Community Forum

do you keep taking medication?  My son, age 8, has been diagnosed with crohn's recently and is taking pentasa and 6mp.  He has only been on the 6mp for 2 weeks but has already gained wait and his symptoms are subsiding.  He has less pain, more energy and is having hard stools.  My guess (we are seeing the dr soon) is that the medication is working and he will hopefully be in remission soon.  My question is do you stay on medication even after you go into remission?  Since he is taking the 6mp, and is immunocompromised because of it. I'd rather him not take it if he doesn't need to.  Especially with "Swine" flu and just seasonal flu and other things that go around at school I worry about him. Do you or your children still take 6mp even after you feel better?  For how long?

 Reply posted for Aaroneet.

I'd second that.  While I hate giving my 6 yr old medication, I learned a good lesson from a coworker today.  She has Crohn's.  She has been doing really well for 2 years and is now having a flare up.  In frustration, she changed doctors.  The new doc reminded her that this is a chronic disease and not something you stop treating when you feel good.  He also told her he'd bet his diploma her flare was because of stopping her meds (not something else she had thought it might be attirbuted to).  While I HATE it for her that she has felt bad, it was a good lesson for me as a parent about treating something I can't always see....

Take care.

 Reply posted for Safire9.

I am a patient, not a parent, but I can answer your question. I first got sick with UC when I was seven. I recovered once I was placed on 50 mg Purinethol about a year later. I'm eighteen now, and I've been on that medication ever since. Just because your child is in remission doesn't mean he won't flare up in the future. I just had to increase my dose to 75 a few weeks ago. Especially when your child enters puberty and starts to undergo a growth spurt, there's a good chance that his current doses will be too small because he is a bigger person. So whatever you do, keep him on the medication.

 Reply posted for mominmichigan.

Hi there,

Yes I was at the same conference as your husband in Plymouth.  I am very happy I went, it was helpful.  One of the first speakers there talked about vaccinations and he highly recommended it in patients with Crohns/Ulcerative Colitis.  Our son's GI doctor and his peds doctor also recommend it.  Just make sure it is the shot.  Our son got it.  Also they recommended the Pneumococcal (spelling?) vaccine for people who are taking immunosuppresants.  My son took that too.  It is also a "dead" virus.  I think CCFA-Michigan chapter does a talk like that every year so I will try to make it annually.  Some of the doctors stuck around after wards so you can ask more personal questions and that also helped.  Take care. 

 Reply posted for Concerned Mom.

Thanks for your reply, concerned mom.  What your doctor told you seems to agree with what I've found on the web about the flu vaccines too.  It's possible, very possible, that I misunderstood what he said so I'll ask for clarification when we go back in a week or so. 

 Reply posted for mominmichigan.

With regard to the flu shot.  My daughter is taking Prednisone and just had the seasonal flu shot.  Her doctor at the Cleveland Clinic strongly recommended it and told me that even patients on Remicade (which is even stronger) should get the flu shot.  I would get a second opinion.  The drugs our kids are taking to control Crohns suppress their immune systems and put them at even higher risk for catching other things.

 Reply posted for loving mother.

lovingmother,

You weren't at the conference at The Inn at St. John's, Plymouth by chance, were you?  My husband went to the one there this weekend and he said it was really informative (though a little overwhelming to for a parent of someone newly diagnosed!)

Also, our doctor told us that Matt could not have any type of flu vaccine, even the shot, when he started the prednisone.  Is that what other people's doctors say?  I didn't ask him since Matt had already had his regular flu shot but just wondered.

 Reply posted for Safire9.

Hello.  My son is 8 and has Crohns.  I recently went to a conference on IBD and that question was asked and the response is the same as the other two posts.  To maintain remission, it is recommended that people continue to take their meds.  My son takes Imuran and I wish more than anything there was a way to stop the meds without a flare up but I know right now there is not.  Hopefully one day there will be a cure for all our children and every adult or child living with this disease.  This is what I pray for and I know you all do to.  Take care.

 Reply posted for Safire9.

It is wonderful that your son is doing well.  I would agree with the other post, once you start taking medications you are on them indefinitely.  My 9 year old daughter has Crohn's and Imuran kept things stable for about a a year, she has recently had a flare and the doctor has added Pentasa and Prednisone to help get things stable again.  I too am concerned about her immune system being comprimised, I would recommend getting the flu shot and the H1N1 vaccine once it is available.  I am sure your doctor will tell you, your son can only get the vaccines, NOT the "live" virus nasal mists.  Good luck!

 Reply posted for Safire9.

My daughter is currently in remission (knock on wood) and so far as I know she will be on meds until the cure comes.   She is not on 6mp though, she is a Sulfasalzine for maintenance.   It is my understanding that once a system is in the remission phase that meds are still necessary to maintain it.  

Lizzies Mom