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Why does my inflammation blood test level keep going up and down

Posted , 7 users are following.

carol16456
carol16456

Hope all my fellow sufferers out there are feeling in good spirits . I have not been in touch because I find my pains here and there are boring me let alone everyone else . However as usual I find comfort in moaning to you all because you understand . Since my weekend in A and E with chronic head pain ,and the first doctor I saw did not know of PMR or prednisalone which I explained were steroids ,I can see where some of you are coming from when you say PMR is little understood .

After my awful weekend ,and finding that even morphine couldn't ease the pain , when I was discharged I was told that it was thought that I had multimigrains caused by a mixture of PMR and ostioatheritis in my neck mixed with the trigeminal nerve pain which I have had for years .

Now I am wondering what is going on .My crp ? Level was only 22 this was May Day weekend . 5weeks before it was about 35 and I felt ok .Now my last blood test which I had last week was 40 . My neck shoulder pain is nigally and when I turn some Times I get shooting pain through my neck to top of my head , Can PMR cause this . The doctor at the hospital sujjested I get a second opinion from a neurologist which my doctor has arranged . Have an appointment in two months .Even though my crp level is raised my doctor has told me to stay at the pred level I am at which is 9.5 until my next blood test in 5 weeks .i feel I should perhaps go back up to 10mg .They did do a CT scan when I was in hospital I assume for GCA and I was found to be ok . But feel as though my life is in the lap of the gods , and I hope one of them doesn't sneeze . Sorry this note!! is long winded , but sympathy and tea would be nice , please

2 likes, 7 replies

7 Replies

  • Guest
    Guest carol16456

    Posted

    Was the 40 your sed rate? That is too high if you have headaches. A c scan does not diagnose giant cell arteritis. From your symptoms, you may need a temporal artery biopsy. GCA is treated with high doses of preds starting with at least 60 mgs. Eileen is our expert so I hope she responds to OK my thoughts and experience or to make other observations. Those headaches if not migraines can cause everything from blindness to an aortic aneurysm so do not wait. Hope things get better quickly, Amn11195
    • carol16456
      carol16456 Guest

      Posted

      I have been away from this Forum for about two months and am very conscious ofGCA but having had trigeminal neuralgia for the last 40 years or so , I know there are similarities so do keep aware , and eyes open (so to speak ) of GCA . So thankyou for coming back to me .Eileene had sujjested to me to go for the Bolun massage therapy which I hope to start in a few weeks when I come back from holiday . My daughter who has fibromyalgia has a womderful partner and doctor who help her through . I must admit since my hospitalisation which was about four weeks ago my husband my husband has been so much more helpful and thoughtful . I am hoping the Neurologist who I am seeing in a couple of months will be able to do something for me . I do not understand my doctors reluctance to send me to a rheumatologist although I do have a some faith in her help as she has started going to meetings on face pain and neck .I am now on amatriptolin which does help the nerve pain . Although can make me a little sleepy . Thankyou all for getting back to me . I am having my tea while reading your replys , so hopefully the tea and sympathy will make me settle down Carol
  • constance.de
    constance.de carol16456

    Posted

    Every one of us will offer you sympathy, but the tea will be a little difficult!

    My ESR was 100+ and CRP also excessively high (can't remember the exact number).  These numbers fluctuated all the time.  As soon as I dropped the pred up they went.  The yo yo effect not only disturbed me it affected my doctor, too.  He often said "this is not the way PMR progresses"!  He now (after 3 1/2 years) says "you just like to be different, don't you?"

    Don't get me wrong!  I am now down to 6 mgs, so things did settle down eventually. Take heart, and good luck!

  • christine_fay
    christine_fay carol16456

    Posted

    This is appalling... A doctor that has not heard of PMR nor Prednisolone !

    however my husband is getting a visit from a Multiple Schlerosis nurse for the first time in 10 years. We were never told there was such a service and it's been around for ages.... My doctor admits he knows nothing about MS let alone PPMS and I find that appalling.

    One wonders what is going on ?

    i have certainly gotten more relief, pain control and ability to manage this condition by talking to people in this forum and by researching and studying the condition. I am not a doctor nor anything to do with the medical profession yet I can spot someone with PMR several yards away.

    its not a new phenomenon... In fact I am sure a number of my older relatives had this.

    visits to the doctor these days are the most frustrating and unhelpful.... I recently also suffered excruciating headaches but no notice was taken and no tests suggested. I was not sleeping well at all so addressed that with some suggestions from this forum and my headaches have now subsided quite significantly. I am reducing successfully and am now about to go to 13mg so I am feeling a lot happier. 

    I try to remember when my problems with inflammation started... And it was way back in 1973 when I was pregnant with ny fourth child. I had a twin pregnancy and thought I had had a miscarriage. I was lying on the sofa and realised my legs had swollen enormously and were bursting my rather loose trousers... I had had some reaction to a toxic pregnancy, so they thought.... Actually I had lost one twin but still had one healthy baby intact.... 

    The years that followed were very different. Muscle and joint pain. Chronic sciatica, stress and utter misery from not being able to get away from pain and swelling.

    i am a very physically active person and doctors always put my problems down to overdoing it... 

    At least I don't have sciatica now... Only occasionally and an ice pack will stop it.

     

  • EileenH
    EileenH carol16456

    Posted

    A DOCTOR didn't know what prednisolone was? Where on earth are you?

    A CT scan won't show up GCA unless it was a PET-CT scan - one done with contrast substances that show up certain things on the scan. I know a CT scan is used in the US like x-rays are in the UK - in fact, probably even more - but it isn't failsafe and does NOT give all the answers.

    Tell your PCP you would like to be sent to a rheumatologist NOW. I fail to understand how doctors are so unable to recognise their own limitations - I don't expect them to know everything about everything - but I do expect them to be aware they don't know it all. The most dangerous person in the world is the one who doesn't know that they don't know something.

    I did have neck and stabbing head pain that was due to neck/shoulder muscular problems and Bowen therapy did help that a lot. It was due to a bite problem - an erupting wisdom tooth was making my neck and shoulder muscles work hard to keep my head straight - result pain. It  might be worth trying to see if it brings some relief in the meantime. Is it not possible to see the neurologist sooner?

    But you need to see someone who 1) knows what PMR is, 2) knows that pred is used for it and 3) head pain can be a sign of GCA which is associated with PMR.

  • suesing
    suesing carol16456

    Posted

    Hi Carol, I also know what you mean by feeling as if your life is in the lap of the Gods where Doctors are concerned.  When I was first diagnosed with PMR my ESR was 98 and my CRP was 137.  As I had been suffering with chronic headaches for about a year before this, I had a temporal artery biopsy, which thankfully came back negative. I still do suffer from migraine headaches and since being diagnosed I get random flashing silver and blue lights at any time,  I have mentioned these to my GP and Rheumatologist, who suggested that I have an eye health check to rule out other eye problems.  This I did and my eyes appear to be healthy. However, the optician had never heard of GCA.  As my inflammation is now being kept very low and I'm down to 5mg of pred, things are progressing well.  I have other niggles with my GP, which really come down to him not fully understanding what it actually feels like living with PMR on a daily basis, his insistence on coming off Prenisolone at record speed (advise which I won't follow) and his understanding that as I'm now on the Pred' I shouldn't be feeling any symptoms at all!

    I really do feel for you and hope that you are soon able to sort out what is causing what and get the support and treatment that you need.  Meanwhile there is always tea.....but make sure it doesn't contain liquorice....I'm about to put a post up about this, which might be helpful to others.

  • Juno-Irl-Dub
    Juno-Irl-Dub carol16456

    Posted

    Carol, if it's any help to know - my CRP levels fluctuated wildly  for some time after diagnosis of PMR starting at 96 then up and down at each 3-monthly tests.. The rheumatologist initially talked of "atypical" PMR and then, 6 months ago, sent me for a CT scan (like yourself) to "rule out anything else going on"). Thankfully it was OK. So she said that we can carry on and ignore the readings for a while. Then the last reading (May) was normal - I felt like throwing a party  !!   So I wouldn't worry too much about it. I'm sorry you are feeing so poorly at the minute and I really hope you settle down. After your neurologis's apt. maybe a rheumatologist would be worth seeing especially as your GP doesn't sound helpful - to put it mildly !  Kind thoughts, J
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