- Joined
- Aug 17, 2017
- Messages
- 2
I've been on azathioprine since around 2014 not long after I had a bad flare up, before that I was on pentasa. I did ok on it but in the last couple of years my wbc count kept going down frequently. At one point, last year, I had to come off it for two weeks as it was so low. Obviously the higher the dose the further it drops but even on 50mg (which I've been on a while) it can still drop. at christmas it was around 2.
What has been frustrating me recently is the contrast between my specialist and the IBD nurses. They seem to be concerned about my current problem but my specialist is not. They have said, 'this is really tricky, a rare thing for you to react this way and we're worried you're going to run out of options'. My specialist, when I brought this to his attention, said, no there are quite a few other medications we can try. They did say they might put me on a different med that doesn't affect the WBC count as much but when I spoke to him in December he said my WBC doesn't remain low, it usually bounces back up and that if it keeps getting lower that's a problem. My last calprotectin test was fine, I had my first colonoscopy and MRI scan last year and they didn't show significant inflammation so he said just stick to the 50 mg of aza and see me in 6 months time because I don't have as many problems on 50.
I'm still concerned about the fact it keeps dropping, it cant be good to keep going on this way and the fact the IBD nurses come across as if they are against my specialist just causes me stress. I'm expecting someone here to say 'change your doctor!' but I already have changed once. I went from this one guy to this current one who is more the head guy of that department in the hospital and someone who specialises more in inflammatory bowel disease.
I saw my crohns dietitian for the 3rd time yesterday, she's quite helpful and said it wasn't really good how it's being dealt with. Maybe she can put in a word but I thought I'd also ask here.
What has been frustrating me recently is the contrast between my specialist and the IBD nurses. They seem to be concerned about my current problem but my specialist is not. They have said, 'this is really tricky, a rare thing for you to react this way and we're worried you're going to run out of options'. My specialist, when I brought this to his attention, said, no there are quite a few other medications we can try. They did say they might put me on a different med that doesn't affect the WBC count as much but when I spoke to him in December he said my WBC doesn't remain low, it usually bounces back up and that if it keeps getting lower that's a problem. My last calprotectin test was fine, I had my first colonoscopy and MRI scan last year and they didn't show significant inflammation so he said just stick to the 50 mg of aza and see me in 6 months time because I don't have as many problems on 50.
I'm still concerned about the fact it keeps dropping, it cant be good to keep going on this way and the fact the IBD nurses come across as if they are against my specialist just causes me stress. I'm expecting someone here to say 'change your doctor!' but I already have changed once. I went from this one guy to this current one who is more the head guy of that department in the hospital and someone who specialises more in inflammatory bowel disease.
I saw my crohns dietitian for the 3rd time yesterday, she's quite helpful and said it wasn't really good how it's being dealt with. Maybe she can put in a word but I thought I'd also ask here.
