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another flare?

Posted , 6 users are following.

Susanne_M_UK
Susanne_M_UK

I was tapering quite nicely and got to 18mg when it went haywire. Went back up to 20, but slowly over a week, my symptoms of temple pain, lethargy and generally feeling unwell, increased.

My rheumatologist is away and I'm due to see a stand in rheumy on Tuesday. However, today, having slept all afternoon and feeling absolutely wretched with fatigue and temple pain, I called my GP to ask for an urgent blood test. As luck would have it, she is away, but the young duty doctor wanted to see me as his last appointment.

I went through the potted history and he has told me to increase to 40mg and has requested an urgent blood test for tomorrow morning.

I'm so fed up being back at 40mg! There is no end in sight at this rate.

Will wait to hear of the blood results tomorrow eve. If they turn out to be ok, the 40mg will have been a terrible increase. If the markers are up, well, who knows I did ask him whether I should wait for the bloods before increasing to 40, but I suppose him being young, he wasn't going to take any chances. On the other hand, I'd rather have a GP who takes the condition seriously unlike my last surgery.

2 likes, 48 replies

48 Replies

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  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Thank you MrsO and Lodger. I need a little reassurance and your wise support really helps.

    Got up at 6 this morning, my mind in a whirl.

    Will let you know the results once I have them, hopefully late afternoon. X

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Susanne,  sometimes I think that the brain fog side effect at the very high doses can be worse than the symptoms.  I hope you have an easy day planned.  Chin up, you've managed some good reductions previously and you will do so again.  Hugs, albeit virtual ones.  
    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      Thanks MrsO. I cancelled my art class this morning after the blood test, which I'd been looking forward to. Feeling out of it on 40mg. Sleeping, sleeping.
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Well, GP called this evening with results. Both ESR and CRP are 7!

    He told me to carry on with the 40mg until I see stand in rheumy on Tuesday. Said he didn't understand it and wasn't sure what to do.

    I still feel like s!!/t, fluey, shivery, sleeping lots, pain in temples and behind eyes. It gradually got worse since tapering to 18mg.

    Do I have a flare? This is definitely not some sort of other virus.

    Hubby just looked up that having a normal marker does not preclude GCR.

    In some ways, I would have liked to see a raised marker, as this leaves me feeling so unsure, even though I recognise the symptoms so well.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Susanne, it could be a case as I said before of the blood results lagging behind, or even on this occasion just not registering - hubby is right.  You could perhaps still be harbouring some sort of infection/virus which is having a knock-on effect on your GCA symptoms.  If it is a flare, the next couple of days should provide the answer.  If things worsen and you feel concerned, especially with your eyes, then don't hesitate to go to A&E.  Wish I could wave a magic wand. 
    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      Thanks MrsO. Will see how things are later today. Just sitting here at the moment, letting the alendronic do its thing, - oh the joys!
    • Susanne_M_UK
      Susanne_M_UK lodgerUK_NE

      Posted

      Lodger, I asked my rheumy a while ago about a Dexa scan. He said something to the effect of...there's no point in having one, as you are already at risk due to the Preds. I didn't pursue it, as I was tired of battling.
    • lodgerUK_NE
      lodgerUK_NE Susanne_M_UK

      Posted

      Utter rubbish.

      Tell him to read the Diagnosis and Treatment of both PMR and GCA.

      Dexa scans are recommended as soon as possible.  This gives you a base line.

      I was on high dose pred for nearly two year, perhaps down to 20mg, this due to GCA, starting on 60mg and then two flares in the first eitheen months.

      Dexa scan  97% - no need for Bios'- one done every two years - no change.  Last one done after 5 years of pred and two years off.  Still no change.   They cost about £20 to the NHS, how much does giving someone AA or another Bio, just in case.

      Hard Facts and you need to fight your corner.

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Much better today, so must have been a flare regardless of the markers. I'll point it out to rheumy and my usual one when I see him next. I know my own body and need to learn to trust the signs.
    • lodgerUK_NE
      lodgerUK_NE Susanne_M_UK

      Posted

      Susanne

      Is it right that I am reading you have had PMR for 5 years?

      I am a bit puzzled because you went back up to 40mg, is this because the young GP thought it might have morphed into GCA, which can and does happen?

    • Susanne_M_UK
      Susanne_M_UK lodgerUK_NE

      Posted

      Lodger, I had PMR for 5 years and was down to a very small maintenance dose at the end of 2014, when I started having GCA symptoms and started on 40mg Pred. This is now the third time I've been on 40, having had a flare in April.

      You may remember that I had a lot of problems with my previous Doctors surgery, them not wanting to sign me off work and misdiagnosis etc.

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