Update-remicade

[xrayzerase]

update-remicade

hi-i know i can't let myself think about this too much-but i also don't want to cut myself off from others who know what /who have same disease
i am just scared--you know-went from the idea of it being mild and now is considered severe.
just a jump-i need to absorb it--and also-need to do all i can to not obsess.
i start remicade in 1 1/2-2 weeks. (once insurance approval goes through-he said it usually takes about this long--he already put in order once he got my blood results)
i am not scared of the remicade--i am just scared of it not working. i hope it does.
since on entocort-still not better-feel a little better-but--this flare is worse. and the blood shows that too. (amount of inflam. /lymphocytes etc)
my brother and wife are having a baby in may. he asked me yesterday to ask my dr about stem cell transplants
i know it used in only life-threating stuff now--but there is storage til needed--and it seems a good possiblity it may be nearer in future to be used for things like crohn's.
so--it meant a lot he mentioned this -to talk to my dr-and maybe have them store the cord when their child is born...
it is just all so weird even think on this--especially though-it means a lot that my family is so supportive -in so many ways. even though it is all wierd stuff (stem cell things) (to plan ahead and save cord)--to be honest--it makes sense--and it wont hurt their child or mother in any way-so-worth looking into. i know it is all risky-this stem cell stuff..but- i know if a trial comes up-i'd consider the risks.
in meantime-remicade/pentasa/and taper entocort once on remicade if it works.
if not--who knows. i guess other stuff.
personally-as much as i dread the idea that i need remicade-i also feel hopeful and relief (if it works) if it means feeling better finally.
anyway-thats it
..

 

[MJNixon]

You just got to hope for the best. I've been on Remicade for 3 years after I had a relapse in my Esophogas. So far, I've been problem free. I originally started every month, and now I am up to every 3.5 months. The key is to know yourself, know the the side effects of the drug, and to be positive. If you doubt the drug; it probaby won't work. If you believe in the drug, I think you'll be plesently surprised. Think in the present about feeling healthy; not in the future. If Remicade causes me to get cancer at age 75; so be it. Without Remicade, I would not be able to to law school.

Michael

 

[ubob]

My daughter was also diagnoised with crohns and upgraded to severe crohns, we were considering remicade until we found a doctor who gave us a safe alternative that worked. he placed my daughter on wellbutrin which while normally used as a antidepressent also lowers TNF just like remicade but without the sideeffects of the expense. I have introduced three other crohns patients to wellbutrin with the same results. I recently spoke to another friend who has helped two more people get started on the wellbutrin with the same results. This is 6 for six s far as a sucsess rate. The wellbutrin runs 30-50 $ per month. Good luck with your crohns, pleases feel free to write if youhave any questions.

UBOB