1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

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

Next
  • tina-uk_cwall
    tina-uk_cwall Susanne_M_UK

    Posted

    Hello Susanne, what a blow. But you may only be back on this high dose for 2 weeks. My rheumatologist told me that if I have a flare to up my preds to 15mgs for 10 days and then reduce them back down to the dose prior to the flare and stay there for a further 6 weeks then try to reduce again. I only have PMR.

    it's good you have a blood test tomorrow, depending on the results, I assume your Dr will take things from there, but I personally think it was good to increase your preds and I hope you are by now feeling much better for it.

    regards, tina

    • Susanne_M_UK
      Susanne_M_UK tina-uk_cwall

      Posted

      Thanks Tina

      I really hope that whatever the outcome, I'll be able to reduce quickly. It seems like I'm forever going back up on the dose.

    • kathy67492
      kathy67492 tina-uk_cwall

      Posted

      So, if I had a flare at 7 mg and went back to 10 mg for 6 weeks....am tapering to 9; does your rheumy suggest I could have gone right back to 7 mg without tapering thru 9 and 8 mg? Scary yo think of doing that since the horrible flare is still in my mind. Thanks.
    • tina-uk_cwall
      tina-uk_cwall kathy67492

      Posted

      Hello Kathy, I had a flare just before Christmas, I attempted to reduce from 9 to 8mgs. So I upped my dose back up to 9mgs, about 2 weeks later I discovered the dead slow and almost stop reduction plan and thought because I was now feeling ok I would reduce to 8.5 this time. Well I quite clearly wasn't ok because I suffered another flare so I went back up to 10 then reduced to 9.5, then 9 every six weeks then attempted my reduction to 8.5, then 8 and tomorrow I attempt my reduction to 7.5.

      when I visited my rheumatologist and I told him I'd had a flare and told him how I'd approached my recovery from it he told me that if I suffer a flare again I don't need to work my way back down through the doses again I could simply up my dose to 15mgs for 10 days then go straight back onto the dose prior to the flare. 

      So yes, that's exactly what he recommends. I must admit that process does terrify me to and I'll let you all know if it works if I experience a flare with my reduction which begins tomorrow.

      regards, tina

    • MrsO-UK_Surrey
      MrsO-UK_Surrey kathy67492

      Posted

      I, too, would feel concerned about dropping back down straight from the increased dose to the original dose in one fell swoop after a few days.....if it was a considerable drop.  If not, I feel it would be too confusing for the body all in one go.  We are all different and it might work for some but I was under a brilliant rheumy with a special interest in PMR/GCA and involved in research.  The following was his plan for reducing me back down from an increase to 10mg following a severe flare between 5 and 3mgs:

      10mgs for 2 weeks

      7.5mgs for 2 weeks

      Alternate days of 7.5 and 5mgs for 2 weeks

      5 mgs for 5 1/2 months

      Hope that might help.

       

    • tina-uk_cwall
      tina-uk_cwall MrsO-UK_Surrey

      Posted

      Hello mrs O, yes, you may be right I remember when my rheumatologist told me, I sort of replied in a very high pitched voiced and eye brows raised, "what to 15 for 10 they straight back down! He confirmed it.

      however, seeing your reduction following a flare, it makes much more sense. It's about raising the dose sufficiently in order to really give the flare what for then reducing in sufficient stages that you're not on the high dose forever, but reducing enough that your body can cope with until you get yo the dose where you were good at prior to the reduction and flare.

      tomorrow I start my dead slow and almost stop reduction from 8mgs to 7.5mgs. I'm obviously hoping all goes ok but if not then it's your response I will follow.

      i hope all is well with you. Regards, tina 

    • kathy67492
      kathy67492 MrsO-UK_Surrey

      Posted

      Thank you. I guess I will continue this 9 m taper....down from 10m for the flare. Stay at 9m for a couple of weeks...then try a 8m taper for a couple of weeks...then .5m taper after that. I am using the alternate day regimen usd by lodger....that worked really wrll for me from 10m to 6mg before I had the flare.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey tina-uk_cwall

      Posted

      Hello Tina, to be fair to your rheumy, he may, of course, have had a patient or patients for whom his suggested reduction method following a flare was successful and we don't  know whether we would also be successful without trying it - it depends how brave we are (or, as some would say if it failed, how stupid!)  It's only from experience that we find out.  For instance, I knew from my experience that my body proved very sensitive to the reductions below 5mg whereas I'd been fairly textbook prior to that.  A learning curve, and a very complicated one at that!

      Lots of good luck wishes for the next stage starting tomorrow - hopefully you can't go far wrong when following the slowly slowly approach.  Take care, especially with those bed changes!wink 

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    I forgot to say I have HAD, following 5 years of PAM.
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    GCA! Not being able to edit is a real pain!
    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Susanne, I don't realise how lucky I am until I hear stories like yours. You must really think there is no light at the end of the tunnel, but hang on in there, you had got down to 20mgs and that's brilliant. As I say hopefully his upped the dose so high to blast the flare back into touch and you'll be back down to 20mgs and stay there for a good while longer then perhaps try to reduce by a mere .5 each step. I wish you all the best, tina
  • MrsO-UK_Surrey
    MrsO-UK_Surrey Susanne_M_UK

    Posted

    What a bummer, Susanne, especially when you've probably had a taste of feeling much better for a while.  However, try not to despair because you should be able to reduce back down a little faster next time around, at least to a dose just above the 18mg where things went pear-shaped.  Even if the blood test results are normal tomorrow, that doesn't mean that you don't have increasing inflammation - sometimes the blood tests can lag behind. I hope your pain responds quickly to the increased dose and you feel much better tomorrow.

     

  • lodgerUK_NE
    lodgerUK_NE Susanne_M_UK

    Posted

    Do not worry, it is not uncommon to have at least two flares, generally within the first 18 months, but nothing is set in stone.

    I had two flares, first one back to 60mg,  second one back to 40mg.   Five years down the line - remission and still in remission 4 years later.

    There is light at the end of the tunnel, just no-one knows how long the damn tunnel is.

     

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.