appreciate some advice
Hi, I'm in mid-40's and have had colitis, most likely Crohn's, since Jan 2008. Initial V brief response to mesalazine (< 10 days), but then had reasonably severe flare and had to start steroids and have been on them ever since. Managed to taper over several months from 60mg Pred to 15-20mg but kept flaring on reduction.
Just before my gastroenterologist went on long-term sick leave summer 2008 he was able to ascertain I had TMPT-deficiency (TPMT is the enzyme involved in metabolising azathioprine) but with him out of the picture I was kind of left to deal with it myself (see later) juggling steroids for 6 months or so. Got a bit fed up with this (and realised this couldn't go on) and managed to source another GI specialist ultimately who has certainly been more available.
Aza not normally felt possible if you lack TPMT but we've now over the last 6-8 months been trying tiny doses and whilst have managed to get down to 2.5mg pred before disease then began flaring, so usual story of escalating and cautious, painfully slow taper. Now back on 10mg. No significant aza toxicity other than intermittent vertigo (very unpleasant / debilitating) and fatigue. Arthralgia really took hold when I was teetering on lowest dose of steroids, but largely goes when steroids go back up. When disease flares also get eye pain, uveitis I guess. Suspect I'm heading towards IM methotrexate (not keen, but want to get off steroids).
Was fairly fit pre-diagnosis, (resting HR was < 50 when I attended for my colonoscopy), keen cyclist, but have now lost a load of muscle and regained some fat and feel exhausted most of the time now (although like now often times when I can manage only a few hours sleep) and it's certainly affecting home life with wife & kids and work. All very frustrating, just really want my old life back but I guess that's what we all want. . .
Be keen to hear if anyone else has tried azathioprine in context of TMPT deficiency and also any tips about diet - I know what I seem to need to avoid when things light up (anything pleasurable, dairy, ice-cream, chocolate, salty foods). Also anyone any thoughts about alcohol and aza side-effects, profound vertigo and fatigue one week after just a few drinks (definitely only a few) at a party couple of weeks ago, still getting over it, but appreciate my circumstances unusual. . .
I know my symptoms are in comparison to many quite mild, I know it could be much much worse, but frustrated can't get this under control. The fact that I'm a hospital doctor should give me some greater insight / influence but doesn't seem to be helping much so far. Appreciate any comments, think your forum's really good.
Hi, I'm in mid-40's and have had colitis, most likely Crohn's, since Jan 2008. Initial V brief response to mesalazine (< 10 days), but then had reasonably severe flare and had to start steroids and have been on them ever since. Managed to taper over several months from 60mg Pred to 15-20mg but kept flaring on reduction.
Just before my gastroenterologist went on long-term sick leave summer 2008 he was able to ascertain I had TMPT-deficiency (TPMT is the enzyme involved in metabolising azathioprine) but with him out of the picture I was kind of left to deal with it myself (see later) juggling steroids for 6 months or so. Got a bit fed up with this (and realised this couldn't go on) and managed to source another GI specialist ultimately who has certainly been more available.
Aza not normally felt possible if you lack TPMT but we've now over the last 6-8 months been trying tiny doses and whilst have managed to get down to 2.5mg pred before disease then began flaring, so usual story of escalating and cautious, painfully slow taper. Now back on 10mg. No significant aza toxicity other than intermittent vertigo (very unpleasant / debilitating) and fatigue. Arthralgia really took hold when I was teetering on lowest dose of steroids, but largely goes when steroids go back up. When disease flares also get eye pain, uveitis I guess. Suspect I'm heading towards IM methotrexate (not keen, but want to get off steroids).
Was fairly fit pre-diagnosis, (resting HR was < 50 when I attended for my colonoscopy), keen cyclist, but have now lost a load of muscle and regained some fat and feel exhausted most of the time now (although like now often times when I can manage only a few hours sleep) and it's certainly affecting home life with wife & kids and work. All very frustrating, just really want my old life back but I guess that's what we all want. . .
Be keen to hear if anyone else has tried azathioprine in context of TMPT deficiency and also any tips about diet - I know what I seem to need to avoid when things light up (anything pleasurable, dairy, ice-cream, chocolate, salty foods). Also anyone any thoughts about alcohol and aza side-effects, profound vertigo and fatigue one week after just a few drinks (definitely only a few) at a party couple of weeks ago, still getting over it, but appreciate my circumstances unusual. . .
I know my symptoms are in comparison to many quite mild, I know it could be much much worse, but frustrated can't get this under control. The fact that I'm a hospital doctor should give me some greater insight / influence but doesn't seem to be helping much so far. Appreciate any comments, think your forum's really good.
oo: Hi i'm new to this forum, but so far it looks like a cool place to come and see there are others getting by each day with their illness.
