Seen by Proff Cramp today. Pred to stay at 12.5mg for another 3 weeks, then reduce to 10mg.Azathioprine to stay at 75mg. Don't have to go back to clinic (or have bloods done!) for 6 weeks. Everything stable biochemically, so he's happy that things are finally settling. The price to pay however, is all the side effects, which I have to say, I find debilitating. I'm still needing to have bed rest each day, and find I ache constantly and have no stamina. If I push myself and do too much, I have to pay for it for days afterwards. My skin is still a problem, but if I take antihistamines I just fall asleep! I am now finally accepting that this is with me for life, and I will never be my old self again. I will not be well enough to return to my job next month. To perform my role effectively, I need to be able to manage to juggle far more balls than I currently can. It's not just about staying awake/mobile for 4 hrs a day, it requires much more, and I know I just cannot do it.

Alice and Bobbie the donkeys (for Jo)!

Alice is the grey one (10yrs) and Bobbie is her daughter (6yrs). Alice is sporting a liberal covering of sudocrem for treatment of rain scald which she had earlier this year!

This is what you look/feel like when you eat too much spring grass in one go..............or did Kaspar steal my steroids??!!
Things going ok except for intolerable itching. This only started about 2 weeks ago, and is largely on my forearms, but also neck/trunk. Not sure if it's to do with increased Aza? Or photo sensitivity from the aza? Colleen suggested eurax cream, which is brilliant, but would like to know the cause, and why now if its the aza? Had been using factor 30 on anything exposed from the minute the sun came through a few weeks ago. Come on Jo...........you always have the answers!!!

Well it turns out that the blood results that were given to me yesterday were from a previous date.............not the 16th after all! So, when seen in clinic today, fearing the worst, I was pleasantly surprised to be told that in fact, my bloods are nearly normal, and only slightly in the red now!! I had spent 24hrs convinced it was all going wrong again. As it is, they have agreed to reduce the pred a tiny bit to 12.5mg, and leave the azathioprine at 75mg. I don't have to have bloods or be seen for 3 weeks....hooray. Very relieved by the news....so treated myself to treacle tart for tea tonight.

Ok........why is it that when there is 9 miles of beach, they have to sit on top of you????!!
Had a lovely break in Dorset, lots of walks and lots of rest. All over too soon, although always good to be home.
Had bloods done just before we went on 16th. had them done again today, and the results of the 16th were really bad news......ALT rising again and back up to 79. Will get todays results tomorrow in clinic........can't say I'm looking forward to it. I'm still on 15mg pred and 75mg Aza. My skin is itching all over and forearms covered in marks/discolouration. Another tooth broke yesterday (thank god they have been back teeth!) Joints ache and am very tired, but hey...............no nausea. Face looks like a hampster, hair falling out etc etc etc....... could live with all of this if the drugs were doing what they are supposed to be doing. Just can't stand this constant battle with endless side effects when there doesn't seem to be any benefit. Once again, am in this nightmare of not being able to plan. I thought I was back on track, and am supposed to be going back to work in about 5 weeks....come on Jo....tell me it's all gonna be alright!?

Well.........The sun has got his hat on....hip hip hip hooray!!! Lovely in Cornwall today. Feeling a bit tired and achy, but nausea only lasted a few days when the Aza was increased, so VERY happy with that. Bloods on Friday, then speaking on the phone to hepatology on Monday as I will be away in Dorset for a week.............more Hoorays!! My lovely sister will be in charge of naughty donkeys and left behind dogs, as we spend a week sleeping, eating and playing with the three that are coming with us. Can't wait, seems like forever since we had a break. The last holiday was cancelled as I was so unwell/in hosp. So much has happened since then, and none of it has been good.

Ok.............not keen on the increase dose of aza so far. Have been very nauseous and upset stomach on and off since Weds night. Today, I had to attend a review meeting with work at 9.30 am, which meant getting out the house at 8.45am with no breakfast (couldn't tolerate) and feeling very sick and teary on the drive there. However, managed to wing it and convince them all was well, and I remain on course for a phased return in July. They have been incredibly supportive and patient with me, I'm determined this is going to work this time. They are even willing to change my base to reduce my driving and are happy for me to aim for just mornings initially. Am sticking as much as possible to my rests in the afternoon, and if I really don't have time, I do a meditation for 20 mins which seems to work well too. Diet is a bit haywire at present, but I think thats due to the increased aza, which will hopefully settle down soon. Considering the sort of few weeks I've had, I'm amazed I'm doing as well as I am....really can't complain.