Heart problems

My  husband comes and has complete faith in whatever they say! Not very helpful as he only argues with me! The last nurse had never heard of GCA/PMR and wrote RA on my notes for the anaesthetist! I had to scribble over it on the trolley! My faith is little! I will keep fighting to be heard! Thank you for your support.

I was castigated by a gentleman on another forum for daring to suggest someone should question their medication or change the way they were reducing their pred dose. He told us it was wrong, he would NEVER not take take something his doctors had told him to take, after all they have the qualifications! There was an avalanche of posts in reply from women who, like me, have been made very ill by medication given them and who, as a result check VERY carefully. 

I'm sorry your husband has such blind faith. I'm not in any way saying all healthcare staff are hopeless, of course many aren't, but there are a lot who are arrogant enough to think themselves above the patient and that they know it all. GCA is rare, PMR is not, it is the most common rheumatic disorder in over 50s so for a nurse to dispute with a patient what her diagnosis is is appalling. 

The people who count are the surgeon and the anaesthetist. Do you have a friend who will come with you who WILL fight your corner and not argue with you. My husband isn't a lot of use despite having been a clinical scientist for years but at least he doesn't argue with me on somehting like that. I wonder if PALS might be some help?

To be fair to the nurse in question I think it was a genuine mistake. I also  think it was her first catheter. She was shaking more than me and eventually got the sister to do it! I don't think it is fair to young inexperienced staff to be left to struggle on their own. I have considered PALS and need to find the energy to go to see them! 

Surgeon has booked me for new procedure surgery in October provided all is clear with angiogram, CT Scan, Lung function etc. This morning I phoned for blood test results from GP practice and CRP is slightly raised. GP left message to continue at present dose and have another blood test in a month. Am reducing very slowly and at 11mg/12mg. Please give your opinion!

Stick where you are I think. It all depends on the surgeon really - he's obviously happy to work on you while still taking pred, I'm really not sure that 1 or 2 mg will make that much difference to him but he is the only person who can answer that. Usually it is better to operate on someone on the dose of pred that keeps them stable than someone who is wobbly because they are forcing a reduction.

You have been very stressed haven't you - that always has a bad effect on PMR, not sure about GCA. This is a bit of a turn around from your GP though isn't it? Thought he was the one desperate to get you down to 5mg! Seems he's learning - and you did say you were struggling. 

Yes. I did feel things were not going too well but never sure if PMR or withdrawal - same as everyone - its such a dilemma! I also think you are right about the stress making things worse. Do you think sticking at 12 mg will keep inflammation at bay? Thank you so much for your help and advice.

I honestly don't know - you can but try.

Thank you