So my GP organised for me to have a full set of blood tests, an MOT in her words. I got the results back and the only abnormal result was my CRP level was 29 (it was 23 two months ago). I’m still on 11mg of pred and struggling. I have an appointment to see my GP on the 7th to discuss the results, that’s going to be a short conversation!😂😂 Anyway my take away from this is at least everything else seems ok👍
well that's good if all others okay...be interesting to see her comments on rising CRP...
Yes I’m looking forward to our discussion especially when she says you need to see a rheumatologist!
At least you can match one with t'other! Will she though?
Sounds like you're not on enough Pred to control the daily inflammation so things are escalating
My CRP goes up and down, normally between 25 and 40 for no apparent reason. My GP says it is just me. Sometimes it goes over 100 and they panic!
Well, as the others say, it does sound like most of the other results are OK, so that’s good. Like you, just had bloods done and I have looked up the results. My CRP is 8 apparently, but my white blood cell count is quite high as it has been before, and that is apparently due to inflammation. I don’t know! All I know is I feel a lot worse than I did a couple of months ago when I was on7 mgs with the hope that I might get down to 5 in the autumn and stick there for the foreseeable. So, went back up to 10, not enough so am now up to 12 again.
Yesterday went to have my feet done having been dropped off right outside by my husband then we walked back to the M and S car park which is not very far at all and I could barely manage it. ( very interesting what PMRpro says about recent hardships for people doing any small distances of walking).
So, like you I shall have a consultation with my GP on Tuesday 7th , but by phone, to discuss blood results. Not sure what , if anything will come out of it, but, a bit like you, really have no confidence in what the rheumatologist might input, so definitely do NOT want to see her. Very much feel I am paddling around in water not really knowing what to do.
Like the idea of what Dorset Lady said about a regime set by a couple of people ( medics I guess) of sticking on 10 mgs for a year.
But it does sound like maybe you are not on quite enough at the moment along with everything else you are having to deal with.
Good luck when you see the GP, do let us know how you get on.
Oh dear it does sound like you’re having a worse time than me.
My body is telling me I’m not on enough pred but my head is stuck on I’ve got to get off this drug. Okay I’m achy crakey in the mornings and that does ease a bit during the day. However anything requiring movement lets me know that the PMR is still active. I guess like a lot on here we push though the pain or else our lives would be empty. Of course if I didn’t have this dam nerve damage around my right eye it would help. Trying to reduce the Pregablin and Amitripyline didn’t work and the nerves went into a frenzy! I still get periods of when the nerves jangle and I have to rub it. I’m B also wearing sunglasses from when I get up to when I go back to bed as it seems to help.
Good luck to you as well when you speak to the doctor on the 7th. It’s not Dr Fell by any chance as that’s who I’m seeing?
It’s in here -Table 2 -although the tapering around may be a bit optimistic- still based on the PMR only lasts 2years theory 😊
rcpe.ac.uk/sites/default/fi...
Oh thank you very much Dorset Lady. I will have a good read of it a bit later. Off to have my afternoon nap now and my brain needs to work a bit better! Look forward to reading it.
You are kind. But I’m sure you have got more pain etc to contend with what with the ghastly residual stuff having shingles has left you with, than I have.I was thinking , yes, gradually get down on the Pred dose so that I get to 5 mgs in the autumn, but my body has obviously said “ stuff that”! I expect like you, sometimes it all just gets too flipping much! Most of the time I accept what’s going on, but sometimes, like most of the time sad to say, I just despair at how little I am able to do. Have had to cancel the very few social things like meeting for coffee with friends.
It’s also hard isn’t it, when you know you want to reduce the medication you are on ( with all their side effects etc) but as you have found, you can’t.
Gosh, that’s hard having to wear sunglasses all the time. But obviously it helps and that’s what you need, lots of help.
Well, yes, I do see and have phone consultations with Dr Fell who is very lovely but I’m not sure is quite “ with it “ regarding what we have. She does her best! I do miss Dr Schuh who was such a supportive chap.
Anyway, good luck and do keep in touch and let us know how you get on and what other help you are able to get.
Blood test results - round 2
Cortisol serum blood test results, are they normal? 
Blood Test Results
PMR blood test results due tomorrow 
