No inflammatory markers in my blood You don,t have PMR

After an urgent referral to the Rheumatology dept (which took 9 days to come through) I have been at told that my fever sweating, pain in hips back legs knees and neck are all due to wear and tear to the joints and because my bloods are normal I can't have PMR.

You can have normal markers and still have it I replied.

I was then told that it was extremely Rare for that to happen.

What about the GCA I said which started with excruciating head and temple pain, and my ESR/CRP readings were through the roof and then returned to normal within hours of starting high dose steroids and symptoms dramatically improved.

I don,t have that either apparently as my. Temple and head painsi are caused by referred neck pain.?

I have been instructed to reduce my steroids from 20 down to zero in three months starting at reducing 2.5 mg every two weeks until I get down to 10 mg , that's a reduction of 10 mg in a month with the aim to reducing the remaining 10 mg over the next two months to zero. I am feeling extremely confused!!!

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  • Um - as you'll know from your reading here, about 1 in 5 patients has an ESR/CRP within normal ranges. I don't know how referred neck pain and /or wear and tear would cause an elevated ESR either.

    What does your GP say? Who diagnosed the GCA/PMR in the first place? Whereabouts are you?

    I must have mentioned this paper

    rcpe.ac.uk/sites/default/fi...

    although Kirwan is actually not entirely convinced by the normal bloods because he has never seen it. However, someone who is doing research with him has. One of the other top people in the UK, Dasgupta in Southend, was part of the group who published this paper:

    onlinelibrary.wiley.com/doi... Salvarini et al : GCA with low ESR is not uncommon

    If you have a GP who will talk, take these papers to him/her and discuss where you go from here. If nothing else, whatever you have responded well to pred and so comes under the classification of "pred-responsive polymyalgic syndrome"

  • Hi PMRPro I Have downloaded your paper many thanks, Knowledge is power

  • I really feel for you Classicmike. It's so frustrating to jump through multiple hoops and still not have a diagnosis. My experience has been that Dr's don't like what they can't explain and will minimise and sometimes ignore symptoms or come up with patently ludicrous explanations!

    PMRpro has given you good advice. If you reduce the steroids according to the Rheumy's schedule and become very symptomatic again then get on the phone to their secretary and report it. That's what I had to do when I was reduced to 7.5mg and couldn't get out of bed for the joint pain, couldn't eat because of the jaw pain and couldn't get my head off the pillow due to the headache. My rheumy phoned me back the same day and my steroids were increased.

    It is very sad that sometimes the only thing to do is follow advice and become symptomatic in order to be taken seriously.

    I truly hope you manage to get better medical management soon.

    Best wishes

    Keyes

  • Hi Keyes how awful that you had to ago through all of that unnecessary pain in order to get your illness under control.

    Your experience clearly reflects the lack of knowledge shown by some medics and the contradictive advice handed out willy billy without a thought for the consequences. It does,nt bear thinking about going blind on the instructions of a so called expert.

  • I forgot to mention that after nearly a year on high dose steroids the registra that I saw. Today thought it unnessesary for me to have a scan for osteo porosis Ummmm

  • GP is now making a referral to see Dasgutor at Southend, I don,t have any confidence in the care I am receiving.

  • Hope Baskar remembers his paper from 2001! You can remind him!

  • Yes I might well do that PMRPro

  • Hi Classicmike. I am confused too. How can your rheumy say you don't have GCA when your ESR/CRP readings were through the roof a year ago? You obviously had it then! Of course, it stands to reason the markers are normal now - because you are on prednisolone! I am wondering how they determined your typical PMR symptoms are due to wear and tear and not PMR. Was an X-Ray taken, or scan? I hope they will take the ESR/CRP readings again once you are off the steroids. But, hopefully, this will be sorted out properly once you have seen Prof Dasgupta, someone with more knowledge. Good luck!

    To be honest, I am beginning to dread my first rheumy appointment late this month. I have little faith from what I have seen on this forum.

  • Hi badgergirl it speaks volumes that I saw a registrar and not a rheumatologist, if you are atypical it's a pain, if. You excuse the pun.

    I will be taking my hospital letters with me when I see the professor nextTuesday and see what he makes of it.

    The first letter from the most senior Rheumatologist gives me a definative diagnosis of GCA. Based on very high blood results and almost immediate relief from excruciating headache and temple pain. And blood results retuning to within normal range when starting on very high prednisolone

    Next Rheumatologist looks at my results and comes up with theory that I have referred neck to my temples I expect both her. And her wet behind the ears registrar who reports to her both thinks that my PMR does,nt exist either.

    I think this should be a warning to all, especially if you are unlucky enough to have GCA

    don,t lose sight of where you are with these illnesses (another pun) and listen to what your body is telling you as well as what the medics say and don,t follow their advice blindly (sorry not very punny)

    Hope this is of some help

  • Hi Classicmike. Thanks for making me laugh! I needed that. True, we are aware of our illnesses a lot more than some GPs and rheumys and must stand our ground. B

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