I am a mother of a 15 year old boy who was diagnosed last fall prednisone and asacol worked for a almost a year. Went off prednisone was ok for awhile. In a flare now put on prednisone again and doubled the asacol worked the first week only. Doctor wants to add Imuran and I am scared to death of it after reading the warnings of young men getting cancer. Does anyone know the actual numbers out there of this happening? The thing that really bothers me is the Dr. didn't tell me about the cancer risk I didn't find out until getting the script filled and read the black box warning! Told Dr. I wanted to wait and see if prednisone and doubled asacol would work first, it's not. I think my son now has no choice at this point but to use Imuran or Remicade, what are other folks finding about these dangerous drugs?
Reply posted for campers4.
I am also 15 years old and I have crohn's disease. After multiple faliures with the typical drugs and because of the scary side affects my mother found the SCD diet. This diet has no side affects and should cause complete remission. So far I have noticed improvements, but it does take time, patients, and dedication since it is a hard diet to follow, especially for teenagers like me. I have my days where I wish I could just cheat and eat some candy or regular bread, but in the end I know it will be worth it to stop this disease. I hope this post helps!
Reply posted for campers4.
I'm 18 years old with Crohn's, and one of the things I love about my GI doc is that he goes over the medication risks with me, statistics and all, and then compares those stats to the general population's risk of getting those cancers and to other dangerous things. For example, my chances of getting in a car accident is 1 in 600 but I still drive all over the place. It really is a cost-benefit analysis. Ask ask ask your doctor every question you can think of, and if s/he doesn't have the answers or gets frustrated, find a new one. The GI center at Seattle Children's Hospital is amazing; if you aren't in Washington try calling them for referrals for other good pediatric GI docs. Good luck!
Reply posted for campers4.
I understand your fear loud and clear. The black box warnings are scary! Personally speaking, I would leave no stone unturned before taking that step. I am ultra conservative, especially when it comes to my girls.
After reading the administrative reply, I am even more unsettled ......"most of these studies are in adults and not in kids and teens". So, what if you have a teen or younger child? The unknown scares the h.... out of me.
My daughter was diagnosed with CD @4, and after all these years w/making lifestyle/dietary changes and taking a 5-ASA, her doc wants to add immunosuppression. So far we haven't taken that step, and I am learning all I can about LDN instead. Whether her doc is going along with it, is yet to be seen.
My best advice is not to rush into making the decision and see what alternatives are there. Good luck.
Lizzies Mom
Reply posted for campers4.
A message from the Crohns & Colitis Foundation of America:
All medications haverisk and benefits. It’s important to getall the information that you can to make a decision. CCFA’s webcast, Balancingthe Risks & Benefits of Treatment in Inflammatory Bowel Diseases, provides an overview of the risks and benefits of Anti TNFs (i.e. infliximab,adalimumab, certolizumab) as well as information on azathioprine. According toinformation in the webcast, once in remission about 70% of patients onazathioprine or 6mp stay in remission and the risk of lymphoma is 4 in 10,000. With Anti TNFs, within a few weeks ofstarting, 60% of patients had an improvement in their symptoms. The lymphoma risk is 6 in 10,000. Most of these studies are in adults and notin kids and teens. It is important toread as much info as you can. For more information on this webcast, visit http://www.ccfa.org/info/
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