Had appointment with occ health this morning. Woke up feeling dreadful and very tired......not a good start ! He is happy for me to try a phased return starting next week. Will have to keep a "stamina diary" and then negotiate with my manager how many hours a week I'm up to. Saw the hepatology consultant this afternoon. Bloods still in range, but they have decided to change me from azathioprine to mycophenolate mofitil due to the side effects from the aza. The list of side effects from mycophenolate looks just as worrying, but hopefully it will suit me better. The good news is, I don't have to increase the steroids to effect the change, just literally swap drugs from tomorrow. Will have to have bloods done again on Friday and return to clinic next Monday to make sure all is well. (it better be as I will be working on Tuesday!!). Now just have to see gp tomorrow to get officially signed back to work, then my manager on Thursday to work out hours.........simples!!

So.......Christmas is over and I'm still knackered. Managed to have a lovely time with friends and family and even had a glass of bubbly. Healthy diet and weight gone to pot though.Bloods were done Friday, and will get results tomorrow at hospital appointment. I can't say I feel much better on the reduced azathioprine, but am trying to convince myself that I do. This week I see the occupational Health Doc at work to discuss phased return, the hepatologist, my gp, and my manager......hopefully by Friday I will know what the plan for next week is. Have decided to just go for it and hope for the best (if they will let me) and try to appear well and able to return to work, if I don't try I won't know. Am rather anxious about it as I think I still look awful, and often feel exhausted (no chance of a siesta in a citroen c1)!

Have been on the lower dose for 4 days now.Already feeling less nauseous, but have to say I feel just as knackered. I guess as it took weeks to get in my system it will take some time for things to improve? Had my hair cut/coloured today and hairdresser reports theres not so much falling out!! Still feeling optimistic about a return to work in January.......but have only just realised that it is only a few weeks away now. Time for positive thinking and determination!

Ha Ha Ha!!! Clinic went well. Consultant OFFERED to reduce azathioprine to 50mg due to all the side effects I'm having. He said they were classic and as my bloods are now normal, what I am experiencing has to be either side effects or something else is going on. When I said the last time I asked for it to be reduced I had been told what I was experiencing was NOT side effects,but due to the condition,  he said that my bloods were not in normal range at that time.As I weigh 60 kgs and the dose is calculated by 1-2 mg per kg of weight, and only comes  in 25mgs tablets, he felt it was worth trying just 50mg! So.........I'm to have 50mg aza and continue on 5mg prednisolone, and this will be my maintenance dose for at least a year. Bloods again in 2weeks, and if there is any sign of a flare, then pred to be increased, then either aza increase or change to another immunosuppressant. Can't tell you how pleased I am with the decision. Hopefully all will go well, but at least if it doesn't, then we have tried the reduction before going through the whole rigmarole of changing drugs. Here's hoping for a happy and feeling well Christmas!

Amazing! Yesterday I received a letter from the hospital asking me to attend the "Healthy liver clinic" on Wednesday next week.....this was to discuss my progress POST TRANSPLANT!! Perhaps I'm having a transplant Monday afternoon and they will review the progress Wednesday?! I have left a suitably stroppy message on the secretary's phone. You just don't need this sort of admin mistake when you're trying to deal with this. On the advice of a fellow sufferer, I am going armed with various research papers tomorrow in a final bid to persuade them to reduce the azathioprine back to 50mg before we go down the drug change route. Just can't get my head around going back to square one (even if it means continuing side effects by staying on the aza)......am very nervous about risking worse effects and becoming (more) unwell again. Stopped the omeprazole today as it hadn't made any difference.

Having a rather up and down period over the last few weeks. still getting nauseous and hair still dropping out. Bloods were done today and I'm in clinic again Monday. I think I have decided to do the drug swap as there is never going to be a convenient time for this, I might as well just get on with it. I am still aiming to go back to work on a phased return from January 7th ish. I have asked for a part time contract from April, and will use up leave between Jan and then to ensure I never work a full week!! Saw the team I work with yesterday and it felt good to be back among them. Am looking forward to getting back to earning some money again. Had a lovely day today. M took me to the annual candle lit carol service at the donkey sanctuary! For anyone who doesn't know me....I'm donkey mad and we have 2 of our own. It was just magical singing carols in the barn with them all munching their straw and letting out occasional brays....very good therapy.

Can't believe that dropping 2.5mg pred can make much difference to how I feel, but am more tired than ever. Still very nauseous and retching mid morning despite the omeprazole.....guess that means its the azathioprine! Am still trying to get my head around changing it to another immunosupressant, can't say I'm keen, but guess it will have to be done. The question is, when? Before Christmas and risk being unwell during Christmas? Or in January and risk the planned return to work? Bollocks.......could really have done without this. Answers on a postcard/email/comment please!!

Saw the hepatologist this evening. Bloods in normal range now.......hooray! Can stop phosphate, clotting now normal, and can reduce prednisolone to 5 mg from tomorrow. However, when I said about the nausea and retching, she felt I may be experiencing stomach problems from being on steroids. So now I'm on omeprazole to see if that settles it. If it doesn't, then the cause may be the azathioprine. I also mentioned the hair loss. This, she felt was definitely the azathioprine, and where I had been thinking it was a small price to pay,(I have a lot of hair!) she felt strongly, that as I was going to be on an immunosuppresant for life, then we should try a different one. M and I were quite shocked as we had not expected that response. She offered to change it today, but I couldn't take it in.Changing it will mean increasing the steroids again whilst the change over happens (in effect, going through the last 2 months again but with another drug). I feel like I have spent 2 months getting used to this drug and was prepared to put up with any side effects, but now I don't know what to do. She agreed to let us think about it over the next two weeks. The never ending tiredness is "the main symptom of liver disease" but should improve in time. Now off to research MMP and 6MP to see what wonderful side effects they might give me. Think I will just have to bite the bullet where work is concerned and give it a go in January........however I'm feeling and whatever drug changes are going on. Sick pay barely covers utility bills, and gets stopped in February anyway, and I am not going on disability benefits.