3 year remission - go off meds?

Hi - new to the forums but not that new to Crohn's Disease. I'll try to be brief - and if this topic has come up before please let me know where to find it :)

My daughter Lucy was symptomatic (blood/mucous in stool) from infancy (under 6 months old). Symptoms progressed in her third year; diagnosis followed endoscopy and colonoscopy a couple of weeks after her third birthday. She went on a course of prednisolone which got her flare under control and then started 6-MP. It seemed to "take"; she was weaned from the steroids in due course and has been on 6-MP, essentially in remission for over 3 years.

At age 6.5 she's on 25mg per day; she weighs about 50-55 lbs. She has grown well, has a good diet and normal life. You'd never know she had a chronic disease unless you looked at the pictures from her scopes.

The drug levels in her blood have always been low - well below the minimum suggested level of 230. Her recent bloodwork put her TGN level at 78. This is a typical level for her. I've wondered for a long time why we keep her on the drug when the level is so low - there's no reason to believe that the 6-MP is in fact effectively keeping her in remission.

At her routine GI visit yesterday the doctor finally agreed. She said we could either increase her 6-MP dose (as much as doubling it) to get the TGN level into the therapeutic range (requiring a lot of bloodwork in the couple months after the dose change; a nightmare for a 6 year old who's becoming a needle phobe) or just take her off it. If we take her off it, first they'd do a colonoscopy to ensure there's no inflammation at all; doctor says that even micro-inflammation is likely to progress to a flare if we take her off the drug, but if she's clean, she may well do just fine.

Trouble is, she doesn't seem to know for sure. The weight of this decision is very heavy on me as her mom. Her dad and I are divorced; he trusts me to be the decision maker for Lucy's health. I'm a very informed health consumer, know how to research and read articles from the scientific journals, but this is a scary decision.

So - has anyone been in remission and chosen to go off drugs? How did it go?

I am also considering taking her to another pediatric IBD center somewhere else, if I find one that has a comprehensive program or gestalt on managing CD without drugs. If anyone happens to know of one, I would welcome referrals. So far the lead contender is CHOP (Philly).

Thanks for reading this lengthy introductory post, and for any advice that can be offered!

Jen

Thanks for your comments, Mike.

How do we "know" that her current levels of 6MP aren't contributing? We don't. But the robust research on the efficacy of this drug indicates there's a range of drug plasma level that optimizes remission; people with lower 6-TGN plasma levels are much more likely to relapse. The minimum of that target range is 230 somethings per something ... Lucy's highest ever has been 139. Mostly it's 40-80. She's checked every 3-6 months. What this tells us is that based on the research on 6MP and effectiveness, this is not enough drug in her blood to be having an effect. It's entirely possible that her lack of symptoms is unrelated to taking the med. But nope, you're right, we can't "know" for sure. That's why this is such a difficult decision.

Asacol and the 5-ASA drugs in general aren't considered first line therapies for maintaining remission for Crohn's ... 6-MP is, particularly for people whose disease extends beyond the colon. At diagnosis, Lucy had inflammation throughout the GI tract that was imaged - upper and lower. She hasn't had a small bowel follow-through or capsule endoscopy to see if there's disease activity in the small intestine.

I don't expect total and permanent remission, with OR without meds; I understand that there's no cure (yet!) for CD. I agree with your rule of thumb, but it's predicated on the fact that something is working; with the data we have, there's no reason to believe the 6-MP is working, because it's not registering at therapeutic levels.

Interesting and sad to learn that all the posts you remember from people who stopped meds, wound up with problems later. It's not a decision I'm taking lightly; and luckily it's not urgent.

I went into  a remission in my early Crohn's years, and went off my meds without telling my doctor - figuring I was fine and they were keeping me on meds to make money.  I've never been in remission since; only sporadic periods of 'less severe' and 'more severe' flares. 

I take all my meds, and struggle daily.  My advice (and I'm not a doctor) is to enjoy a good thing - if she's okay with the drugs, why take them out of the picture and chance it?

There is no cure for Crohn's.

My 2 cents, hope it helps :)

 

Jen...there are a few members here on LDN. Skurja can tell you how to access a Yahoo group where members are using this drug for various things--many for CD. If you're interested, post a message here with LDN in the title and I bet she'll see it and respond.

What is CHOP? The only "gestalt" I'm aware of on managing CD are the various diets like Maker's and Specific Carbohydrate Diet. Maybe a naturopath would have additional ideas...

We are seriously considering weaning off Asacol in the near future, but will probably wait until summer. We have made drastic dietary changes and have added probiotics, digestive enzymes, etc. I will have my son try LDN if something "stronger" is needed in the future, but thankfully right now it is not.

Also, CrazyHarry here on this forum went off all meds last fall and is using supplements and the Maker's Diet with great success.

Hi!
Just wanted to say that I have been on 6mp for almost 2 years with a 9 month break during pregnancy(Got nasty headaches for some reason while pregnant and taking it). And not once have my levels been in the therapuetic range. I have been on 100mg and then 50mg and now I am back to 100mg. But for some reason and my doctor and I don't know why, I have never felt as well as I have since starting the 6mp. Im talking I haven't felt this good since I can even remember, even before I ever knew I had crohns. So he said since clinically I am feeling so well and have no side effects from the drug why make any changes and to continue taking it. I go for another blood test in a couple weeks and Ill let you know if I meet the right range. But if I were you I would stick with whatever you are doing.
Sally

Sally - glad you are doing so well on 6MP! I don't mean to say it's a bad drug; I believe it to be a very beneficial drug for people with CD. I'm glad to hear it's helping you.

Roni - Thanks for the suggestion. I don't have any reason to switch from one med to another - she isn't having any side effects from 6-MP. I just figure, if the drug isn't doing anything, why stay on a drug. Trouble is the question - is the drug in fact doing anything!!?? Oy....

We've been lucky that Lucy has done so well. Some of the stories I hear from other parents are truly heartbreaking.

Jen

Funding is available from private philanthropic sources and the NIH, not just the drug companies. If SCD is based on credible science a researcher could seek out and receive funds. Not all research is on drug therapies. I work at a hospital that is the #3 NIH funded pediatric research facility in the country and I know about the variety of research that comes out of our institution. Case histories may be valid but they don't account for all the people for whom the diet didn't work. Without more rigorous research it's a crap shoot I'm not willing to gamble on with my child. I'm glad it is working for you.

I won't speak for the others on this, only myself. Most of you know I DO NOT take maintance Chemo for my CD. But honestly, its more for economic reasons than any other. And I've had flares while on Pentassa & whatnot.

Matthew
I will not advise any action on this. And everyone also knows I've had my share of IBD complications. Which may or may not reflect my lack of Maintance meds.

I realize this website is part advertisement, but it does show her credentials and states that she was "a biochemist and cell biologist, specializing in the study of the effect of food on the human body." She gives credit to Dr. Sydney Valentine Haas for creating the diet (scroll down and read about him).

I am not suggesting that diet will cure this. Just wanted to throw out there that there has been research on this in the past. Maybe there is something currently going on that we're unaware of.


http://www.scdiet.org/1about/gottschallbio.html

hey Jen, I mostly wanted to say hi and I am so sorry your daughter had to go through all of that as a baby and sorry that you have that worry. when I was at my sickest I was so glad it was me and not my kids or husband.

I wanted to mention a thought that always rattles around my head. I understand that CD is a chronic disease, yet I have met and talked to folks who have one flare, are treated, and it never comes back. I might be one of those, so far. the trouble is, we don't hear from those people here, they go on with their healthy lives. of course you don't want to gamble with your baby, but I am sure it feels like a gamble either way...fear of illness or life-long meds is scary either way.

I had absolute positive CD, did about a year of meds, and have never had inflammation since. I have chosen to go off gluten and that has improved my quality of life immensely, but I am still in the dark as to where the CD went and if I had it in the first place.

take care, yp

Hi Jen R, The hardest part, often, is making the decision, especially when it comes to your own child. For me, the implementation of the decision is far easier. Have pediatric therapeutic levels of 6mp been established? Btw, it's not that easy to conduct a clinical trial of SCD. The main problem is the difficulty of ensuring that a patient is in compliance. We can't lock patients up for months to ensure compliance. We can't follow them around all day to ensure they eat only what is allowed. Even if we assume patients tell the truth, they could mistakenly eat something they shouldn't. Meds are easier...we can ask the patient to come into the trial center to receive the med, thus ensuring compliance. So that leaves us with anecdotal evidence, of which there is plenty. The CCFA web site offers the following opinion on SCD: "Often, patients have questions regarding The Specific Carbohydrate Diet ™ (SCD), popularized by Elaine Gottschall, M.S., author of Breaking the Vicious Cycle . At this time, the SCD is supported only by patient testimonials, not by systematic studies. With diseases like ulcerative colitis and Crohn's disease, the only way to see if any treatment has widespread value is by appropriate, rigorous testing.The diet itself is not particularly unbalanced, but many patients find it particularly onerous to maintain. Decreasing poorly digestible carbohydrates may decrease symptoms of gas, bloat, cramps, and diarrhea in patients with IBD, but that is not the same thing as decreasing the inflammation, or affecting the disease process. Unlike the gluten-free diet for celiac sprue, which has a well-researched basis, and well-demonstrated track record for affecting the underlying mechanisms at work in the disease process, the SCD does not. Bottom line: it may be worth a try (there are plenty of other diets being touted in the marketplace), but do not abandon your conventional treatment, and keep in touch with your doctor." h ttp://www.ccfa.org/info/diet?LMI=3.2

That is a wise course . . . look to the clinical research first. I ahve jumped in on a number of posts in the past here where someone suggested some "magic bullet" for Crohns, to make the point that people with chronic illnesses are especially vulnerable to untested pie-in-the-sky nostrums. They show up here from time to time . . . and are to be avoided absent hard, factual and repeated results from supervised scientific clinical trials.

it's ok, njmom - sorry if I came off as brusque.

I totally hear you on the ain't broke/don't fix mentality. If it was clear in my mind I wouldn't be asking for opinions, hah! I feel very ambivalent ... even though the thought of her being off meds is tempting, the fear of a relapse would be stronger on a day to day basis - every little thing would assume massive significance. And of course, a child being sedated and undergoing scoping is nothing casual. On the other hand neither is 2mg/kg of 6-MP..... sigh!