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New Member

Date Joined Mar 2006
Total Posts : 4
   Posted 11/6/2007 8:32 AM (GMT -7)   
I found out that I have crohn's back in 2004. (My mom died from it, my one sister has it all so). The doc put me on steroids at first, they did not work. I gained alot of extra pounds, (I was on steroids for like 9 months, I was having a hard time getting weaned off of them).
Next step was to try the Remicade, whitch I am still on every 6 weeks. I had 14 treatment's so far. Not sure how much more of them I will be getting, they where working in the beging. Now it is takeing like 5 day's for it to kick in, and the inc co. is having a fit about the cost. I know that the treatments are not cheap, but I have to have them.
Now look at me? I still can't eat, go to potty like 10 time's a day. (Unless I don't eat). Then I can get away with only on the crapper maybe like 4 to 6 times. My vains are a suck, well I guess with being stuck alot does not help. I have to drive like 60 miles down for the treatments, and with MR. snow coming it will be a fun ride down the hill side.
I just don't know what else I can do, my 13 year old weights more then me. If I could only get fatter? (And not from steroids). Not going on them again, all ready told the doc... "NO WILL DO".
I was just woundering if any one else out there had to deal with the Remicade deal? and what else I could try to take....
Proud Marine MOM of Cpl Joshua S.

Post Edited By Moderator (Ides) : 11/6/2007 9:47:24 AM (GMT-7)

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 11/6/2007 8:41 AM (GMT -7)   
Well there are other options to Remicade. Did the doctor try an immunosuppressant before the Remicade like 6MP or Imuran? There's also Humira.

What does your doctor say about the fact that you're still having symptoms? Has he raised the dose? And when it comes to other drugs like steroids, we all know they're unpleasant but sometimes you have to bite the bullet. Steroids may get you over the hump so the Remicade can kick in.

Why do you say the Insurance company is having a fit about the costs? They have a formulary, with a set amount that they pay, they can't change their mind mid stream. If you decide to change to Humira, check with your insurance company first, it turned out that while my insurance paid Remicade 100% it would have cost me hundreds of dollars each month for the Humira because it's a self injection medication versus an infused medication.
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 

Veteran Member

Date Joined Mar 2006
Total Posts : 501
   Posted 11/6/2007 9:29 AM (GMT -7)   
I could not deal with the Remicade and have been taken off of it, though it is still here wreaking havoc on my body. My doctor suggested humira, but I wanted to take a break before starting a similar drug to Remicade.
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 11/6/2007 9:31 AM (GMT -7)   
Hi I am on Remicade and Imuran and these 2 drugs work wounders for me. AS Judy recommends there
is always Humira.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 11/6/2007 9:49 AM (GMT -7)   
Jenny, welcome to Healing Well!
I know how proud you are of your son. Please thank him for me for his service to our country. I removed his last name to protect your identity and his. Public forums such as this are not only used by people seeking help, but cruised by types seeking to profit from others. Also I don't wish your son's identity as a service member to be compromised.
PS My husband served 20 years in the Army prior to his retirement.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

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