For anyone who hasn't lost the will to live yet and who is still interested............feel like s...! Prednisolone was reduced to 7.5mg following last hepatology appt nearly 2wks ago. I was already tired and not making much progress on the stamina front.......now its worse. Needing a rest every day, nauseous mid morning for about 1-2 hrs, and appetite reduced. Aches in joints, hair falling out (from head but growing on face..lovely) bruises and capillary breaks all over my body, discomfort in liver (still swollen) and intermittent cramp in feet. Guess this is how its going to be so had better get used to it. Trying to rest as instructed at clinic, but am behind with lots of things and finding this stressful.Getting harder to stay positive. Am beginning to doubt return to work in January. Bloods were done Friday , clinic on Monday.

Just back from hepatology clinic. Mixed news. Bloods still doing OK, and phosphate has improved the cramps, so am to continue with that for a few weeks. However, they flatly refused to reduce azathioprine due to risk of causing a severe flare up. Am only on a lowish dose for my weight anyway, and got the impression that they would rather increase it............so I shut up fast. Had more bloods taken whilst there and if still in range I'm to reduce the steroids to 7.5mg from tomorrow.The feedback regarding feeling less well over the past 3wks, is that it's as a result of the reduction in prednisolone. More specifically, I had been functioning so well due to the high dose of steroids, (ie it was the drugs making me feel well) but actually it will take several more months for my body to recover, so I wasn't really "better" it was just the steroids making me believe that I was. The azathioprine can take several months to "take over" from the steroids. I have been reminded how severely ill I was "just 6wks ago" and advised to rest and give my body a chance to recover. I should apparently only be doing what I "have to do" otherwise resting! I did point out I have 5 dogs, 2 donkeys a pony and a pet care business.............it didn't wash. So from Wednesday (too busy tomorrow) I will take heed.
The right upper quadrant discomfort is due to continued swelling of the liver which (due to how severely ill I was) will take months to settle and is quite normal..........that's OK then.

Still whinging, but trying to motor on through. Bloods were done Friday, Hepatology clinic tomorrow. Plan to ask if they will reduce the azathioprine and see if my bloods can stay in range on the lower dose as I think  the higher dose isn't suiting me. I can only ask. Also want some answers about the liver discomfort/swelling, and the cause of it. Have asked M to come tomorrow for moral support!
Made 9 pots of jam last night and was feeling very pleased with myself............until I got up this morning to find they hadn't set!!!!!

Haven't written for a bit. Partly as I couldn't be bothered, and also as have been feeling rather negative. I've been on the increased dose of azathioprine for several weeks, and since then I feel more tired and not as good as I did when I was only on 50mg. I don't know if this is the cause, or if (probably more likely) it's that the steroids are now at a much lower dose. Whilst steroids have lots of horrid side effects, they do make you feel more energetic. In the last few weeks, I have stalled with progress. I am needing an afternoon nap, and struggling to get out of bed when the alarm goes off in the morning. I'm aware of every ache and pain, and running out of steam by lunchtime. My hair is falling out and I'm finding looking in the mirror difficult. I have had constant discomfort where my ribs dig into my (presumably still enlarged) liver, so cannot sit/lie comfortably. I'm beginning to wonder if I will be able to cope with  return to work if I don't get moving forward again soon; and that is not what I wanted to face.
On the plus side,
1) cramps in hands/feet are reduced since starting phosphate 10days ago
2)Am using my new juicer (not so keen on veg juice though)
3)weight about the same as before I was taken ill
4)Am driving/dog walking/managing most of donkey care
5)M loves me despite my appearance and constant whinging

Busy day.....but lovely and sunny. Saw my hepatologist this afternoon. Liver bloods are just about normal now! However, as I've not been as good over the last 2wks (cramp/headache etc) no reduction in steroids today. He wants to slow it right down. I'm to stay on 10mg pred for the next two weeks, then any reductions from now will only be 2.5mg at a time. The azathioprine is doing it's stuff so that dose stays the same. He's added in phosphate twice a day to try to deal with the cramp. The cramp is likely caused by scarring (cirrhosis) of the liver. On biopsy it showed I had bridging fibrosis.This occurred when I was severely ill and jaundiced, but may have been happening prior to me becoming unwell. The general medical view is that this is not reversible, but he thinks otherwise........hope he's right.People with a diagnosed auto immune condition are more likely to develop other auto immune conditions at the same time, and this is why the blood monitoring is done so closely. He had no idea why I should be testing positive (leukocytes/protein/blood) intermittently for UTI, but suggests I get the surgery to send the next pos sample to test for white blood cells. Maybe to do with the drugs he thinks, (like every other wacky thing going on with my body at the moment). NO BLOOD TEST THIS WEEK HOORAY! Bloods and review in two weeks time............progress. Feeling very tired tonight.

Busy day, but got through without a rest again. Did another big dog walk this morning, then just housey stuff all day. Had a go at the ginger zinger..........nearly blew my head off.......less fresh ginger next time I think. M keeps telling me to remember it's doing me good. Enjoyed a massive roast tonight (with loads of veg!), appetite is really good despite meds. weight creeping up, but not yet back to pre illness weight. Cramps on and off and still testing positive for UTI, but asymptomatic?! Due to see hepatologists tomorrow so will add to list of questions. Lovely to get comments on blog..reminds me I'm not alone in this.

Have tried experimenting with my new healthy juicer which was a birthday present from M !!! Tonight's speciality "hard as nails".....containing, 1 raw parsnip, 1 bag of watercress and 3/4 cucumber....mmmmm (ish). Apparently full of potassium and good for me. Came out bright green, but was palatable over ice. Tomorrow am planning to try a ginger zinger! Have bought half of tescos fruit and veg aisle in preparation. Have been getting increased cramps in feet and lower legs and a lot of discomfort in RUQ again. Hair not in good condition, bruising easily, and now have downy facial hair.......oh the joys of steroids. Bloods were done Friday and am due in clinic again Monday so will see how the swap to azathioprine is going. Managed a big dog walk today so am feeling pleased with myself. If I'm honest, I'm really pissed off and fed up with this whole malarky.
 I know I should be grateful and lots of others have far worse things to deal with, but I'm still finding it hard to accept this. It just feels like an endless round of blood tests and hosp appointments with no end in sight. I wish it was something that was just going to get better and I would be able to look back and say I was ill, but now it's over and I'm back to normal. Instead, I'm constantly trying to be positive and fighting the urge to be negative and to stamp my feet and say it's not fair. Feel like a child, somehow, knowing others have far worse to bear is not helping me. Am frightened of not knowing what the future may hold.