Monday, 24 February 2014
Saw Proff Cramp this afternoon. Things are not good. ALT stubbornly rising and now at 456. He wants to admit me asap this week when a bed is available to repeat the liver biopsy. He thinks this is a flare of the AIH and probably not due to anything else. Viral screens were clear. Over the weekend, I also developed glucose in my urine, so am now looking at probable steroid induced diabetes. He will do a fasting blood sugar when I'm admitted, but today, BM was only 6.9mmol (little high, but not too bad).The good news is, he is confident that this will settle once the AIH is under control and the steroids are reduced. Terrifyingly, he wants to increase the steroids to at least 60mg after the biopsy. I can barely function mentally on 30mg, and my brain turns to mush on 40mg, God knows how this will affect me but there is no choice. He wants to see the level of scarring on my liver, as it was quite marked when I had the biopsy last September. On a VERY positive note, he offered to write to my managers/occ health/HR whoever, to explain prognosis/management etc. He is confident that he will get this sorted in time. So , am feeling all mixed up with positives and negatives, and await the call for admission. He will see me again on Weds 5th March with results.
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Oh I am so sorry it wasn't better news for you. This disease is so unpredictable I think you have to be treat it aggressively at the beginning, I was on 60mg and it was awful but they do reduce you as quickly as they can.
ReplyDeleteI'm glad your in his capable hands now, he is definitely the man to see.
How are you feeling in yourself? Are you just on the steroids at the moment? has he mentioned adding another drug? Its such a shame that the biopsy is the gold standard procedure for monitoring this disease.
Keep us informed and I really do hope things settle down for you.....Be prepared for the munchies when your on 60mg I ate us out of house and home and put on a lot of weight but this does come off quite quickly as they reduce the steroids.
My thoughts are with you
Emma xxxx
Feel knackered all the time. Only on steroids/calcium/alendronic acid and omeprazole. we discussed trying the Aza again in a while, and also tacrolimus (I think!) x Thanks for support hope yours settle quickly xx
DeleteHi penny, no wonder you are all over the place with your emotions, but one thing I've learnt over the last few months is if the consultant says they are confident then we have to believe them cause they don't bullshit us, I really feel for you just now, the 60mg off pred isn't as scary as you think, I've been on it twice now and it works great on the alt, they only keep you on it as short a time as poss, I know nothing I say will make things any easier for you but I just wanted to let you know that I will be thinking off you as always and keeping everything crossed, please take care lots off luck and love being sent your way xxxxxxxx
ReplyDeleteHi Colleen thanks for support. Am more worried about the diabetes to be honest I think!! Just want it all sorted.....I know I know...patience and all that! xx
DeleteHi Penny, I agree that the aggressive approach is necessary. I was on 300mg a day for 5 days when alt very high and it came down drastically very quickly so hopefully it will be the same for you. I really hope the side effects are not too bad for you and that they can start reducing the dosage and introducing another drug soon. I hope the liver biopsy experience is ok for you and that it is helpful to the doctors.I always take a pile of magazines and try and enjoy bing waited on for a day! Have confidence that they will sort you out, it sounds like you are in very good hands. I hope my email was not too much for you, just trying to help!! Keep resting as much as you need to. With love Jox
ReplyDeleteThanks Jo x will be taking lots of reading material! i didn't get an email from you.......if I had, I'm sure it would have helped!!.........wonder who got it?! x
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