First visit to rheumatologist today.

[Pamela60]

Well first visit done,

Consultant very nice and thorough, she is as I speak trying to arrange an emergency TAB for tomorrow . Yikes, I'm off to Spain on Saturday so she thought she'd try.

Going for a really slow reduction - from tomorrow 40mg for about 6 weeks then 30mg the same till 20mg then even slower.

She was more interested in my Crp than esr but unfortunately I did not have that done at my own surgery for some reason?

Caliche with as well - I'm already rattling with the amount of pills !

Side effects starting to kick in :-

Palpitations, hunger, eyes dry, weepy.

Pamela

It begins - how does everyone deal with it.

My family say I look well - I don't feel it on the inside .

[olive2709]

You are allowed to kick,scream ,use bad language. Ask any questions on here no matter how daft you feel it is.you will be ok

[PMRpro Ambassador]

Don't let them get away with it - you may look well, remind them it's the pred!

I suspect many doctors are not as clued up as they might be about the difference in significance between CRP and ESR. There isn't really that much difference but CRP is less affected by other illness (colds and stuff) or how the bottle of blood is treated before being tested. On the whole it doesn't make that much difference really though. For some of us there is no difference at all - both normal, even when I couldn't move...

And the rest, as Olive says - shout at us!

[Polywotsit PMRGCAuk team member]

You need to tell your family that you have a really serious illness. The steroids work like a sponge mopping up the inflammation in your body, but the underlying condition is still there. So you are allowed to have a cry, and it might not just be the steroids.

[DorsetLady PMRGCAuk volunteer]

Hi Pamela,

Your last sentence says it all! We've all said the same thing on this forum.

Get Kate Gilberts book, if you haven't already, and once you've read it, then get your nearest and dearest to as well. It may give them a bit of an insight to your problems.

As Kate says in her reply, you have a serious illness, but because people don't see you looking any different they find it difficult to comprehend- If you had a broken leg they'd be sympathic.

Take care, and feel free to let off steam on this forum anytime!

[rosalinda]

When I was first diagnosed (PMR at that stage) I looked OK but my husband didn't understand until I found this forum and he read a few posts and he realised I actually had an illness with all the tiredness and exhaustion and he could appreciate that sometimes I couldn't do what I used to get done.

[HeronNS in reply to rosalinda]

Rosalinda, my hubby is the reason I bought a medical alert bracelet. I am not sure he has yet understood the gravity of a disease that requires prednisone as the treatment. Oddly he also seems to be doing even less around the house....

[Nruble]

This is my first time posting. Your last sentence moved me to share this wonderfully helpful spoon theory. I sent it to everyone close to me so they could better understand my situation. Here is the link. butyoudontlooksick.com/arti...