Well I haven't written this for a while due to one thing and another. Over the last few weeks, we have been literally so busy, I just haven't had the time to do anything but essential stuff. I have, however, done my best to stick to the afternoon naps and the healthy (ish) diet. My latest bloods were really positive, with AST at 58 and ALT at 57!!! No major, unmanageable side effect from the azathioprine, which is now at 50mg daily. The pred is down to 15mg daily since Thursday, and I don't have to have bloods or be seen for 2 weeks!!! So all in all, everything is rather positive on the AIH front.
However, very sadly, my Mother on law passed away yesterday morning. She had been unwell for only a week, but they hadn't been able to reach a diagnosis. Unfortunately, on Thursday evening, she was taken to hospital, and they found the cause, but there was nothing that could be actively done. She died peacefully and pain free with all her family around her. To say there will be an enormous hole in our lives and hearts would be an understatement. We are totally bereft and can't imagine life without her.
Saturday, 26 April 2014
Monday, 14 April 2014
Lovely sunny day again in Cornwall. Feeling a bit better and have a little more energy today. ALT now 79 (even with only 25mg pred!) They have reduced it to 20mg from tomorrow, and to stay on Aza 50mg for now. Bloods again next Tuesday and to be seen again next Weds 23rd. Thats 3 blood tests in arow that haven't risen.....dare I hope we have turned the corner? I certainly feel a bit better, apart from the never ending cramps in fingers/toes. The routine of having an afternoon nap is the way to go I think. Just have to be really strict and make myself have the rest even if there are other things to do (always!). Vit D results are fine, so I guess the only reason for the cramp is the steroids flushing the potassium out my body, hopefully as the steroids come down this will improve. Heard from the eye hospital re: increased pressure, apparently I won't get an appointment until at least June.......the referral is marked urgent, but apparently they don't view glaucoma tests as urgent....give me strength!!!!
So let me see.....on the negative side..
I have a life long condition that I will have to learn to live with
I've had at least 50 blood tests since last September
My new occupation is attending clinics/obsessing about my condition
I have gained weight
My clothes don't fit
I have a hairy face
My hair is falling out
I look like a hamster
I am covered in bruises
My joints ache most mornings
I'm tired often and have little stamina
I have cramp often
I have glucose in my urine
I have raised intra ocular pressure
I have stomach/reflux problems
My sleep is disturbed
I have URQ discomfort all the time
My bones are at risk of fractures
I've been off work for 9mths...and counting
I'm on a benefit for the first time in my life
On the positive side....
I'm alive
My bloods are improving slowly, so risk of cirrhosis is lessening
I have drugs to counter most of the side effects of the steroids (although they also have side effects!)
I have a lovely home/partner/son/family who are putting up with my moaning
I might just make it back to work in July after all
So let me see.....on the negative side..
I have a life long condition that I will have to learn to live with
I've had at least 50 blood tests since last September
My new occupation is attending clinics/obsessing about my condition
I have gained weight
My clothes don't fit
I have a hairy face
My hair is falling out
I look like a hamster
I am covered in bruises
My joints ache most mornings
I'm tired often and have little stamina
I have cramp often
I have glucose in my urine
I have raised intra ocular pressure
I have stomach/reflux problems
My sleep is disturbed
I have URQ discomfort all the time
My bones are at risk of fractures
I've been off work for 9mths...and counting
I'm on a benefit for the first time in my life
On the positive side....
I'm alive
My bloods are improving slowly, so risk of cirrhosis is lessening
I have drugs to counter most of the side effects of the steroids (although they also have side effects!)
I have a lovely home/partner/son/family who are putting up with my moaning
I might just make it back to work in July after all
Tuesday, 8 April 2014
Had the increased dose of aza last night..........fine until about 10pm, then nausea kicked in. Very little sleep. Had to go back to bed this morning as I was so tired. Got up again at lunchtime and felt fine again! Glorious sunshine in Cornwall today, such a pleasure after days of rain/fog/wet dogs/miserable donkeys!! Spent the afternoon with the donks re doing their electric fencing to create a new paddock for them to play in. They looked on in anticipation waiting to be let out, then went wild inspecting the new area. I have just been down to bring them in and found them climbing right up on the stone wall between us and a housing estate.....peering into peoples kitchen windows! They have acres to play in and they still have to be naughty....it took carrots and ginger biscuits to persuade them to come in for the night.
Am hoping the nausea is less tonight, last week, it only lasted a few days then settled down again. Oh, nearly forgot, went to the dentist today and my teeth are fine...............at least thats one bit of me thats not going wrong!
Am hoping the nausea is less tonight, last week, it only lasted a few days then settled down again. Oh, nearly forgot, went to the dentist today and my teeth are fine...............at least thats one bit of me thats not going wrong!
Monday, 7 April 2014
Seen in clinic this afternoon. Bloods remain stubbornly the same. No result on the vit d yet. They have reduced the pred to 25mg from tomorrow, but doubled the azathioprine to 50mg , so I guess I can expect some more nausea (just as I had got over it!). Hair already falling out again, and only back on it 1 week. I have actually been feeling much better the last few days, despite seriously overdoing things on Saturday.
Any of you that haven't had your phosphate levels checked might want to. Mine have been very low on and off since November. I didn't realise (and they didn't join the dots up either) that one of the main issues with low phosphate is lethargy/tiredness. Every week that I'm seen I say how tired I am, I can't believe they didn't think to explain this, or to prescribe phosphate sooner. I'm hoping that the improvement I've had this week is as a result of the twice daily (tastes foul) effervescent supplement I'm now on. I know it's wishful thinking, and I know tiredness is one of the main features of this condition,but wouldn't it be wonderful if something so simple makes a difference?
Any of you that haven't had your phosphate levels checked might want to. Mine have been very low on and off since November. I didn't realise (and they didn't join the dots up either) that one of the main issues with low phosphate is lethargy/tiredness. Every week that I'm seen I say how tired I am, I can't believe they didn't think to explain this, or to prescribe phosphate sooner. I'm hoping that the improvement I've had this week is as a result of the twice daily (tastes foul) effervescent supplement I'm now on. I know it's wishful thinking, and I know tiredness is one of the main features of this condition,but wouldn't it be wonderful if something so simple makes a difference?
Wednesday, 2 April 2014
Have taken 3 doses of aza now, and had forgotten how nauseous it makes you feel. Had to go back to bed for a few hours this morning as I felt so rough. I thought taking it in the evening would be better (less disruptive if I EVER get back to work), but have found myself feeling very sick by 9-10pm. I'm only on 25mg too. Had planned a nice catch up with a friend this morning but had to cancel. Better this afternoon but still feel shattered and cramp in fingers/toes really annoying. Think I will just not answer the phone on Friday if they ring to increase the steroids.........if they can't speak to me, I won't know that they want it increasing will I??
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