Just a quick update and a huge thank you to all who have supported and encouraged me during my recent trials and tribulations.
I spoke to the Rheumy again this morning, he has told me to go straight to 60mg of Pred for a week, I'm to then call him again to update on symptoms/progress. To be honest I just feel mightily relieved, kindest regards, Mike
Result! Though why isn't he seeing you sooner?
I did chase up that appointment with DR Sam when I left a message asking Dr Khan to ring me back this morning, his secretary seemed hopeful it would be soon. Dr Khan did ask when I was next seeing him, I said he had mentioned 3 months but haven't had it confirmed yet. It struck me today, I had bloods taken in Feb when this all kicked off with PMR flair? when I went to hospital in May with GCA symptoms they said they wouldn't take bloods as I was now on Pred and my last bloods showed no markers. When I saw the Rheumy early this month he too said he wouldn't take bloods as they had been done in Feb. I suppose just because they were normal with PMR they could have been through the roof with GCA?
You will never know - I'm slightly appalled at their rather cavalier attitude!
By the way - someone has just said somewhere that her bloods were checked 3 months and 6 months into the PMR symptoms and were normal. Then they shot up...
I'm due to see my GP tomorrow, will ask about having regular blood checks. Am I right in thinking these should be done as part of the monitoring process?
Depends - wasn't much point for me as mine never did anything much - ESR never got to double figures originally so no-one was interested. We did discover a few months ago that while I was in hospital 5 years ago it shot up to the dizzy heights of 16-18 and hovered there for several weeks at least. But no-one commented then - it was still normal range!
On the other hand - they need keeping an eye on if they were raised to see that the ESR and CRP are falling with the pred. A lot of people get them checked before a reduction - and only if they are at least stable do they then reduce.
You also need BP checked and Hba1c (to see how your blood sugar is doing), as well as electrolytes and a few other basic tests done every 3 months or so. More often probably isn't necessary. OTOH - if the ESR and CRP are noticed to be rising, stop reducing and check in a week or two to see if there is a trend. Don't go back up on the dose unless that trend is rising or you have symptoms - lots of things will make ESR and CRP go up, not just PMR and GCA.
I have PMR and CRP every three to six months, but of a waste of time, but can be useful. I also have HBA1c once a year along with Vit D. U&E every six months or so along with Full Blood Count, liver function test and folates. I have had iron checks as it was found that I was anaemic when I was in hospital and I had to have a blood transfusion. I have had Dexascan four years ago and should be having another one soon although my rheumie said it was a waste of time.
Good, but same question as PMRpro!
Ohhhhh Mike1964, I hope this increase helps you... Let us know how you get on! Good luck!!!! xxxx
Hi mamici1 Thank you and will do. Hope things have settled down for you a bit? I wanted to send you a good luck message the other day, guess I was late looking because when I did you already had about 60 reply's, thought you would have writers cramp replying to them all 
One of the small pleasures I have in my life is reading and responding to messages and well wishes on this site!!!!! Thank you! xxx
Mike I get bloods done all the time. I have no inflammatory markers but my symptoms are so odd. Good luck x
Hi Mike, any update?
Hi Kate. Well! I ended up staying on 60mg for 2 weeks. Pain in eyes, jaw and ears didn't change. I updated Rheumy by phone weekly, after the 2 weeks he had me reduce to 40mg for a week then 20mg, I saw him again on Friday (Yesterday). Sadly Fridays 5 minute appointment wasn't overly productive, I foolishly thought we would sit and talk and try to find out what was going on. Dr Khan said I obviously didn't have GCA, he then told me 3 times in 5 minutes that I had led him along this path. Have calmed down a bit now but to be honest was pretty upset yesterday. All I did was tell him my symptoms! when I asked what I should do as I still have them he said "I don't know whats wrong with you" I guess the good news is he's going to see me again in 3 weeks time so at least I've got something to look forward too at least I can laugh now.
GCA flare
update since GCA relapse after pausing Actemra
gca symptoms
GCA Update 
