Hi Everyone,
Well, that dripping tap must have got me, finally!! No symptoms but a routine Rheumy appt preceded by the usual blood tests revealed that my CRP is over 100 😱 and my ESR is 80 something. But I feel no pain, except for the usual little niggles that I thought came with being nearly 70. So … back on 15mgs pred (she wanted to go higher), while I wait for a PET scan appt. Bugger!! Traipsed all over Greece for 4 weeks … welcome home!!
No symptoms would make me wonder if something else had raised my CRP levels. Anything can, even on ordinary cold. Even you’re hiking in the heat of Greece. Unnecessary Pred is to be avoided. Best wishes! 🍀
Thanks Jane. I’m having a wide range of blood tests tomorrow. She acknowledges that it could definitely be something else, however she is concerned about damage from the inflammation, in the meantime. You know what? I might just hold off on the pred. I’m always loath to disobey instructions, especially because she is such a darling and called me this afternoon to discuss the options. It’s a dilemma I have to nutt out. Xx
She'd not have the same fit if it were a chest infection which could send the CRP into orbit!
I don't have any infections, nothing to explain this. Lots of tests coming up, hold off on the pred?
But that contradicts the usual advice: a single raised blood markers result WITHOUT symptoms should NOT result in a knee-jerk increase in pred dose but monitoring of the markers to establish a trend. CRP and ESR are non-specific and can be raised by many underlying causes - there is inflammation, but where?
Bit silly putting you on pred and waiting for a PET scan, it will mess it up.
Yes, I asked her about that, particularly as I'm having a TCZ jab tomorrow as well. I have a calf issue whereby my leg hurts if I take a hill too fast, but it recovers quickly. She's a bit worried about a narrowing vessel. I don't know what to do. Do you think it would be ok to hold off on the pred? Just take the TCZ? She's new, replacing my retiring Rheumatologist. She's giving it a shot, going to consult colleagues, but I trust you more.
Since you have no symptoms I think I would wait. Would be interesting to know if that sends the markers down - it should if the problem is PMR and IL-6, that's specifically why it is used. Pred will send them down whatever the source of the inflammation - that is why pred is needed for half of GCA cases, there are 2 other underlying mechanisms for the inflammation which don't respond to TCZ. I think she is panicking a bit over the CRP/ESR levels. There isn't a lot of connection between the badness of PMR and the blood levels.
Personally, I'd like to see some investigation of where the rocks are beneath the surface of the water before jumping in. CRP rises with lung and other muscle problems too. But that is just me thinking logically and maybe she knows something I don't. And to be fair - she is a doctor!
Thank you. My gut days hold off. She's not even thinking PMR, she's all about GCA and the risks. I'm seeing my very sane GP on Wednesday so will run it by her as well. Thanks for always being a sounding board of wisdom. Having the motherload of blood tests tomorrow so will stay in touch.
Well if she's worried about GCA - 15mg seems a tad token ...
Your sane GP sounds a very good next step after the blood tests
To be fair, she acknowledged that. She was trying to appease me, middle ground. I'm relieved she didn't push it. Staying positive but let's see. Thanks again, means the world.
So take the TCZ jab? Won't effect the PET?
I don't know - depends what they are going to find. It SHOULD reduce the CRP and ESR but I know my rheumy still does them in case of other possibilities. If it is PMR/GCA it is aimed at that inflammation so you would imagine it will also affect the PET scan result. It is all a bit complex really. Can you leave it and contact her or the GP before taking it?
Yes. I'll do that. Thank you.
Oh, bu**er indeed!
But as others have said maybe not what you think..
As I mentioned in past, mine went high 3 years after GCA - and following 2 replacement surgeries within 6 months - and of course doctors went into panic mode. Understandable. Wanted me on 40mg for a week, tapering over a month down to zero. I started on 20mg and decreased over the month - absolutely fine when tested again - and certainly no sign of GCA - and never told them I’d not started on 40mg..
Oh I love you DL!! Thank you for this. I'll make a decision after I see my GP on Wednesday. You gals are the bomb! Hope shines eternal xx
Actually I did write a post about it - or two actually,
- oh did you?
yes I did! 😇
healthunlocked.com/pmrgcauk...
Yes. Thank you 🙏
I had a reading of 412 for ESR once and I felt fine. I had just had a new hip and it must have affected my blood test.
I don't seem to have an obvious reason for my high reading, but thank you piglette.
if you're having a PET CT and you can hold off everything until after I would. You can take it all straight after. Good luck. Intriguing.
My husband had no symptoms, he was mowing the lawn in no pain & feeling well. The next day I had him taken by ambulance & he was in hospital with pneumonia for ten days. His CRP was 100. But unless blood tests are carried out on people who have no symptoms or a reason to get them done, how would they know?? I’m not saying you have pneumonia, just saying after 4 weeks hiking in Greece your body may be tired, & perhaps some infection is lurking inyour system!!
Guilt over my condition 
probably over thinking but interested
Off pred in just over a year!
Restless legs and all over restless syndrome
