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Breathing problems all come to a head!

Posted , 7 users are following.

marilyn84391
marilyn84391

well, feeling a bit silly now after saying last time how much better I felt. I'm afraid it was very short lived as the fevers I was getting just got worse and Thursday eve my temp was sky high and I couldn't stop shaking worse still I was really struggling to breathe. 

Hubby took me to A&E and they kept me in overnight and put me on  intravenous antibiotics. Had all the tests I had previously! The chest X-ray showed it was pneumonia. They kept asking if I smoked, I said why, do you think it's copd? I told them I didn't, only passive when nursing in mental health in the 80s and 90s. As I can't remember the last time I had a cold and don't get bronchitis all the time they say it's unlikely, still said if symptoms are still there after a month I should have a lung function test. Fingers crossed on that one! Have some much stronger antibiotics now and feel like they're shifting things but won't speak too soon! Still feeling pretty poorly and can't even climb the stairs without feeling weak and dizzy, in fact I really can't do anything. Should have listened to my body long ago, no choice now but things could be a lot worse. At least the pmr is behaving itself! See the GP again next Thursday for original tests. The crp level was 7.9 in hospital not sure whether that's normal or not, only knew my esr was 35 at the beginning. I'm pretty new to all this. Hope I have good news next time I post and I can start reducing from 15 again. Should I do it in 1mg steps or be more drastic? Any advice appreciated thank you.

4 likes, 12 replies

12 Replies

  • pat38625
    pat38625 marilyn84391

    Posted

    No need to feel silly at all Marilyn with PMR/GCA it's quite common to panic especially at the beginning and not knowing enough about the condition also side effects from pred.  It's good that you went to A&E and were kept overnight.  Someone more experienced than myself will be along to help you with the reduction of pred.  All the best.  Pat
  • tina-uk_cwall
    tina-uk_cwall marilyn84391

    Posted

    Hi Marilyn, gosh, what gave you been through? At least now you have antibiotics and let's hope that clears things up. Just make sure you take things easy in the near future.

    personally, whilst you are not feeling too good I would not reduce and that could be anything up to a month. You want the chest infection to clear up totally before you add extra pressure on your body by reducing the preds. I reduced from 15 to 12.5 as is the standard reduction, however some do reduce by 1mg every month until they get to 10mgs then it's the dead slow and almost stop reduction method. But let's not think about reducing yet. Get the lung problem sorted out first, then take it from there. All the best, tina

    • marilyn84391
      marilyn84391 tina-uk_cwall

      Posted

      Yes I shall certainly take things more easily now Tina. Don't really have a choice. I also reduced from 15 to 12.5 in the first month first time round but will definitely make sure I'm ready next time and have to get myself feeling a lot better.
  • Susanne_M_UK
    Susanne_M_UK marilyn84391

    Posted

    Poor you.

    CRP of 7.5 is normal, but you may find that if you have a blood test now you are home that your ESR and CRP shoot up.

    That's what happened to me after a spell in hospital for a lung infection in March and I had to go back up to 40mg. The infection will lower your resistance to PMR/GCA. I don't know whether you have PMR or GCA, but suspect it's NOT due to your current dose of Pred? (I have GCA).

    You will find that it will take you quite a while to start feeling ok again, your body is battling the infection and the ONE, besides, antibiotics may you very tired too.

    Take it slow and easy and just sleep and rest as much as you can and you will slowly start to feel better.

    Don't reduce the Pred now, your body has enough to cope with. And ask for another blood test next week.

    • marilyn84391
      marilyn84391 Susanne_M_UK

      Posted

      Thank you Susanne, yes I have pmr diagnosed in May. I realise it's going to take a bit of time to get over the lung infection  having had viral pneumonia 15 yrs ago and took 4 months to get back to normal! 

      Just hope it doesn't interfere to much with the pmr. I just really need to get well again!

  • EileenH
    EileenH marilyn84391

    Posted

    I've not been around (on holiday) but we do say you shouldn't blame everything on PMR and pred - they don't excuse us from developing other things! Adult pneumonia is a sneaky beast and often goes on for ages before the patient realises they are ill! 

    Anyway - you went to the right place and they got it right too. Here's hoping for a plain-sailing recovery!

    • EileenH
      EileenH

      Posted

      Drat - forgot the reducing bit. Don't worry about reducing until you are well again and DON'T go for a drastic reduction. There is a basic rule of not reducing by more than 10% of the current dose. At 15mg that would be 1.5mg, 1mg is so much simpler! Below 10mg you can happily look at 1/2mg reductions - or 1mg if using the "dead slow and nearly stop" approach which you'll find here:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      in the replies. You can use it from 15mg if it keeps you feeling better - it helps avoid the withdrawal symptoms that many patients suffer. Others are more robust and don't notice a change in dose but no-one can predict which you are going to be.

    • marilyn84391
      marilyn84391 EileenH

      Posted

      Thank you for your advice Eileen, it's so difficult not knowing what causes what. I haven't had any more pain since first taking pred. So not sure whether I'll experience that when I get to the lower doses. I went from 15 to12.5 without any problems but won't take any chances after reading on here what can go wrong, I'll go very slowly. 
    • EileenH
      EileenH marilyn84391

      Posted

      It SOUNDS as if you go slower - but in fact it turns out faster because you have fewer "is it - isn't it" moments leading to going back to the last dose because you have aches and pains that you don't know whether it is the PMR flaring up which means you need a bit more pred or just withdrawal pain - because they are often the same. It is a sneaky trick on the part of pred!
  • LisaCACO
    LisaCACO marilyn84391

    Posted

    ugh, pneumonia! take care of yourself. that's nothing to mess around with, esp in our condition. 
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