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Oh dear!

Posted , 9 users are following.

Whisper2003
Whisper2003

The day after my last post was feeling a little down ( heart surgery) so after lunch laid on bed with relaxation CD. half way through went into AF and ended up in resus, again. They dosed me with beta blockers which lowered it, but a bit too much! Anyway, I spent 4 days being tested for everything and they found abnormalities in liver enzymes (ALP). They did an ultrasound which showed nothing and advised my GP to refer to gastroenterology if not clear in a week. Still on 12 mg pred. Tried to reduce to 11.5 but too painful. Seeing Rheumi mid May who wants me on methotrexate but still have raised ALP (whatever that means!). GP said to test again in a month!

4 likes, 18 replies

18 Replies

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  • judytal
    judytal Whisper2003

    Posted

    Sorry to her all your challenges, whisper.   I will Remember you in my prayers.   

    Take care of yourself.  

  • pat38625
    pat38625 Whisper2003

    Posted

    Hi Whisper, am so sorry for you. You really are having a time of it, dear love you.  Sending you loads of healing and positive energy.   Pat
  • pat73046
    pat73046 Whisper2003

    Posted

    So sorry to hear if your pain and illness. I wish you great days of sun and rest. Please know so many are wishing you positive things and prayers for your recovery. Thank you for letting us know. Sincerely Pat
  • bronwyn97278
    bronwyn97278 Whisper2003

    Posted

    Gosh, you have been through the Wringer....so sorry!!  Let's get your heart and AF under control first, as that's very important....no good worrying re RA if heart not working properly....keep us informed on this one, please?   Bron
  • linda82701_USA
    linda82701_USA Whisper2003

    Posted

    Whisper2003, So sorry to hear of all your medical issues.  Wish you well.
    • Whisper2003
      Whisper2003 linda82701_USA

      Posted

      Thank you all so much for your support. I'm hoping it was just a one off post operative AF as its all healing fine. No pain though which is good. Just PMR type pain if I reduce so will stay at 12 until the next insistence from GP/Rheumi. I am getting central under rib pain which I think is gastric. Lansaprazole was prescribed but causes extreme trapped wind - painful. I am eating  plain yoghurt and Manuka honey and just trying slippery elm. Zantac (Ranitidine) doesn't seem to help either. Sorry for the moan! Feel better anyway with your kind wishes!
  • margaret22251
    margaret22251 Whisper2003

    Posted

    Hi whisper, sorry you are still having trouble, thinking of you lots and sending big hugs, take care
  • tina-uk_cwall
    tina-uk_cwall Whisper2003

    Posted

    Hello whisper, so to hear to you not feeling too well. With regards to your liver, I too have problems with mine. The powers that be think I may also have an auto immune liver condition but will not know for sure until my preds are reduced to such a level that the liver problem is truly revealed as it is also a condition that U.S. Treated with preds.

    what I do know is that the liver us a tricky little bugger and many readings and scores following a test go be back to normal within a few weeks. I know because this is the situation I am in presently. All my results were either good or progressing that way until my last but one test when particular counters were raised again, my Dr didn't want to panic and so retested me 2 weeks later and once again these particular counters are looking much better and heading in the right direction. Yesterday when I went for my results a locum told me that sometimes if the pile ducts on that particular day are a little blocked that could also result in a worrying reading.

    i definately would not be inclined to reduce at the moment as you are far too anxious. Leave things to calm down further then try. As for the mtx I would not want to start those meds until I had a clean bill of Heath re the liver. All the best, christina 

    • Whisper2003
      Whisper2003 tina-uk_cwall

      Posted

      Thank you, Christina, that's interesting with your liver results. At least it gives us an excuse NOT to use methotrexate! But what about  the odd glass of wine? Is that gone too?

      I am catching your hugs, Margaret. Thank you so much 

    • EileenH
      EileenH Whisper2003

      Posted

      For both of you - ALP is commonly elevated in PMR. No idea if mine still is but it was at the beginning of the major flare 5 years ago - I had a transient global amnesia (tempory loss of short term memory) and the ALP showed up so the consultant of middle-eastern extraction decided I was an alcoholic and that was the cause of the TGA! My GP thought it was hilarious, I was less impressed!

      Whisper - how very disconcerting! Are you just on beta-blockers? I'm on a beta-blocker, an angiotension II inhibitor - both for heart rate and BP - but also on propafenone, an antiarrythmic, which works brilliantly (and an anticoagulant as well of course). No problems at all now. I was told that the cardioversion thing is all very well but doesn't last long and often ablation is also unsuccessful so they reserve it for cases that don't respond to medication. I think I prefer the Italian attitude to a/f since all the people I know of in the UK seem to have ongoing problems.

      Get better soon!

    • tina-uk_cwall
      tina-uk_cwall Whisper2003

      Posted

      Sorry whisper, can't help you with the wine question. Don't touch alcohol, can't stand the stuff, but I don't see why the odd glass would cause a problem. There is a condition called alcohol fatty liver and if you don't suffer from that then I can't see that there would be a problem, cheers! Christina 
    • Whisper2003
      Whisper2003 EileenH

      Posted

      I didn't know about raised ALP in PMR.It hasn't been raised before now and I did have the odd glass of wine, but not now. I'm on low dose aspirin, beta blocker and Ace inhibitor. Had cardioversion before but my new mesh patch on the heart defect prevents it. Wouldn't want it disturbed after all that regardless! 

      I forgot to mention - the nurse said my BMI is too low so she will refer me to dietician. Wrong subject for me I think! She even checked to make sure I was eating all my disgusting hospital food. I eat loads every day and was starving in there so would've eaten anything anyway!

    • EileenH
      EileenH Whisper2003

      Posted

      Quite! It might be worth asking about medication - the beta blocker and ACE inhibitor won't control the arrythmia as I understand it. I turned bright red and itchy with the ACE inhibitor!

      No - too low a BMI eh? I'm up for a fat transplant if you like! My niece was in hospital a few weeks ago, she has cystic fibrosis and is like a streak of pumpwater! She put up piccies of the food on Facebook - all beige and all disgusting and it was supposed to be the high calorie version.

    • Whisper2003
      Whisper2003 EileenH

      Posted

      One of them is creating havoc with my stomach - but who knows which. The transplant would be good, thanks! I got excited after the op when I noticed my fat legs, made my hubby take a picture as they've always been scrawny. Unfortunately the diuretic got rid of them!

      Despite the diet recommendations on the posters the food offered is distinctly lacking in fruit and veg. I did request eggs and bacon  for breakfast but was given the usual cornflakes. I did request a cheese salad but it was half a plate of grated cheese with a tiny pot of salad and two sachets of salad cream.

      1st May is my follow up with heart team to discuss, hopefully, the medications. Until then no one will adjust any of them. They had plenty of questions about the pred though - and some of them had not heard of GCA though most had of PMR. Bit disappointing when you have to keep explaining yourself!

    • EileenH
      EileenH Whisper2003

      Posted

      Tell me about it - though there was no need for that when I was in. The head honcho in medicine here has a special interest in GCA/PMR - because he trained with someone whose "thing" it was. The juniors were a bit different...
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