• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Going off meds

My son has been on meds since diagnosis of Crohn's 18 months ago (Allipurinol and 6mp), he is in remission atm, we have just had bloods done for our visit to our Gastro Dr next week.

If his bloods come back good and he is still healthy, is it a risk if he stopped medication? I'm not sure what is the best to do, I'd love him not to have to take these drugs, I'm scared of what they are doing to him, at the same time grateful that they are helping him.

Thanks in Advance x
I'll tell you our experience with stopping meds....

My daughter was diagnosed with Crohn's last April. We were told her disease was mild and the diagnosis was not 100% certain. She was on Pentasa, Prednisone, and 6mp. We eventually d/c the Prednisone and 6mp but she remained on the Pentasa. She felt great, labs were pretty good, scopes and pill cam were clean. Our second opinion (to confirm or deny diagnosis) felt that the medication was not necessary and we stopped the Pentasa. Two months later my daughter's labs are wonky, she has inflammation in her TI, and ulcers in her stomach and small intestine.

I think stopping meds is a huge decision not to be taken lightly. The consequences can be brutal. Talk things over with the GI and hopefully you can come up with a plan that everyone is happy with. Best of luck!!
My son was also diagnosed about 18 months ago too and currently on 6mp, and although bloods are fine his consultant doesn't want him to stop taking it until he is through puberty. He is 12.5 at the moment. I would love him to stop now as the tiredness he suffers is so difficult for everyone to manage but I can totally understand the dr's thinking and want to be able to give him the best possible chance of developing as his peers as much as possible. It is not nice but we have come to terms with it.

Hope you have a good appointment.

Ands xxx
My son has never stopped all of his medication. He is on combo therapy, Remicade and mtx. He stopped the MTX last summer, his labs were good so the GI discontinued the MTX. Two months later his symptoms were returning and things were going downhill.

I agree it is not a decision to take lightly. C sorta made the decision for himself since he was at his Dads for the summer, he just stopped taking it. He hasn't had a compliancy issue since that incident.

The GI May be able to give you guidance with this and it all may depend on the severity, location etc at dx. Hope it all works out.

my little penguin

Staff member
DS was dx almost 2.5 years ago.
We only stopped meds once.
We stopped 6-mp for a week to lower his levels before we added allopurinol since his ast/alt was very high.
He went from being slightly tired to not wanting to move , extremely nauseous, vomiting , abdominal pain etc....
Crohn's is not a disease that goes away or is something you out grow.
The immunosuppresants stop the repeated inflammation cycle which causes damage.
The subsequent flares are much harder to control and get back into remission than the first one.
The risk of surgery also increase drastically when Imuran or 6-mp is stopped even after years of using it.

There is a paper on it in the research section ( I think )

Anyways the damage done by going off the meds is far greater than the potential risk of taking the meds .

Please talk to your Gi about all the risks
Since it is hard to undo once a flare starts

my little penguin

Staff member

ETA: to fix LINK ;)

This is from 2012
Please read - again relapse rates are very high

Crohn’s Disease
Lemann et al’s5 study compared baseline variables in CD patients in long-term remission on AZA/6MP for >3.5 years. The factors associated with a higher likelihood of relapse after stopping 6MP/AZA were elevated C-reactive protein (CRP; >20 mg/L), low hemoglobin (<12 g/dL), short duration of steroid-free remission (<50 months), and elevated white blood cell counts.
Other factors, including male gender, younger age, and shorter duration of remission <4 years have been asso- ciated with a higher risk of relapse when AZA/6MP is stopped. However, after 4 years of remission on AZA/ 6MP, the risk of relapse appeared to be similar, whether the therapy was maintained or stopped.3
Reviewing the data on CD patients on combination treatment including INF, the predictive factors of INF fail- ure after stopping AZA were shorter INF-AZA exposure ( 2.28 years), elevated CRP (>5 mg/L), and high platelet count (>298,000).15
For CD patients on monotherapy with INF, the fac- tors associated with a high likelihood of relapse after stop- ping INF are the presence of endoscopically active disease, short time in remission, high markers of inflammation (CRP levels or high platelet counts), adequate trough levels of INF, and postoperative patients.
Last edited:

my little penguin

Staff member
Recently, the term very deep remission (defined as clinical remission [CDAI < 150] and endoscopic remission) has been applied to patients on immunomodulators/biologics who have no clinical symptoms or objective signs of inflammatory disease. Whether or not patients who achieve and maintain a very deep remission may successfully stop treatment is not known. This article will review the current data on stopping treatment in IBD and identify certain factors that are associated with a high relapse rate after discontinuing treatment
Stopping immunomodulators and biologics in inflammatory bowel disease patients in remission.

AuthorsClarke K, et al. Show allJournal
Inflamm Bowel Dis. 2012 Jan;18(1):174-9. doi: 10.1002/ibd.21792. Epub 2011 Jun 14.



Super Moderator
It is a risk going off meds farmerswifey.

mlp has given wonderful links. :)

From our own personal experience? Well we have never discharged meds and I don’t know that this is the right analogy as it comes from our experience with a child that was undiagnosed and one that was newly diagnosed and both of which had disease in which complications reared their ugly heads. Suffice it to say that untreated or under treated disease in our case was ugly and a place I never wish to revisit.

I would so love it if my kids never had to take another medication or supplement in their lives! I mean how sucky is it that in their short lives they taken more meds than I reckon I will ever take in my entire life. As it stands now I don’t take any medications and yet here I am looking at what wouldn’t be out of place in elderly couples home each of whom suffer with a number of age related disease. {sigh}

The only way I can ever get my head around this situation and not end up in the looney bin is to try and take the emotion out and see it for what it is, a chronic disease that has no cure. A disease that when in remission is lurking and ready to strike at the first opportunity that presents itself. I have to compare to other diseases so that some perspective is brought into it. What if this was Asthma I was dealing with, would I stop their medication in the hope that they never have a severe attack or do I give the maintenance medication and reduce the chances of that happening significantly? I would give it. What about Type 1 Diabetes? Do I not give the insulin and see what happens? No. Some might say that is different as those diseases don’t have the same flux and flow that IBD does but is it different? I don’t think so as either way neither disease is curable and maintenance medication is used to maintain a steady and manageable outcome.

The other thing you need to consider is your options if you do cease medication now and then need to restart. If you have been off them for some time then the same rules apply as if you starting all over again. By that I mean if he were to suffer a relapse, say 3 months down the track, then depending on the severity of that flare, bearing in mind that children do tend have a more severe presentation that often is correspondingly difficult to treat, then bringing it back under control quickly may rule out 6MP/Imuran due to the long lead in time to efficacy.

As has been mentioned, your son is also on the cusp of the most important period of his life developmentally, puberty. So all else aside that too is a very important consideration.

Good luck with the appointment and let us know how you get on. :ghug:

Oh…and so good to hear all is going well! :dusty:

Dusty. xxx


Sarah's GI mentioned the need for 2 completely clear colonscopies before even considering going off meds. This talk was in the context of having children to the distant future.

Has a colonscopy been done to confirm remission?
Add one more voice to the chorus.

remission does not equal cure.

There is no data that I am aware of to show that there is long term damage from taking these meds except for a minute, tiny, barely there increase in the risk for some types of cancer.

He is more likely to get killed in an accident.

There are adults who have been on these meds for 25, 30 years with no problems. And, while there isn't much data on them, we now have kids who started on these meds and are now adults without any reports of problems. And I'm pretty sure we would have heard about it by now.

Talk it over with your GI because that med takes up to 4 months to become completely effective again. Once you stop, if he flares, you may be facing a step up to a biologic depending on the severity of the flare.

all the best
After my son had his resection, his GI suggested stopping meds. DS was taking 8 Pentasa pills a day and was super excited to stop. I don't know what I was thinking... but somewhere along the line I agreed to this. The thought was that he was feeling pretty darn good after surgery, so we'd resume a maintenance med in a couple of months.

One month later, DS had his worst flare ever. His sed rate, CRP and fecal cal were the highest they've ever been in the five years he's had the disease. He was miserable.

After another round of pred to get things under control again, he started Azathioprine. We waited and waited for it to kick in. It never did. Five months later, another flare involving an abscess and fistula. We had no choice but to jump to Remicade.

I think coming off the meds, even for that short time, was one of the worst things we could have done for DS. I'm not saying this will happen to you, but like the others have said, remission is just that. It's a break in the action for a cyclical disease with no cure (yet). Statistically speaking, it's pretty likely to come back if you stop the meds and in our experience, it comes back with a vengeance.

I believe he's in remission BECAUSE of the meds. They are keeping the Crohn's under control.
Thank you so much everyone for your thoughts, and I am agreeing with you 100 percent! To see him play football with his team, to have energy and drive is just so wonderful. He still gets joint pain and he's skinny but he's grown taller, there's no blood and he's happy!

I suppose the reason I wanted to ask about this is that I worry about the long term effects of the drugs, what they will do to him in the future from long term use, and I understand what untreated Crohn's could do so it's such a difficult thing. I'm sure our doctor will guide us in what to do, I wonder would he change the dose or leave the same if the blood tests come back ok?

Anyway, thank you again xx
I'm so happy to hear he's doing everything a boy his age should be doing.

Also one more thought, we should ALL not lose hope that in the future there will be a cure.
Until then I'm thankful theirs drugs that will help.
I struggle with this too, the meds scare me. I remember asking the GI early on if we'd be able to take him off his meds once we were certain he was in a deep remission. He said no. (Sigh...)
Everybody is different I don't take the meds. Am I the only one that was prescribed asacol? I don't see anyone on here on asacol. I don't feel any different taking them , other than I feel weird on them. Back aches heart racing. That can't be good . So I don't take them. A little MJ vitamins , excersise and I'm good. Not to say I'm cured I'm not, it's just that to take pills that are poison to make me feel better I don't want to take that chance .


Super Moderator
Hey Bonzo,

Yes, kids here have started with the 5ASA’s (Asacol, Pentasa, Salofalk etc) For some they have worked for a period of time, for others not. :(

It is fortunate if you have the option to not take medication and be in remission. Are you in remission?

For some younger ones with IBD that can be the case but unfortunately for the vast majority when IBD strikes in children it has a far more severe presentation and is often very difficult to treat, unlike in adult or older teen presentations.

Most kids here are on vitamins and do exercise and live life to full when well. I think MJ may be out of the question though considering the age of most kids here and in Oz it is illegal any way. Also the parents here are well aware of what is going into their children’s bodies, the side effects, the guilt, you name it but what do you do when diet fails, when lifestyle changes fail, when alternative medicine fails, when all your good intentions fail and all the while the child in front of you becomes increasingly frail and unwell. Well you put those medications into your child’s body and/or they end up in theatre.

We know the drugs are hell but what choice do we have? In my kids case it was medication and surgery or death. Unfortunately that is the hand that the parent’s here are dealt, just as are all those parent’s with a child/children suffering a chronic incurable disease. {sigh}

I hope all continues to go well for you Bonzo and who knows, maybe when our kids are older they will find their disease has taken a more mellow route and they will be able to make different choices. With any luck there may even be cure!

Dusty. xxx
Hello Dusty sorry to hear about your child . That must be difficult I feel for you. Having crohns sucks, but we do what we can to live our life as normal as possible. How often does your child gets bloodwork? I'm other words how do you monitor his or her condition? Don't get me wrong I'm not anti medicine, I just am worried that it will do more harm for me personally
Another thing to think about, farmerswifey, is that puberty is right around the corner. If you can keep him in this good spot for the duration, he should experience normal growth. There are several of us here with boys who are entering puberty a bit late because it took some time to get their disease under control and you won't have growth if there is inflammation. Late puberty, at least for us, has brought social and emotional issues that have been such a delight to deal with *note the sarcasm!
Thanks guys, and Mehita that was my next question!! Puberty! I have a 13 year old daughter so I'm already an expert *rolls eyes*. My son is 11 so I agree, keeping him healthy for this "event" is so important. Those of you with boys, did puberty get delayed and if so by how long?
My son will be 14 in a couple of weeks and I'd guess he's about a year behind? It's so hard to tell at this age. He has some friends who could easily pass for 18 and others who could pass for 10. I know he's feeling relieved that things are finally moving along.
C hit puberty the right time I guess but his growth has been affected. But his symptoms didn't start til 14 and he was dx'ed at 15, about 5 months between start of symptoms and dx.


Super Moderator
Hello Dusty sorry to hear about your child . That must be difficult I feel for you. Having crohns sucks, but we do what we can to live our life as normal as possible. How often does your child gets bloodwork? I'm other words how do you monitor his or her condition? Don't get me wrong I'm not anti medicine, I just am worried that it will do more harm for me personally
You surely have to follow what sits most comfortably with you Bonzo.

The kids have bloods drawn very 2-3 months. All the baseline plus inflammatory markers, Iron Stores and the levels for what is being supplemented. Also Thiopurine Metabolites as needed.

Dusty. :)
Well Jack will be 15 in July and Endo says he is in early stages of Tanners 3 but you certainly can't tell anything by looking at him. It used to be that most people thought he and his younger brother (12, 13 next month) were twins know they think he is the younger brother. His younger brother has passed him in height, voice changing, body becoming more muscular, etc. in other words you can tell puberty is hitting him hard. We are certainly hoping it hits soon and are hoping the remicade finally gets him to a place to allow that to happen, we do however have a follow up appt. at the Endo next month for further evaluation. We've had weight gain since starting remi in July but no change in height (sigh) and his brother has grown an inch and a half in the same time frame and just had to buy him another new pair of shoes as he outgrows them about as fast as I can buy them. It's hard emotionally and I don't think Jack would even mind being short anymore I think he just wants to look more mature.
Just an update, bloods are back and we saw our two doctors on Monday at the Royal Children's Hospital, they said that even though my son has slight joint pain occasionally, he is in remission! His Fec Cal test was 62 (was 1800) when diagnosed, and the CRP was normal, iron not too bad, all other tests good.


Super Moderator
Woohoo! :dusty::dusty::dusty:

What a fab update farmerswifey and may it keep on keeping on! Good luck!

Dusty. xxx