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First flare up

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koen1
koen1

Very disappointing, but I suppose to be expected: I am having my first flare up. History: diagnosed PMR, 2 weeks 10mg pred, 2 weeks 15mg, 6 weeks 20mg, diagnosed GCA, 4 weeks 60mg, 2 weeks 50mg, 2 weeks 40 mg, 2 weeks 30mg, 6 days of 25mg with steady increasing stiffness in the shoulders and hips, cramp in one leg (the one where I have a damaged nerve near my spine). Today back to total stiffness, fever, a headache (that I recognize), sensitive scalp and jaw pain. Not good. It seems that I have not made much progress in the past months with the underlying disease....

Now back to 30mg, hopefully, it will be high enough to suppress the symptoms. I am afraid that if my eye darkens again, I may have togo back to much higher doses.Patience, patience, how very close to patient...

0 likes, 14 replies

14 Replies

  • Nefret
    Nefret koen1

    Posted

    I do understand just how frustrating and disappointing it all is, but you are in the very early stages and hopefully this is saving your eyesight.  Having said that I do feel that for GCA you were reduced too quickly, quite apart from that very odd starting dose for PMR which seemed to me to go in the wrong direction. Had you been started on the higher dose it may - just may - have had better results with the inflammation hit hard and kept under control.

    Are you able to contact your Rheumatologist and/or doctor? I feel that this problem should at least be recorded in your medical notes, even if you cannot see him/them in the short time before the Christmas holidays.  A phone call might help?

     

    • koen1
      koen1 Nefret

      Posted

      My rheumatologist is not easy to get in touch with, but I have decent access to the RN, who works with me on the dosing and monitoring of ESR and CRP levels. I was doing so good, CRP down from 86 to 3... (per liter). My ESR was never extreme, just borderline at the worst moment.
  • Oregonjohn-UK
    Oregonjohn-UK koen1

    Posted

    I can only state that it seems you were either increasing up - wrong as Nefret said - and if you did start the right way it's far too fast.

    • koen1
      koen1 Oregonjohn-UK

      Posted

      I had a strange complication after one week of bliss on 10mg. I got pleuritis, which lasted for 4 weeks and was under control when I got 20mg. That's when the head aches, nightsweats and fever came that in the end led to my right eye darkening almost completely. Then panic and up to 60mg...

      I believe that I have Merck to thank for the whole thing, since my first symptoms of stiffness occurred right after I got a Zostavac injection.

  • EileenH
    EileenH koen1

    Posted

    I suspect you may be right - Zostavac has PMR listed as an adverse effect from the clinical trials. if it can trigger PMR, then it could trigger GCA. Some work has shown the presence of the zoster virus in temporal artery biopsies from patients with GCA - of course there are people where it was found who don't have GCA and probably people with GCA who don't - there is a correlation but correlation is NOT causation!. However - I do hope you have submitted an adverse event report? Yellow card in the UK, FDA report in the USA and I believe a patient can make it - obviously doctors and pharmacists can, and they are important as that is how the REAL incidence of adverse events is established. The trouble is - doctors often don't understand their significance.

    As others have already said - I think too you have reduced too fast. A study done in London/Southend a few years ago showed there is evidence of inflammation remaining even after 6 months at high dose pred, considered as over 20mg. However, most UK reduction schemes would keep you higher for more than 3 months. 

    Just hold on to what Nefret has said - it is protecting your vision and you are being looked after. And it is early days.  All the best.

     

    • koen1
      koen1 EileenH

      Posted

      I tried filling out a form on the CDC website, but it got to technical for me and was likely meant for doctors.

      I think all of you are right. The lowering of pred was too aggressive, but you do want to know that the slower pace is really necessary and that you don't get enormous amounts of pred over time that were not needed. Our plan was to move much more slowly from 20mg down, but now I suppose it will be much slower from 30mg down. That is if 30 is enough to get the severe symptoms I now experience to go away. It feels worse that when I was diagnosed with GCA and I was on 20mg. I am really checking my eyesight regularly to be sure.

    • EileenH
      EileenH koen1

      Posted

      If the symptoms aren't improving - don't mess about, go to 40mg. There is no point at all being on a high dose that isn't doing the job - all the downsides and no benefits to balance them out. 

      Perhaps speak to a pharmacist about the reporting? It's easy in the UK.

    • koen1
      koen1 EileenH

      Posted

      I will be seeing my GP and also the RN from the rheumatology group in the next weeks. I will ask them to report it, or how I could report it.

      Again as you mentioned, correlation is not causation... but collecting data is hugely important.

    • koen1
      koen1 EileenH

      Posted

      I did fill out a VAERS report (Vaccine Adverse Event Reporting System) online at the FDA website. It was not easy since there was a need for detail that I did not remember after more than a year and especially since the onset was so gradually.
  • koen1
    koen1

    Posted

    This is my third day back on the higher dose of 35mg. I compromised between the RN (30mg) and Eileen's (40mg) recommendation. This is the third day and the symptoms seem not to be improving much. Actually the pain is worse than when I was diagnosed GCA in September. Head ache, sensitive scalp, stiff shoujlders and hips and especially jaw pain in upper and lower jaw, mostly right side of my face where I had eye trouble before. So far no problems with my eyes.

    My question is: how long should I try a certain dose before expecting an improvement? I am reluctant to just up the dose, even though I realize that I could go down to the 30mg level pretty quick, since I was OK at that level.

    • EileenH
      EileenH koen1

      Posted

      You really MUST go back to the rheumy - however difficult they are to see. A nurse is NOT adequately experienced - and it sounds as if you are settling in to a real flare.
    • koen1
      koen1 EileenH

      Posted

      I agree Eileen, I did not get to talk to him, but his assistant told him about the symptoms and he came back with going back to 60mg for 5 days, followed by 50mg for 5 days. Then I have a scheduled appointment with his office on the 19th. I think I will wait to see how I am tonight and tomorrow morning. If my temp is back to normal, I may try not to go all the way up to 60mg. Right now every morning before shower I am at 37.3 to 37.5 and after shower at 37.9 to 38.2. Before the flare up this was consistent at 36.6 to 36.7 Celsius of course.  I have a feeling that today was a little better than yesterday.
    • Anhaga
      Anhaga koen1

      Posted

      I hope you do feel better tomorrow, Koen.  Please treat yourself gently, as though you do, in fact, have the flu or at least a bad cold.  Extra rest may help you.  ❤
    • koen1
      koen1 Anhaga

      Posted

      Dear An and Eileen, thank you as always for the support and the info. I did still have 37.7 fever this morning, so back to 60mg for 5 days. I am not happy, but I realize there  are lots of illnesses that are so much worse than what we have. Next time I will make sure I go a lot slower when I get close to 30. My rheum wants to do another MRA to get confirm GCA. I am hesitant, since it is expensive and will likely again be after many days on 60mg. We did an MRA in September, negative and a biopsy after my left eye darkened, also negative, because it was after 6 days on 60 mg... 
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