Wednesday, 7 May 2014
Seen by proff Cramp in clinic this morning. LFT's still abnormal, so prednisolone to remain at 15mg for a further 3weeks, and Azathioprine to be increased to 75mg daily from tonight. He is aiming for me to be on 100mg aza eventually. I'm not thrilled. I was under the impression from the consultants that they would aim to keep me on 50mg aza as maintenance dose (I know this is low, it should be 1-2mg per kilo of body weight, and I weigh 62kg)its just that last time (Oct/Nov) I was on 75mg, I became very unwell. I'm scared. I have a plan for return to work 1st July which is only 7 weeks away. This time will be make or break as far as my job goes. At the moment, I don't feel too bad. I have a strict regime of diet/rest etc and it seems to be working. I hadn't realised that there were a load of other tests that were still abnormal, I had only been concentrating on the AST/ALT. He won't reduce the pred until the aza is doing more of the preds work, and even then it will only be by 2.5mg at a time. So from tonight, I risk nausea etc again, he say's to ring if it's unmanageable................not sure what plan b will be if that happens.
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Hi Penny, Don't be too disheartened as the other LFTs will take longer to return to normal. As long as the ALT is returning to normal which it is, it means that you are responding to the treatment. I hope you don't feel sick again on the increased Aza but if you do make sure you ring him straight away. It will just mean a longer period on the Pred but if that means you are able to eventually manage on 50mg of Aza it is prob worth it. Also, the Pred will be helping the liver to recover from the severe inflammation that you suffered. As long as the other LFTs are not going up. I reckon that by the way you are going , you should be able to manage the return to work as long as you keep up the rests when you can. I often think of the fact that if I had been able to tolerate 100mg of Aza, I would now unknowingly be on double the dose actually needed to control the illness. The fact that you are feeling better is so positive so have faith and don't worry if you can't tolerate the extra Aza as it will just mean longer on the steroid and 15mg is not too bad. I hope you are all ok, have been thinking about you at such a sad and difficult time and hope things are not too bad. I am sure your donkeys are a great comfort and distraction. Have a good weekend. Love Jo xx
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DeleteThanks for this, it's reassuring to know 50mg might do the job long term. I have been V nauseous at times over the last few days, but I was for a few days when I started 25mg, then again when it went to 50mg, so I'm hopeful this won't last long. As for the donkeys..............the naughty pair had escaped though the electric fence this morning and had been gorging on lush green grass half the night!!! Had to bring them into their yard today to give their fat tummies a rest.....they were not impressed!
Oh no!! Naughty donkeys! Made me smile though. I hope you are feeling ok on the increased dose. It is a lovely day here and I have just got back from a walk by the sea. Hope it is the same with you. Love Jox
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