing the testing hadn't heard I would worry.

[piglette in reply to Rubha]

The person fitting the frames could not have been an optician. Opticians are normally much more conversant with GCA than doctors.

[Charlie1boy in reply to piglette]

Yes, you are correct.