Monday, 13 January 2014
Still finding mornings really difficult. Not sleeping well and then groggy and tired till at least mid afternoon. Have started getting cramps in feet/toes again, and discomfort in liver area. Not back to clinic until 20th, so will know how the mycophenolate is performing then. No longer nauseous and hair loss not so evident, but could really do with some energy!!!
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Hi penny hope things are improving for you on the new tablets and things are going good for you being back t work, had my consultants appointment yesterday and alt is on the rise again so she is taking me back in for the intravenous steroids not lookingg forward to it at all said I will be in about a week, I feel really frustrated now as the last five months seems to have been a waste off time, sick pay runs out in six weeks and that's also a reall worry just hoping they can get this stablished and I can get back to work soon. ( sorry for the doom and gloom) take care xx
ReplyDeleteOh I'm so sorry to hear that! You must be feeling so fed up. I'm moaning constantly, but I realise I'm lucky really. I'm having to drag myself to work, and am coming back absolutely wrecked. Everything hurts and I don't know whats side effects or whats the condition. I'm not getting much nausea now, but they called me back for another blood test this week.........won't know why till I go to clinic on Monday. Needless to say, I'm panicking now. They say it can take 18mths-3yrs to reach remission, so I guess it's still early days for both of us. It's just so frustrating though isn't it? I feel like giving up and just staying in bed most days, but keep struggling on. I really hope hospital isn't too traumatic for you and that they get things under control soon xxxx
ReplyDeleteHi penny thanks for your kind words and your right it is so difficult knowing what is side effects and what is the aih, I do get really frustrated as well but I had an appointment with my lovely gp this morning who is always so happy to sit and chat and explain things to me and I come out feeling really positive, am not worrying to much about the stay in hospital but I am anxious about the high dozes off medication, my weight is stable now and I am eating and sleeping really well so this will all probably go to pot again( really don't want to go back to the moon face) she is talking about adding in the azathioprine now as well and you know only too well what that brings with it, I've to wait on a phone call about getting admitted some time in the next two weeks, I really hope you feel better soon, have a good weekend and good luck for Monday, keep us posted, take care xx
DeleteI'm glad you have a good gp, mine's lovely too and it really makes a difference. As for the moon face....I didn't get that (yet!) instead I got nasal hair and blotches/spots and downy hair on my cheeks!!!! Oh it's so attractive this condition isn't it?! You might be ok with the azathioprine, lots of people are, I thought I was, but then it all changed after about 6wks on it. I may yet end up back on it! Thinking of you, try to stay strong x
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