PMRGCAuk
7,070 members11,245 posts

I don’t have to eat my hat!

I think I said I’d do that if I was osteoporotic.

Saw consultant today and my T scores are 0 and 0.5 (spine/hip). So that’s my answer to the AAcid sorted 😀

Blood tests all normal, CRP less than 1. ESR 8 I think she said. Which is fine and dandy, as ‘the steroids have inflammation under control’.

We went through my records of pred dose, she agrees at 10mg I had a flare, via 15 now at 12. She told me to SLOW DOWN! 1mg per month, no faster, some people just can’t reduce as fast. (All my own fault NEEDING to get to 10, half of my starting dose!) Methotrexate was mentioned IF I can’t get lower, but she already guessed my reaction to that without asking.

On the down side I showed her my BP readings which vary from left to right arm, and she’s sending me for an urgent CT with contrast to check my aorta and arteries. Repeat ANA, ANCA and immunoglobulin today. Also a C3 and C4, shall have to look those ones up unless anyone can enlighten me? I know I had ANA, IG and rheum factor done in September, so assume they were OK then. So I shan’t panic, this seems like a responsible thing to check. She also asked about any GCA symptoms, fleeting temple pain and jaw stiffness, but not for months, no crashing headaches, so fingers crossed.

Oh and in passing she said that PMR is the mild end of the vasculitis spectrum, so all in all I’m impressed with her knowledge and attitude. Poor love did seem to be somewhat stressed/hurried, but did ask if I had anything else to ask her. No registrar working with her.

Back again in 4 months. Now to de stress!

7 Replies
oldestnewest

That all sounds pretty positive Soraya. My blood pressure readings also had different readings of more than 10 points between the left and right arm. I was sent for an ultrasound test to look at my veins and arteries. The technician concentrated...

Reply

C3 and C4 are complement tests:

labtestsonline.org/understa...

Slow down????? Hallelujah! Who and where?

All sounds good. Four months is fair enough.

What a shame - you eating your hat might have been...

2 likes
Reply

Who do think you are - Carmen Miranda! Might be quite a tasty hat! 🍒🍇🍓🍊🥝👒

Reply

Tasty it might be, but I shall first have to check the carbohydrate content 😉

3 likes
Reply

I object to being told that I can’t have a banana when I haven’t dealt with cake yet.😤

I don’t think Pred deals with the flu type symptoms and the exhaustion of the autoimmune disease. It is just good at the pain and stiffness. I think that’s why we don’t feel that great even though inflammation levels have normalised. Or that’s how I rationalise feeling like er not good.

1 like
Reply

My diabetes nurse has said some fruit fine but must confess I try not to have bananas as they seem to mess me up. People tend not to.worty about cow's milk but I have used it to tackle hypo in past and worked quicker and better than glucose for some reason.

Reply

Thanks for the tips!

Reply

You may also like...