pediatric Crohn's LDN case file

[Guest guest]

This is from the LDN board:(sorry about the typos - those were in the post that I cut andpasted)MaraA letter to the editor in Inflammatory Bowel Disease, pre-pub electronic edition (no abstract available, so I just cut and pasted the important part of the letter):Low-dose naltrexone for treatment of duodenal Crohn's disease in a pediatric patient. A, Alkhouri N, Mayacy S, Kaplan B, Mahajan L.Department of Pediatric Gastroenterology, Cleveland Clinic Pediatric Institute, Cleveland, Ohio.CASE REPORTA 14-year-old white female wasreferred for recurrent episodes of rightupper quadrant pain of 3 years duration.On examination, she was well-nourishedwith no significant & #64257;ndings other thantenderness in the right upper quadrant.She underwent comprehensive radiologicand laboratory investigations during sev-eral follow-up visits, which did not revealany specific etiology for her pain; how-ever, IBD7 serology was consistent withCrohn's disease (CD). She underwent anesophagogastroduodenoscopy (EGD)which showed erosions with overlyingexudate in the duodenum. Biopsyrevealed & #64257;bropurulent exudate and focalactive duodenitis. Subsequent wirelesscapsule endoscopy demonstrated scat-tered areas of mild erythema and super & #64257;-cial erosions/mucosal cracking through-out the duodenum and proximal jejunum.A diagnosis of duodenal CD was madebased on these endoscopic, histologic,and serologic & #64257;ndings. Acid suppressivetherapy and empiric treatment for H.pylori infection did not relieve symp-toms. Treatment with prednisone andazathioprine resulted in severe myalgiasand stiffness requiring a wheelchair.Finally, she was placed on LDN (4.5 mgdaily) and had significant improvementof her symptoms after 4 weeks of ther-apy. A repeat EGD done 3 months afterstarting naltrexone showed complete mu-cosal healing with normal biopsies.

[Guest guest]

Amazing. I'm curious because the studies on LDN are shorter term, yet many here

seem to be on it longer. How long have people here been on LDN? Did any one stop

it and remain without symptoms?

I cut down from 4.5 to 3.6 mg and am sleeping a little better. I would like to

go back to the 4.5 at some point. I weigh about 120 lbs- not the 100 point mark

for the 3.0 mg dose, but maybe 3.6 is enough for me.

PJ

>

> This is from the LDN board:

> (sorry about the typos - those were in the post that I cut and

> pasted)

>

> Mara

>

>

> A letter to the editor in Inflammatory Bowel Disease, pre-pub electronic

edition (no abstract available, so I just cut and pasted the important part of

the letter):

>

> Low-dose naltrexone for treatment of duodenal Crohn's disease in a pediatric

patient.

>

> A, Alkhouri N, Mayacy S, Kaplan B, Mahajan L.

>

> Department of Pediatric Gastroenterology, Cleveland Clinic Pediatric

Institute, Cleveland, Ohio.

>

> CASE REPORT

> A 14-year-old white female was

> referred for recurrent episodes of right

> upper quadrant pain of 3 years duration.

> On examination, she was well-nourished

> with no significant findings other than

> tenderness in the right upper quadrant.

> She underwent comprehensive radiologic

> and laboratory investigations during sev-

> eral follow-up visits, which did not reveal

> any specific etiology for her pain; how-

> ever, IBD7 serology was consistent with

> Crohn's disease (CD). She underwent an

> esophagogastroduodenoscopy (EGD)

> which showed erosions with overlying

> exudate in the duodenum. Biopsy

> revealed fibropurulent exudate and focal

> active duodenitis. Subsequent wireless

> capsule endoscopy demonstrated scat-

> tered areas of mild erythema and superfi-

> cial erosions/mucosal cracking through-

> out the duodenum and proximal jejunum.

> A diagnosis of duodenal CD was made

> based on these endoscopic, histologic,

> and serologic findings. Acid suppressive

> therapy and empiric treatment for H.

> pylori infection did not relieve symp-

> toms. Treatment with prednisone and

> azathioprine resulted in severe myalgias

> and stiffness requiring a wheelchair.

> Finally, she was placed on LDN (4.5 mg

> daily) and had significant improvement

> of her symptoms after 4 weeks of ther-

> apy. A repeat EGD done 3 months after

> starting naltrexone showed complete mu-

> cosal healing with normal biopsies.

>

[Guest guest]

> Amazing. I'm curious because the studies on LDN are shorter term, yet many

here seem to be on it longer. How long have people here been on LDN? Did any one

stop it and remain without symptoms?

>

> I cut down from 4.5 to 3.6 mg and am sleeping a little better. I would like to

go back to the 4.5 at some point. I weigh about 120 lbs- not the 100 point mark

for the 3.0 mg dose, but maybe 3.6 is enough for me.

Between 100-125 there is some variance. So if you are 120, you

could be like 4.0 or something as a full dose, not necessarily 4.5.

Mara

[Guest guest]

> Amazing. I'm curious because the studies on LDN are shorter term, yet > many here seem to be on it longer. How long have people here been on > LDN? Did any one stop it and remain without symptoms?>> I cut down from 4.5 to 3.6 mg and am sleeping a little better. I would > like to go back to the 4.5 at some point. I weigh about 120 lbs- not the > 100 point mark for the 3.0 mg dose, but maybe 3.6 is enough for me.>> PJWith LDN, more is not necessarily better, as I guess you know.  I now weight around 116/118 (incidentaIly,I'm 5'11" and weighed 170/172 when I started the diet and LDN a year ago). I've found that 4 mg works better for me than 4.5 did. When or if LDN seems like its working less well that often means you need less of it, not more -- unlike almost all other drugs. It can build up in your tissues (has a fairly long half-life). That also depends on how effecient your liver is in processing it -- and everything else it has to process. Mine isn't all that efficient; or not as efficient as it likely should be. I did feel a bit of renewed joint pain when I cut back to 4 mg, but as I adjusted, that subsided. And I'm sleeping better again.n>> >>>> This is from the LDN board:>> (sorry about the typos - those were in the post that I cut and>> pasted)>>>> Mara>>>>>> A letter to the editor in Inflammatory Bowel Disease, pre-pub >> electronic edition (no abstract available, so I just cut and pasted the >> important part of the letter):>>>> Low-dose naltrexone for treatment of duodenal Crohn's disease in a >> pediatric patient.>>>> A, Alkhouri N, Mayacy S, Kaplan B, Mahajan L.>>>> Department of Pediatric Gastroenterology, Cleveland Clinic Pediatric >> Institute, Cleveland, Ohio.>>>> CASE REPORT>> A 14-year-old white female was>> referred for recurrent episodes of right>> upper quadrant pain of 3 years duration.>> On examination, she was well-nourished>> with no significant & #64257;ndings other than>> tenderness in the right upper quadrant.>> She underwent comprehensive radiologic>> and laboratory investigations during sev->> eral follow-up visits, which did not reveal>> any specific etiology for her pain; how->> ever, IBD7 serology was consistent with>> Crohn's disease (CD). She underwent an>> esophagogastroduodenoscopy (EGD)>> which showed erosions with overlying>> exudate in the duodenum. Biopsy>> revealed & #64257;bropurulent exudate and focal>> active duodenitis. Subsequent wireless>> capsule endoscopy demonstrated scat->> tered areas of mild erythema and super & #64257;->> cial erosions/mucosal cracking through->> out the duodenum and proximal jejunum.>> A diagnosis of duodenal CD was made>> based on these endoscopic, histologic,>> and serologic & #64257;ndings. Acid suppressive>> therapy and empiric treatment for H.>> pylori infection did not relieve symp->> toms. Treatment with prednisone and>> azathioprine resulted in severe myalgias>> and stiffness requiring a wheelchair.>> Finally, she was placed on LDN (4.5 mg>> daily) and had significant improvement>> of her symptoms after 4 weeks of ther->> apy. A repeat EGD done 3 months after>> starting naltrexone showed complete mu->> cosal healing with normal biopsies.>>>>-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

Hi

Most people stay on LDN for life, especially those with cancer and ms. The theory is that if you stop taking it the cancer and ms comeback. Some people only take it every second day.

Sky

To: BTVC-SCD Sent: Sat, 9 January, 2010 12:52:56 AMSubject: Re: Re: pediatric Crohn's LDN case file

> Amazing. I'm curious because the studies on LDN are shorter term, yet many here seem to be on it longer. How long have people here been on LDN? Did any one stop it and remain without symptoms?> >

See what's on at the movies in your area. Find out now.

[Guest guest]

Thanks for the post. I have similar gastric symptoms, although they are relieved by acid blockers (proton pump inhibitors). I'm wary about needing to use PPIs  long term.  I'm seriously considering LDN and might talk to my GI about it.

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