Wednesday, 5 March 2014

Seen in clinic. Bloods still high (over 300) but tiny reduction since increased pred last week. have to stay on 60mg for now and have bloods redone Friday then clinic again on Monday 10th. Biopsy appeared to be no worse since done last September, but showed this is a flare of the AIH not a reaction to the drugs I was on. relived things are no worse, but would have liked a bigger drop in bloods!! Lots of Liver/stomach discomfort, so omeprazole increased to 40mg daily.
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13 comments:

  1. Anonymous5 March 2014 at 08:01

    Hi Penny, Gad you have had your results and at least you know it is a flare up rather than anything else nasty, good that there is no worse damage to your liver since last time too. It really is not surprising that you are feeling completely knackered at the moment with all that is going on inside and also outside with all the work and SSP issues. Really hope that goes well and isn't too exhausting for you.So unfair and outrageous that it is such a small amount of money. Hope the Omeprazole helps so that at least you can enjoy food again. Hoping that your levels have gone down more on Monday. It is such a lovely spring day here, hope it is with all of you too. Love Jo xx

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    1. Auto immiune hepatitis5 March 2014 at 12:14

      Thanks Jo yes lovely spring day here too. Enjoyed an hour with the donks and miniture shetland having love and fuss in the sun this afternoon.......real tonic x

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  2. Anonymous6 March 2014 at 05:25

    Hi penny, good news that the numbers are coming down, a little bit is still good, I think it's just us being impatient we want too see big reductions, I really hope your starting to get some energy back and are managing to make the most off the good weather, our good weather didn't last long back to fog and horrible wet yucky drizzle today, am just back from my consultants appointment, alt down to 124 the lowest it's been since being diagnosed but like you I was really hoping for more, I've to continue on with the same meds for another month and also the weekly blood checks which am happy about, if not much improvement in a month when I see her she is talking about increasing the mycophenolate to 1500 ( I think that's right) 2 in the morning and one at night and see how that goes, am happy with this plan as I know I can function ok on this doze so it gives me a month back at work without any changes to get used too, I asked her about the bruising but she didn't think it was any thing to worry about just to swap arms from week to week for the blood tests, she was fine about me going back to work but also warned me about how tired I will be as we don't realise how much it will take out off us, came away feeling ok about everything, so work here we come :-) take care and I really hope you continue to feel better and have a lovely weekend xxx

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    1. Auto immiune hepatitis6 March 2014 at 14:01

      Oo I'm glad they aren't going to change your drugs before you go back to work..as you say, at least you know how you are on them. So pleased your levels are coming down, we just all need to be more patient I guess. My arms are taking a hammering too, I counted approx 26 bloods taken since last September!! Very best of Luck for work, will be thinking of you x

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  3. Anonymous6 March 2014 at 10:24

    Hi Penny. Hope your recovering well? Its brilliant news that your biopsy is no worse after the battering its taken.
    The numbers will come down just takes longer for them to come down then it does for them to go up...
    Im so pleased that things are finally starting to settle with you and continue to do so.
    How long do you think you will be on the 60mg for? Did you ask about driving?
    Sorry about all the questions its probably the last thing you could do with! Steroid induced brain fog haxx
    Emma
    make sure you still get plenty of rest!!

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    1. Auto immiune hepatitis6 March 2014 at 14:05

      Don't know how long I'll be on 60mg, but still not "buzzing" unfortunately. Tummy and liver area still sore, think its all just protesting, and can't really blame it! Driving is sort of up to me, I did drive a short distance today, but to be honest, don't really think I should unless I have to. I know all about steroid induced brain fog!!!!

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  4. Anonymous6 March 2014 at 11:26

    Ps Its amazing you got to meet someone face to face with aih.Is her condition managed well?x

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    1. Auto immiune hepatitis6 March 2014 at 14:08

      It was amazing to meet her. She was diagnosed at 22, now 33 I think, so a bit like your story. She's been managing really well, but things just gone a bit wrong in recent months and was having a stent to portal vein (I think). Very bright and positive girl though and lovely to be able to share stuff.

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  5. Anonymous10 March 2014 at 07:52

    Good luck today Penny. Hope things carry on in the right direction Xx Emma

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  6. Anonymous10 March 2014 at 07:57

    Everything crossed for you penny,make care xxx

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  7. Anonymous10 March 2014 at 12:12

    Hope everything went ok? Xx

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