I have a 5 year old son with UC. His doctors feel he is Steroid dependant and say we need to start him on Imuran. The side effects and risks of this medication really scare me. He is currently on Colazal 3x day and also 7ml of Prednisone a day. If anyone has a child on Imuran I would really love to hear your experience with it. You can reply to my post or email me at jcraig007@comcast.net. Thank you.
Reply posted for loving mother.
My son has been on Imuran for almost 8 months (almost since he was diagnosed with Crohn's in stomach & small bowel in July). It is definitely less risky than one of the current trendy biologic meds. like Remicade. These are the scary ones that we are trying to avoid for now. My son (age 7) is off steroids again (2nd time since diagnosis) & we hope Imuran can keep a remission. He also gets anemic pretty quickly - his hemoglobin was 8 at time of diagnosis. I found a CHEWABLE IRON Supplement, that tastes good and works wonderfully...I found it online, a vitamin store...search on chewable iron....he tolerates it very well. His hemoglobin was in normal range in the first month on this product!
Reply posted for jcraig007.
My son has been on Imuran for over 2 years. He is 4 now. We haven't had any problems with it. It is so scarey reading about it though!!! He has been so healthy. We did find out in his last colonoscopy 2 weeks ago, it isn't doing the job, so the dr. wants to add Entocort after 15 days of Prelone.
Reply posted for loving mother.
Why do you think that Imuran is less risky then Humira? Just curious. It seems that they both suppress the immune system and have a risk of lymphoma.
Reply posted for Sarah2008.
Hi. For the parent who is asking if Imuran is the least risky of the group. I think it is less risky than Humira or Remicaid. It takes time to work, sometimes up to four monthes and required frequent blood work but is considered milder compared to the others. Take care.
Reply posted for Concerned Mom.
My doctor is suggesting that we put my 19 month old son on something stronger than Pentasa because it's not working for him. He said that my husband and I can choose what drug we want to try, Imuran / 6 MP, Remicade, or Humira. I'm torn as to which one. They all seem to have horrible potential side effects. Do you think that Imuran is then risky then the others?
Reply posted for jcraig007.
My daughter is 6 and was dx with Crohns in June 2009. It took us 6 months to wean the steroids. She has been on 6MP (Mercaptopurine - similar to Imuran) since before she left the hospital due to the severity of her disease. She has done very very well. No colds, flu, strep despite the immunosuppressant all winter. Her "healthy" brother has had all of the above.
Reply posted for jcraig007.
I would agree with everything the other Mom said. My 9 year old daughter has had Crohn's for two years. She is also on Imuran, Asacol, Prevacid and some vitamins. Overall she is doing well and does not get more sick than my other two kids. She too has been vaccinated for the flu and H1N1. I completely understand how you feel about the drugs and I too had many concerns -- still do. It is important to consider what the long term effects of steroids will be -- on bone density, stunted growth and the terrible side effects. I am not sure how your child is doing, but my daughter was bloated, gained weight and had insomnia and terrible mood swings. Fortunately Imuran does not have any of these effects for her. I do think doctors are very aggressive when it comes to treating kids with Crohn's with the goal to keep them out of a flare and growing normally. There are some resources on this web site that can help you learn more about the drug options. If this makes you feel any better, there are even stronger things out there (i.e, Remicade, Humira) and your doctor is not suggesting those. Good luck with your decision, I hope it helps to know that your child is not the only one.
Reply posted for jcraig007.
Hello again. Although Imuran suppresses the Immune System my son has not been sick more than usual...in fact he has been the healthiest in our household this cold and flu season. I also had him vaccinated for both the seasonal flu, H1N1, and Pneumococcal. These are all dead vaccines so it is okay with an immunosuppressant. Whenever your child needs a vaccine make sure the vaccines are not live. Both flu vaccines in the injection form are dead...never give him the nasal ones because these are live. My son has been sick once this winter with a cold that he was able to fight off like any other person. I hope that helps. If you do get your son vaccinated next flu season make sure you do it early so that it kicks in before peak flu season. The doctor office will give him priority for his underlying medical condition and if he is on Imuran at the time. Feel free to ask any more questions. Take care.
Reply posted for loving mother.
Thank you for your reply :) It does make me feel a little bit better. We have an appt with his doctor on Tuesday morning and I have a lot of questions for him about Imuran. I am just wondering, do you feel that your son has been sick more since he has been on it (colds and viruses), and has your son received any vaccinations since being on Imuran? I have read that kids will be more likely to pick up infections and viruses while on it due to the fact that it suppresses the immune system, and I also read that kids should not have vaccines while on Imuran. Again, thank you so much for your help.
Reply posted for jcraig007.
Hello. My son is 8 years old and was diagnosed with Crohns is October of 2008. My son has been on Imuran since May 2009. I was also scared about putting my son on Imuran but felt like I had no choice. My son has not had any side effects from it and is now symptom free. His major problem now is that he remains very anemic and has had to be put on IV infusions of Iron. To make sure I did the right thing I took my son for a second opinion recently at a very large University Hospital in my area. The doctor at this hospital agreed with everything my son's doctor did and said that with the way my son's disease is spread out he would have had major flare-ups and problems without something stronger like Imuran. Hearing another doctor say it has made it easier for me. Now, don't get me wrong, I am still struggling with what the long term effects of these medicines are in kids. I don't know that and the doctors do not seem to know. I hope this helps you and I hope if your son does go on it he has no side effects and is able to come off steroids. God bless you, I will keep your son in my prayers. If you have any other questions let me know. Take care.
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