Please calm my fears. Maybe it's just because I'm flaring and I'm on Pred and dealing with a lot emotionally.
Anyway, I keep reading all these negatives about TNF blockers (Remicade, Humira, Cimzia, etc). The long-term effects seem to NOW be getting exposed (and rightfully so since it's a fairly new drug). My first flare hit hard and fast and I went downhill so fast, they could find nothing but Remicade to stop me from fistulalizing. I developed 3 in 2 weeks. Remicade was my "miracle" drug and gave me my life back, but now I've developed antibodies against and have had to move onto something else. I'm going to be starting a trial for ABT-874 which actually is a drug that interferes BEFORE the TNF phase. It has been tried on another condition and is moving into it's later phases, but it's very promising. I was told that since I developed the antibodies to Remicade that I have a very ltitle chance of Humira or Cimzia working and that Tsaybri, though it has worked for some, is not as promising as originally thought to be. So, I opted for the trial.
Anyway, after reading all of these posts, I am so very hesitant about the clinical now. I KNOW I need it. I'm on Pred and holding onto a thread. I'm back to taking pain pills and Xanax to keep me calm and I need something and soon. It's sort of my last hope. In addition, I'll get a ton of thorough testing before I start the study, which to me.. is knowledge about my gut. I'm anxious to see what exactly is going on and where considering how badly I flared this summer and I'm still flaring. The problem is I read all these posts about how this is now proving to be dangerous, and this causes cancer..etc...etc...etc. I JUST started being able to have a family. I now must weight my health issues to taht of my family as well and it's just been bothering me for the past few days. I'm scared to death of the prospect of cancer or something dangerous from one of the trials, but what am I to do?
Yes, I'm considering some drastic diet changes, but I just have yet to find something that I feel I can tolerate and what would work. I eat fairly healthy (well, while NOT on Pred!!). I'm a big fruits and veggie girl when I can have them. I'd say my downfall is preservatives, but yet I maintained a very length remission while on Remicade and eating healthy. I avoid a lot of things already, but I've been looking into a possible gluten-free diet. I know it's not a cure and I'm very very apprehensive about some of the studies or the stories on how diets changed peoples lives, but if it will HELP and give SOME relief, I'm willing to attempt it. But, I realize that it's possible it could give no relief.
I'm just a bit lost and nervous. I know if this clinical fails or I don't respond, we don't have much to deal with. I have yet to try Imuran, so it's still on the list, but there isn't much left for me to try and I'm nervous about that. My disease is primarily rectally and in addition, they have found disease in and around my TI now, well, let me say is suspected as I've begun to have quite a bit of pain in that area nad the GIs all say my entire colon is tender. They've never found anything in my small intestines.
Sorry to ramble. Maybe others can give me insight. I'm also considering a pain management doctor. I think it might help with my anxiety too as even just KNOWING there is 10 or 20 pills in the medicine cabinet gives me a sense of relief that if I ened one, it's there. I do not take many pain pills AT ALL. In fact, I can't tell you how many times I've been offered and I've either asked for a lesser strength or refused it all together. Only ONCE have I asked for a stronger pain med and that was when I got discharged in July and was on Dilaudid all week. Normally, I just take 2 tylenol and "manage" the pain. I hardly ever take anything besides that.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08 - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old