3 year remission - go off meds?

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Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 9:42 AM (GMT -7)   
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

MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 2/19/2008 9:56 AM (GMT -7)   
Well one definition of Crohns disease is that it is a chronic, incurable inflammatory bowel condition. That says to me that like other chronic incurable diseases -- diabetes, arthritis, lupus for example -- total suspension of medical therapy is not a well advised course. It may well be that your daughter would do well for some time with no meds at all, but I would be very skeptical of that continuing for the rest of her life. How do you know that her current levels of 6mp are not contributing to her long-term remission? Maybe she would do just as well on a less strong medication like asacol . . . we all know this is a very idividual disease. But I have seen a number of posts on this forum from patients who stopped all meds and invariably wound up in serious difficulty down the road, even after resections and other surgeries they hoped would have eliminated all disease. I suppose there may be cases or spontaneous total and permanent remission with no meds, but I have not heard of them. A good rule of thumb in my experience is that if something is working, don't mess with it.

Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 10:08 AM (GMT -7)   
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.

ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 2/19/2008 10:21 AM (GMT -7)   
very real dilemma indeed. On one side, there is this dreaded chronic disease and the other side a very valid question on whether the meds(in any amount) are helping or not. I am in the same boat as you are..I myself am not a patient but our daughter(now 4, DXed when almost 2) is!! Since her last flare in Dec 2006 which
lasted until June 2007, we've moved away from *all* standard Crohn's medications. According to her pediatric GI, this was a huge risk and we both agreed totally but we both noticed during her flare that she did not repond to Sulfasalazine(which she iniitially did), Imuran gave hear pancreatitis, Prednisone worked only for 2 weeks at the most and the only option left was Remicade. We did not like any of these medications considering their toxicity and possible list of side effects.

She is now in remission(touch wood) using LDN (transdermal), homeoapthic medications, probiotics, std Vitamin supplements. We decided to take up the risk considering her age and went on non-standard path. Will it hurt in future? May be..May be not!!

I would still weigh in other forum member's advice, advice from her GI specialist!!

Good Luck.
================================================================

Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 2/19/2008 11:13 AM (GMT -7)   
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 :)
 
Diagnosed with UC 8 years ago/Diagnosed with Crohn's 6/26/2007
Canasa / 1 per day
Azathioprine / 100 MG Day
Colazal/ 9 per day
Entocort/ 3 per day
Humira
 
Tried:
Asacol / 12 per day
Levaquin 1 per day
Flogyl 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!) 
 


Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 12:07 PM (GMT -7)   
Thanks Ana - I know of some other moms whose kids have tried, or would like to try, LDN. I don't know much about it, myself.

Pampers - I see your point. But going off meds AMA, without understanding of how they are helping you, is really different than going off meds with the doctor's support, because there is no evidence they are helping you. I know there is no cure. Why chance it, you ask - because she's only 6, and these are serious drugs, and she has a lifetime of this disease ahead of her (until they find a cure!); I'd rather minimize the potentially toxic elements in her little body while she is growing, where possible, and save them for later if/when she gets sicker.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/19/2008 12:37 PM (GMT -7)   
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.
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 12:52 PM (GMT -7)   
CHOP = Children's Hospital of Philadelphia

I work in healthcare quality so I'm a big believer in evidence based treatments. I know there is evidence of benefit of probiotics and fish oil in CD, but as far as I can tell there has been no research done to support or refute claims for/against the Specific Carb Diet. Therefore I'm skeptical of SCD; don't know anything about Maker's.

SallyC
Regular Member


Date Joined Nov 2004
Total Posts : 158
   Posted 2/19/2008 12:53 PM (GMT -7)   
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
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/19/2008 4:46 PM (GMT -7)   
What about putting her on a milder maintenance med like pentasa?

I hope and pray she stays well. I hate hearing about kids suffering with this illness.
Best wishes.

Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 6:19 PM (GMT -7)   
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

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/19/2008 6:23 PM (GMT -7)   
Unfortunately there will not be any studies or randomized controlled trials investigating the efficacy of the SCD or other diets because drug companies or the CCFA do not want it cutting into their bottom line. There are plenty of case histories out there but not much else. I for one believe in the diet and it is putting me into remission when pred could not. I'm down to my 5 mg on pred and feel great.
Pharmacy Student, Midwestern University
Class of 2009
 
I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.
 
If you have any questions about medications/drugs, feel free to contact me here privately.  I will attempt to answer them ASAP.
 
3200 mg Asacol
 
HAVE YOU CONSIDERED THE SCD DIET?  IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!


Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/19/2008 6:28 PM (GMT -7)   
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.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/19/2008 7:47 PM (GMT -7)   
I'm one of those on 6MP who is not at a therapeutic level but remain on the drug because my doctors and I believe it is helping. I have been on much higher doses and became toxic, so my level was lowered. I believe it is helping me to acheive a relatively normal life. But I am also a strong believer in maintenance drugs. Because : I self diagnosed at 13, and was basically told I was crazy. (My Mom had CD, so I pretty much knew what I was looking at) I went untreated for the next 10 years, with some dietary changes and almost no symptoms. However, when the CD hit again, it hit hard and fast. The damage that was done in those years could not be fixed with any type of drug. I ended up with 3 resections in just over 7 years. Had I been taken seriously and been put on medication as a teenager, maybe I would not have had to have all of those surgeries. Who knows. I was not symptomatic at the time so without my parents pushing for testing and because CD was not as understood, I was just left to live my life.

I guess I am just a big believer in, if it ain't broke, don't fix it.

I hope your daughter continues to do well!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/19/2008 8:25 PM (GMT -7)   
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.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/20/2008 4:11 AM (GMT -7)   
Hi, If you want to take your daughter off all meds. I would first get a second opionion. I have been in remission for sometime but only do to being on my meds. If I would stop all my meds I would fall out of remission and I would need another surgery.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/20/2008 6:52 AM (GMT -7)   
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
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/20/2008 7:24 AM (GMT -7)   
EMom, I don't mean to be harsh, but that website didn't give references to credible research in peer reviewed journals. Self published books, web publications, and poster presentations at conferences are all interesting and may be sound science, but until it's indexed in PubMed it doesn't rank as real research in the science world.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 2/20/2008 7:51 AM (GMT -7)   

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


48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/20/2008 2:29 PM (GMT -7)   
Likewise, I don't mean to sound harsh, but I am well aware there was no reference to research in peer reviewed journals--that is why I put the disclaimer that this website is part advertisement. My only point in posting it was to say this *has* been researched to some extent. I haven't tracked down their published research, though, but they *do* have published research. Whether it meets the criteria you are looking for, I can't say. Simply trying to help.

I personally am willing to try anything and everything to keep my son off the big gun drugs. This diet *seems* to be working; only time will tell.

Best wishes and continued success and good health for your daughter. This is tough on all moms...
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/20/2008 6:09 PM (GMT -7)   

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."

http://www.ccfa.org/info/diet?LMI=3.2


Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivit, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. Off SCD diet but wheat was iffy so back on SCD modified to include potatos and rice.   


Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/21/2008 7:24 AM (GMT -7)   
EMom, "published research" is indexed in PubMed. Anything else is opinion and speculation and case study. I'm different from you in that I don't approach it as "do anything to stay off hard core meds." My approach is "do things that have evidence backing them up showing they're likely to be effective; do the least toxic things before the more toxic things."

njmom - I understand very well that it's difficult to do clinical trials of a dietary intervention. However, there are copious amounts of prospective, observational data on diet in large populations of people on other subjects - whether certain types of foods influence people's likelihood of developing certain diseases like CVD, diabetes, cancer. Similar data could in fact be collected in a rigorous manner. There is always reporting error when lifestyle interventions are tested/studied but that doesn't mean it's impossible.

I've seen CCFA's statement, which generally agrees with my own POV.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/21/2008 7:41 AM (GMT -7)   
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.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/21/2008 12:47 PM (GMT -7)   
Jen R, didn't mean to step on your toes by telling you something you already knew. That kind of thing is bound to happen on this forum, where we don't really know each other. Thanks for mentioning the gestalt/CHOP - good to know.
 
This decision is tough. Right now, I tend to favor the "If it ain't broke, don't fix it" approach. My daughter was in remission on Entocort, just one pill. Tried to go off (by tapering slowly, one day on/off) and landed in the hospital on the third of the off days. I noticed the second time she went on Entocort, it took twice as long for the med to be fully effective. Since that hospitalization, in July 2006, she has been on Entocort nonstop. On only one pill since last May. Hasn't tried to go off, again, because doesn't feel like taking chances...even though a top Mt. Sinai opined that the one little pill can't be doing much, it was the elimination of that one little pill that landed her in the hospital.

Jen R
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/21/2008 12:54 PM (GMT -7)   
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!
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