- Joined
- Jun 2, 2014
- Messages
- 9
In the last month or so I've had a cancer scare, of a particular type of cancer associated with infliximab (still not clear of that one) and also my niece recently moved in to my house and brought pinworms into the house, which are highly contagious and difficult to irradiate and I'm worried what will happen if I get them because of being immune-compromised on infiximab.
After 5 years on infliximab I have only just realised that it's actually quite a daunting drug, and that constantly worrying about infections (I often get UTI's, chest infections, tonsillitis) is not normal! I'm always so paranoid about getting something, to the point where if someone is sick near me I move, constantly anti-bac'ing my hands, cleaning everything (including phones, books, outside of food containers) and then if I do let my guard down that seems to be when I get sick! I have struggled with OCD for nearly 10 years and the constant health anxiety is exhausting and I feel it is made worse by infliximab because I'm always very conscious of the fact that a) this med has potentially very serious side effects and b) my immune system is not good because of the infliximab.
I have a review with my GI on Tuesday and I'm seriously considering trying another treatment but no idea what? My crohns seems to be steriod-resistant and can't tolerate asacol. If my infliximab infusion is late I go downhill rapidly, so my body is obviously relying on it. Thinking of trying some diet based/homeopathic type things but with the back up of infliximab if it doesn't work - seems like a good thing to at least try something else, right?
Has anyone come off of infliximab sucessfully? Or shares similar concerns?
:ghug:
After 5 years on infliximab I have only just realised that it's actually quite a daunting drug, and that constantly worrying about infections (I often get UTI's, chest infections, tonsillitis) is not normal! I'm always so paranoid about getting something, to the point where if someone is sick near me I move, constantly anti-bac'ing my hands, cleaning everything (including phones, books, outside of food containers) and then if I do let my guard down that seems to be when I get sick! I have struggled with OCD for nearly 10 years and the constant health anxiety is exhausting and I feel it is made worse by infliximab because I'm always very conscious of the fact that a) this med has potentially very serious side effects and b) my immune system is not good because of the infliximab.
I have a review with my GI on Tuesday and I'm seriously considering trying another treatment but no idea what? My crohns seems to be steriod-resistant and can't tolerate asacol. If my infliximab infusion is late I go downhill rapidly, so my body is obviously relying on it. Thinking of trying some diet based/homeopathic type things but with the back up of infliximab if it doesn't work - seems like a good thing to at least try something else, right?
Has anyone come off of infliximab sucessfully? Or shares similar concerns?
:ghug:
