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?
Hi Penny, Glad you are feeling slightly better but annoying your levels haven't gone down as much as you would like. It is a lowish dose of steroids now so that is probably why. Hope the higher dose of Aza doesn't make you feel too sick. When you say phosphate levels do you mean potassium? I had low potassium levels in hospital due to the steroids (300mg a day) and I had to take some awful fizzy tablets in a little water, horrid, but only until I came out thank goodness. As you say it will be great if it helps with your tiredness but it is definitely a common sympton of AIH but honestly, your stamina will increase as you get better as your levels and drugs are stabilised! My consultant says that most of his women patients with all sorts of illnesses gastro related complain of tiredness and he maintains that all women get tired and suggess that now I am probably no more tired than I would have been before the illness and being older, more anxious and busy probably explains the tiredness. At the stage you are, I was having daily rests/naps and whole days in bed when I overdid it. You will feel normal again!! Have you had any news from Emma? I hope she is ok. You take care too and enjoy the weather and being outside when you can. Love Jo x
ReplyDeleteHi Jo
ReplyDeleteyes potassium, phosphate sandoz is the supplement given. Felt very rough last night and didn't sleep well due to nausea (so much for me thinking I could sleep through it!) Had to go back to bed this morning till lunchtime, but have felt really ok sibce getting up. No news from Emma, I'm thinking of her too x