Statistics on people who were able to maintain remission off of meds.

[kimmidwife]

Hi All,
I am having a little debate with some people on whether really going off of meds once you get into remission is a viable answer for our kids. (I say it is not and they are arguing that there are some people who are successful with it)
And whether you can maintain remission just through diet alone.
I am trying to find statistics or some good articles to share with them showing there is no proof of long term success with this.
Can anyone help?

 

[my little penguin]

People adults or kids ?

There is a big difference between the two cohorts

 

[Lisa]

I can't help you with articles, but I can share my own experience....

Diagnosed at 7, was put on meds (sulfa drugs at the time) until remission was reached then taken off meds..... First remission later maybe two years? Back on meds, until remission, stopped until I relapsed...... Repeat for years until the time between stopping meds and coming out of remission was practically no time at all.......

All the while my disease was getting worse, multiple hospitalizations as a young adult, finally when I was around 30 I developed fistulizing disease..... Went on Remicade in fall 2005 34 years old) when my daughter was about 6 months old. Been on Remicade since, with hopefully no stopping in sight.

 

[crohnsinct]

Agree with MLP. Adults and kids are two different things. But really? Why argue. Just thank them for their concern and move on. I have found with some people, yes even my loving family who insists that I just need to change diet and add a little aloe and my kids will be fine, just won't be convinced no matter what. Put your energy into other things.

BUT if you are looking for studies I know that Dr. Peter Higgins and Dr. David Rubin have tweeted numerous studies about drug holidays and the rate of relapse.

 

[Maya142]

I'm not sure what the numbers are, but you could probably find them on PubMed.

There are lots of children's hospitals doing diet only studies right now. But at our hospital, which has one of the biggest IBD centers, they will only enroll kids with relatively mild IBD - who have normal growth velocity, who have been in remission for at least 12 months without steroids etc. I know for one particular study, FC has to have been <250 in the last 3 months.

So I think it also must depend on severity of the disease. And they are monitored very closely to see if they relapse.

 

[Tesscorm]

I would love info on this as well... it's something I've often wondered, wishing that one day S could go off meds. I have a friend, with UC (supposedly was severe when diagnosed but before S so I knew next to nothing about UC), who was treated with steroids only. She responded well, went into remission and was never put on maintenance meds. She just had a follow-up scope (has scopes every one or two years) and all is still good. As S was diagnosed ~6 years ago, it's been at least 7 years for her. I wish I knew how often this happens - because, of course, those aren't the people on forums...

I haven't asked S's GI because we all know the answer... 'everyone's different'. And, certainly, not going to take him off remicade just to 'try'.

 

[kimmidwife]

MLP,
This is for kids and these are parents of kids with IBD who are claiming that their doctors said their kids will be able to come off of meds once in remission.

 

[xmdmom]

These are studies in adults about clinical course after stopping biologics. Although they are not about kids, I thought some of you might be interested.
http://onlinelibrary.wiley.com/doi/10.1002/ibd.21792/full
http://www.tandfonline.com/doi/abs/10.3109/00365521.2012.660541
http://journals.lww.com/ibdjournal/...After_Discontinuation_of_TNF__blocking.7.aspx
http://www.sciencedirect.com/science/article/pii/S1542356514017200