It hasn't got any easier and in fact, much worse. I knew the steroid increase wasn't working as I neared the end of the week and wasn't feeling any more energised. In fact, the ALT that was done on Friday, was at 243(normal range 7-56) and the AST risen to 192(normal range 5-40). This is hugely disappointing. Seen at hosp this afternoon, and they have stopped the mycophenolate in case this is causing the rise. Steroids have been increased again to 30mg daily and I now have alendronic acid added to the mix once a week to protect my bones from the steroids. Bloods are to be redone on Thursday this week and then further decisions made. They may do a further liver biopsy to see whats going on. At present, I am falling into the "30% of difficult to stabilise patients". Apparently, they should have been only seeing me every 3 months by now.
As far as work goes, I have surrendered and been signed off again, I am just too unwell to function properly. I don't know what the future holds or if I will lose the job I love. Feel like a complete failure, but don't have any reserves left to call on.
Hi penny, this makes me so sad to hear this I really thought you had cracked it, my stay in hospital has been not to bad, three days on I'v prednisolone then back on oral steroids over the weekend, alt has come down to 195 so the consultant was happy to start me on mycophenolate twice a day starting at t time tonight, she has told me not to be too disheartened if numbers start to rise again with the change in drugs but hopefully things will settle, getting home tomorrow and it's my birthday so looking forward to it, I really hope things get sorted for you soon, take care keep in touch xx
ReplyDeleteJust shows you doesn't it! I thought I'd cracked it too. I'm so glad things are more positive for you, you must be really pleased. Have been thinking of you on and off all week. Hope you have a super birthday and feel well enough to enjoy it x
ReplyDeleteJust to say that I am thinking of you both. I hope your results have improved Penny. You are having a really rotten time of it and I really hope you both start to show signs of improvement soon. Penny, have you thought about asking if you could try a 50mg dose of Aza? I know they took you off it but you may be ok on a lower dose. It's just a thought. All the best,and hope things are not too soggy where you are, your donkeys must have turned into mud monsters!! Joxx
ReplyDeleteThanks jo x had bloods this morning so will know tomorrow. Everything is crossed! As far as the azathioprine goes, they had tried me on 50 before they stopped it . Whilst it didn't suit me, at least the bloods were normal...I'd give anything for that again. Just feels like it's all gone tits up, wish they had never changed it really.
ReplyDeleteI really hope your levels have gone down tomorrow.. It may be worth suggesting going back on the Aza, if my memory serves me right, you hadn't been on the lower dose for that long? As it takes 8 weeks or so to get into the system, it does take a while for the side effects to lessen. I can understand how worried and fed up you are feeling. It is not fair! Did you have another read of that article? it may help a little. Good Luck for tomorrow. I hope the steroids are not giving you too many side effects. they usually get rid of the nausea so at least you won't be feeling so sick? I will be thinking of you tomorrow. Jo x
DeleteAs always, thanks Jo x I will re read the article tonight, then see what he says tomorrow. I don't have much nausea, but sudden retching when teeth brushing!! No energy/stamina, but joints/muscles much better. Will blog tomorrow once I know results. x
DeleteHi penny, everything crossed for you for tomorrow, I really hope things are improving for you, my feeling good didn't last very long, got up yesterday feeling really awful, headaches body ache, nausea like I've never experienced in my life, my mum couldn't believe how bad I looked when she popped into mine, every time I moved I thought I was going to be sick and I could hardly keep my eyes open all day and still slept from half eight last night until nine o'clock this morning, haven't got a clue what's going on with me, it could be the grange in steroids or the mycophenolate or just the bloody aih playing up who knows, bloods done on Tuesday so might have a clearer picture then, things have got to start going our way soon ( please ) take care xx
ReplyDeleteThanks Colleen x Don't despair, I felt very sick/unwell when I started the mycophenlote, but the worse was over in about 3-4 days. How come they didn't try Azathioprine first? Fingers crossed for you as always x
DeleteHi penny consultant felt the aza could take too long to work for me but at least it is there as an alternative if the mmf doesn't do the job, hope all goes well at your appointment today everything crossed take care xx
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