Hi ... I haven't posted before but I had a diagnosis of PMR and GCA in April 2018. Since then it has been the usual roller coaster of Pred and I am now on Methotrexate subcut injections 20mg as well as 3.5mg Pred. My last few blood tests have shown that my CRP level is 5 but I am still experiencing PMR type symptoms of pain and stiffness. My rheumatologist says that if my CRP is so low it can't be PMR symptoms and it must be something else. Is anyone else having the same experience. I am really puzzled.
Rosy
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Chokkers
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Afraid by your Rheumy may be wrong...blood levels don't always have to be raised - in fact in up to 20% patients never are.
Do you have enough tablets to try and go up to, say 5 or 6mg for a few days and see if that makes a difference? 5 days should give you the answer - if you feel better then the odds are PMR, if not then it may well be something else.
Whatever the outcome, you can then drop back down to 3mg if no better, or 4mg if there is some difference. If you do notice a difference so, then can I suggest you use a slower taper - by 0.5mg per time and maybe stagger it like this -healthunlocked.com/pmrgcauk...
Hi Dorset lady, I can never really remember a time not being stiff and sore even on a high dose of Pred. I am definitely going to discuss the possibility of adrenal insufficiency when I see my rheumy next month. Thank you I appreciate your reply.
I have NEVER had a raised CRP and the ESR was never out of normal range despite awful symptoms. Some people may have raised levels initially but if they flare while on pred they never develop the acute response (the posh medical name for the ESR and CRP going up). No-one knows why, it is just so.
However - has he bothered to do a synacthen test to assess your adrenal function? If they are not starting to top up the pred dose it is possible you are suffering secondary adrenal insufficiency and very occasionally patients suffer from muscle and joint pain as well as the more common fatigue etc.
My CRP and ESR have never been high except on one occasion with an infection. I have PMR & GCA and my old G.P. felt that I had very mild PMR because of my low blood results 😱😱xx
What makes them think it is mild because markers are low? You'd struggle to find much lower than mine - 16 (I think) years later ... Maybe I'd rather have had a shorter sharper version ...
my rheumy who diagnosed my PMR and was unhappy with my.pred dose at one point said.."well your inflammation level were really high years back"........and I thought and your point is......what? I don't have PMR? What. She's not wrong info wise...but what it had to do with symptoms etc I don't lnow. My levels were very high at the beginning of this...my first retest they were much lower because of the pred. and in a sync with symptoms. Then because of orced remature titration .....yes I said that...mynsymptoms went off the rails and labs matched. but I am having hard time getting below 22...20 is not going.as I had hoped. Giving it more time.
I think.it is importent to know and communicate to docs that the labs might not match and symptoms are the best thing.to look at.
do pain meds help.your pain? That seems to be an indicator of whether PMR is what is going on.....but those that are experts can tell you. That has helped me with some of my symptoms.
good luck with everything....maybe you will be able to test extra pred as DL suggested to see if it resolves some or all...giving you some info to share.with the doc.
yeah ..I saw that. My problem the last few days is I have been reading a lot and then I get interrupted mostly by my pooch....but meds being delivered...yada yada... and then I get.back to it and.forget the timing and a lot of times I just read...but sometimes I blather. Oh well no harm, no foul. I ill try to remind myself to recheck. Thanks though.....
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