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Is it a flare if my SED rate and CRP are normal?

Posted , 11 users are following.

audrey80537
audrey80537

I am and have been having a considerable amount of pain in my shoulders and lower back. Sometimes sharp pains I have had two flares in the past. I am on 10 mg pred. First was diagnosed March of 2015. Last flare was also at 10 mg.  have been under a lot of stress lately and this started about a week ago.  My SED rate and CRP are normal.

Audrey

0 likes, 23 replies

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  • Kdemers
    Kdemers audrey80537

    Posted

    I think SED rate can often be normal.  CRP is a good indicator but have read many many articles sayiig that not all patients have SED and CRP as indicator.  You and how you feel are the best indicator.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey audrey80537

    Posted

    Audrey, if you are someone who had raised markers of inflammation at diagnosis, repeating the blood tests can often provide the answer.  Certainly they proved a useful guide for me as I was someone whose blood markers would alway increase in line with flaring inflammation.  BUT, the blood tests can sometimes lag behind the symptoms.  PMR loves stress and, as you mention having been under a lot of stress lately, it is quite possible that it has precipitated a flare.  Perhaps increasing to 12.5 for a week or so will provide an answer.  I do hope things soon improve all round for you.
  • audrey80537
    audrey80537

    Posted

    Thanks Mrs O,

    My SED rate and CRP were quite high when I was first diagnosed.  

    I had it tested again last week and it was normal.  Since then is when the pain started.  After the first two flares the doctor did not order blood tests.

    this time I went to the GP and she ordered it.  I'm giving up my rheumy and my GP agreed to treat me.  Neither of them know much about PMR but my GP is easier to deal with.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey audrey80537

      Posted

      Audrey, unfortunately it seems too common to find GPs who don't "know much about PMR".  I remained undiagnosed for a year by three GPs and even a rheumatologist - it was eventually a pharmacist who put two and two together and suggested PMR/GCA!  However, after diagnosis I found a wonderful rheumy and remained under his care throughout my PMR/GCA 'journey'.  It does make a world of difference to this 'journey' if we have confidence in those treating us.

      ​If you have decided to increase your dose back up to, say, 12.5mg, I hope it resolves your increasing pain.  When you reduce back down again, don't go back to where you were but stop at a dose just above for much longer, making it your 'maintenance' dose for a while to try and get on top of the inflammation that makes itself known at the 10mg point.  Like the 5mg dose, 10mg can often prove a sticking point so a longer period spent there followed by very slow tapering via 0.5mg decrements may prove more successful.

  • snapperblue
    snapperblue audrey80537

    Posted

    It depends how you define "flare!"  As Eileen has often mentioned, for some people the blood tests do not track changes in symptoms.

    I define it based on my symptoms.  Anytime the pain comes back or increases, I consider that a flare. If the pain is "considerable," I'd definitely call it a flare.

  • snapperblue
    snapperblue audrey80537

    Posted

    As MrsO says, when I have a mild flare, I adjust my dose slightly upward for a few days, then go back to the lower dose and see what happens.  My doctor agrees with varying the dose in response to symptoms.  Unlike many docs, he trusts my common sense!
  • EileenH
    EileenH audrey80537

    Posted

    A flare can precede the inflammatory markers increasing - and symptoms are always king. The blood markers sometimes don't rise again when you are still on pred but everybody is different, there is no hard and fast rule. But if you had them checked BEFORE the "flare" - who knows what they are now anyway. They are the result of a flare, not the cause.

    However - you say the pain is mainly shoulders and low back - which suggests to me it may not the the PMR per se but possibly something that is commonly found alongside PMR called myofascial pain syndrome. It leads to the formation of so-called trigger points which are concentrations of the same cytokines that cause the inflammation and pain in PMR - which are located in pairs on either side of the spine, in the shoulders, about rib level and in the low back where the dimples are on a baby's bottom. These can irritate/pinch nerves nearby and lead to referred pain - into the arms and neck, around into the ribs and into the buttocks and thighs depending on which area is affected.

    I used Bowen therapy to deal with it in the 5 years before I started taking pred - it is relatively easy to access, depending on where you live, and doesn't require begging a GP to refer you. My osteopath was also quite helpful - though I regard Bowen as osteopathy for soft tissue (muscles and tendons) and it was better. A good physiotherapist (especially in private practice) should also be able to identify the knots in the muscle and use their finger to do manual mobilisation. I have had cortisone shots into the affected muscles and trigger spots - but tht requires a doctor, I have one here in northern Italy and gPs do it in mainland Europe - different matter altogether in the UK. Though you say sed rate - do I gather you are in the US? Sorry can't remember if you have said before.

    Google myofascial trigger points for illustrations and a lot of info on various sites. Going to the site Bowen4life will tell you about Bowen and what it can do. And believe me, He doesn't exaggerate - for some things it can provide a dramatic improvement.

    • audrey80537
      audrey80537 EileenH

      Posted

      Thanks Eileen

      i made my first Bowen appointment for next week. Did you go every week and for how long?

      Audrey

    • EileenH
      EileenH audrey80537

      Posted

      No, when I first started I had a couple of sessions, things improved and then I'd wait for some time, 6 months or so usually, until I felt i needed it again. Because part of the problem was the PMR it was ongoing but with some acute things, like real frozen shoulder for example, once it is sorted it stays OK. Nowadays I usually have 2 unless I feel I want another.

      It also depends on the therapist a bit - some like to do 3 sessions straight off, often 1 a week. Tom Bowen originally said that is if it was going to be successful you would know within 3 sessions because there was a change in the pain/movement problem. That didn't mean it was cured in 3 sessions but 3 sessions should be enough to achieve an improvement and that was what my therapists both said and that is what I usually say: if it hasn't at least started to work after 3 sessions you can probably give up - it isn't like many chiropractors who tell you you will need treatment for the foreseeable future. That said, I know one lady with PMR on another forum who has been going for some time, at first once a week, then once a month and now every couple of months. Like me, she says she doesn't mind because not only is the physical problem improving slowly but she finds other benefits from a session - I feel pretty much as if I've have a nice gentle massage and definitely uplifted. It costs about the same as a massage and takes a similar sort of time - and it really is "me" time which I wouldn't do otherwise.

    • audrey80537
      audrey80537 EileenH

      Posted

      The therapist I found here trained under Tom Bowen either in the UK or Austrailia-can't remember which.  She is also an instructor. She even visits people who are unable to go to her office.  I believe she knows what she is doing and I'm looking forward to going back however she is very busy and I have to wait another week.
  • audrey80537
    audrey80537

    Posted

    Thank you Eileen and everyone who responded.

    i increased to 13 mg this morning and will see if it makes a difference.

    i was great at 11 but as soon as I went to 10 the pain started creeping in.  It too several weeks to get to this point.

    i will also set up an appointment with our Bowen therapist here in the US.  She is quite good and trained and comes from the UK.  I went to her once and should have returned but right after the treatment I developed a neck pain that vas very uncomfortable for a long time and attributed it to the treatment.  

    Pits very possible that my pain could be caused by TP.  For several days I can have a horrible pain in my groin and suddenly it is gone and appears in two other areas.  I'm Not mentioning it anymore to those around me because I know it sounds crazy. For several days every time I moved my leg in a certain direction I would scream out in pain and all of a sudden I woke op one day and it was gone. Right before that it was my left hand but that only lasted a day.  Today it is my shoulders and my left knee with some pain in my butt.  Hopefully tomorrow will be better.

    Again, thank you.

    Audrey

    • EileenH
      EileenH audrey80537

      Posted

      Sounds like 10.5 might be your dose for now - and really, half a mg will make that much difference. 10-ish often poses a problem for some reason.

      After a Bowen treatment you could get a change in problems as the muscles get used to where they are now - and other muscles still aren't right - does that make sense? I know what I mean winkrolleyes

      TP?

    • audrey80537
      audrey80537 EileenH

      Posted

      Yes, I understand what you mean.

      TP=Trigger Points

      Audrey

  • audrey80537
    audrey80537

    Posted

    Sorry for the spelling errors.  If I backspace to correct my iPad freezes

    Audrey

    • LayneTX
      LayneTX audrey80537

      Posted

      Audrey, my iPad does that too sometimes, it even repeats partial words as beginning of sentence. Kind of frustrating,

      I've been confused by flares too. Doctor said let them know if I flare. Huh?

      My pains are pretty consistent in pain, just not that 100% like in beginning. 

      But here year later my big toe started hurting. And my fingers, I happened to have doctors appointment and the PA said that was a flare, but my SED and CRP levels are in normal range, though higher than last visit.

      but they didn't say to increase Pred. 

      But fortunely like you my toe and finger pains subsided. I was also breaking my rules and eating flour/gluten so I'm betting that was it, 

      Bowen did help my back pains,  but not all my other areas.  But I love my Bowen gal so much for helping me relax, so I continue to go to her. 

      She also taught me better than my physical therapist the proper posture! 

       

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