(just finished writing this and it's long and boring! IF you can't read it all, what I want to ask is, has anyone else been in this - "waiting period" while they are waiting for Azathioprine to start working? They say it will take up to 3 months before they can confirm the Aza is working for me.
I feel I am doing all I can, because they will not talk about next steps (i.e. surgery) until Aza is completely trialed. But
I still feel dreadful more often than not, I have been signed off work by the doctor for these past 3wks - trying to get back into it this week, and it's really tricky. It's very hard when people ask "Are you feeling better?" and all you can say is "Not really but I have to start doing something!"
I know it's very individual - but was just wondering what others have done whilst waiting.
I've been on Aza for roughly 6 weeks now. (I started off with 1/2 the dose - have been on the full 200mg dosage for roughly 4 weeks now) Had some weird side-effects - severe abdominal pain at night - but ended up associating this with an increase of the dosage. When I started taking it, I got the pain, when I went up from 100-150, got the pain again, same for 150-200.
Since then I haven't really had any side effects. I'm on a course of Pred which started off at 30mgs for 2wks, then tapering off by 5mg per week. At the moment I'm on 15 and I really don't feel it's helping - my nurse practically begged me to get another prescription & lengthen the taper a bit, because it 'might help' a bit.
Thing is I don't feel the steroids are helping like they did the first time. They were prescribed to try and kick the symptoms into check whilst the Aza starts to work - my first course of steroids started in MArch and they helped for about 2wks (I felt better when I was on my second week of 30mg, then went downhill again after tapering below 20mg)
From day to day it's still very variable. One of the things I really struggle with is feeling completely exhausted despite sleeping okay - feeling about twice as heavy as normal and having hard time doing anything. Also get dizziness, nausea and just feeling unwell in general.
going to the toilet is a bit 'sloppy' (not very nice word to use I know!) but it's not completely diarrhoea-like (tho had a couple of days like this too) The weird thing is that it still hurts like diarrhoea would. Also I still get abdominal pain throughout.
I'm normally quite bad with eating junky stuff, but in the past month I've switched to a good diet, plenty of fruit & veg etc. I'm not getting huge flares when I eat one specific thing and I do seem to feel somewhat better when I eat well.
I've had my first two blood tests for monitoring the Azathioprine - in the first blood test, they said that it was fine from an Aza perspective, but that my inflammatory markers were still raised. However, she then said they would expect to see that as the Aza isn't workng.
I only thought afterward - I'd been on the steroids for 2wks by then. Shouldn't the steroids have brought the inflammation down by then?
I really apologise for this post because it's so long and rambling!
I feel I am doing all I can, because they will not talk about next steps (i.e. surgery) until Aza is completely trialed. But
I still feel dreadful more often than not, I have been signed off work by the doctor for these past 3wks - trying to get back into it this week, and it's really tricky. It's very hard when people ask "Are you feeling better?" and all you can say is "Not really but I have to start doing something!"
I know it's very individual - but was just wondering what others have done whilst waiting.
I've been on Aza for roughly 6 weeks now. (I started off with 1/2 the dose - have been on the full 200mg dosage for roughly 4 weeks now) Had some weird side-effects - severe abdominal pain at night - but ended up associating this with an increase of the dosage. When I started taking it, I got the pain, when I went up from 100-150, got the pain again, same for 150-200.
Since then I haven't really had any side effects. I'm on a course of Pred which started off at 30mgs for 2wks, then tapering off by 5mg per week. At the moment I'm on 15 and I really don't feel it's helping - my nurse practically begged me to get another prescription & lengthen the taper a bit, because it 'might help' a bit.
Thing is I don't feel the steroids are helping like they did the first time. They were prescribed to try and kick the symptoms into check whilst the Aza starts to work - my first course of steroids started in MArch and they helped for about 2wks (I felt better when I was on my second week of 30mg, then went downhill again after tapering below 20mg)
From day to day it's still very variable. One of the things I really struggle with is feeling completely exhausted despite sleeping okay - feeling about twice as heavy as normal and having hard time doing anything. Also get dizziness, nausea and just feeling unwell in general.
going to the toilet is a bit 'sloppy' (not very nice word to use I know!) but it's not completely diarrhoea-like (tho had a couple of days like this too) The weird thing is that it still hurts like diarrhoea would. Also I still get abdominal pain throughout.
I'm normally quite bad with eating junky stuff, but in the past month I've switched to a good diet, plenty of fruit & veg etc. I'm not getting huge flares when I eat one specific thing and I do seem to feel somewhat better when I eat well.
I've had my first two blood tests for monitoring the Azathioprine - in the first blood test, they said that it was fine from an Aza perspective, but that my inflammatory markers were still raised. However, she then said they would expect to see that as the Aza isn't workng.
I only thought afterward - I'd been on the steroids for 2wks by then. Shouldn't the steroids have brought the inflammation down by then?
I really apologise for this post because it's so long and rambling!
