Re: Re: Crohn's and LDN: 's reply to all

[Guest guest]

Hello,

I have been reading all the postings, and I wanted to reply to this one from"frank" . I have a 16 year old daughter with crohns colitis, and have heard about LDN, and joined the group to get others experiences. Her gastro dr hasn't offered this drug, but I am also interested in trying to get her off some of the meds she is on.... humira, methotexate, xifaxin etc(been off of steroids for a while). Did your daughters dr. suggest this drug? Anyone else have a flare possibly caused by the drug?

Thanks!

M.

[low dose naltrexone] Re: Crohn's and LDN: 's reply to all

Hello all,

My experience with LDN is mixed. I believe that you must take care

while you are on any other immunosuppressants. I know that Steroids

and Immuran are on that list. Remicade and Entecort may also be

contraindicated. My daughter has crohns/Ulcerative Colitis, 15 yo and

weighs 130#s. She is under the care of a GI and was on 12.5 mg of

Prednisone weaning by .5mg weekly till we got to 9.5mg of Prednisone

and 100mg of Immuran daily. She was doing fine and we began adding

LDN slowly going from 3mg to 4.5 mg nightly using the transdermal

cream prepared by Coastal. She began a major "flare" and we have

removed LDN, upped the Prednisone to 20 mg and are still trying to

get her flare under control.

The reason I think there is a contraindication is because the LDN is

the only thing we changed and over one month her SED rate went from

23 to 31 while her Immuran effectiveness level (as measured by

the "Promethius Test") went from 175 - ideal is 200- to 116.

While we want her off of the "bad" meds we have decided to try

the "breaking the vicious cycle" (BTVC) diet instead to get her off

the meds and then try LDN again if necessary.

I encourage anyone out there with similar or different experiences to

continue to write in so that we can continue to learn from each other

and develop a safe LDN protocol.

Thanks for all the help.

F

>

> Thanks so much for the abundant replies via this group and email,

and

> for filtering out information specific to my brother (Grant). I

have

> bookmarked each of the referred websites.

>

> I have high hopes for LDN but, from experience, I remain cautiously

> skeptical. I have kept a daily log of Grant's condition. If and

> when we become involved with LDN, I hope to post his progress here

so

> that it may help others.

>

> A quick summary:

>

> - Grant first complained of symptoms March 2006.

> - Weight loss from 195 lbs to 154 lbs.

> - Only occasional short periods of remission lasting (at most) 10

> days and usually only a few hours. Majority of days, no relief

from

> symptoms.

> - Most symptoms are flu-like, arthritic-like, and stomach cramps.

> - Diarrhea, although more frequent now, has not been dominant.

> - Extraordinarily difficult to maintain reasonable diet (very

> finicky).

> - Current meds: Pentasa, Entecort, Nexium, B-12, Amitriptyline,

Milk

> of Magnesia caplets, Tylenol, multi-vitamin.

> - Past meds: Sulphasalazine, Vytorine, Reglan, Lexapro, 6-MP

(liver

> not tolerable), and a whole slew of OTC meds.

>

> Needless to say, this is an unusual case as I've found no reference

> to Crohn's in the mentally retarded. Almost every aspect has to be

> interpreted and each result seems atypical.

>

> From the posts, I see that many folks are going through much more

> difficult situations, particularly with children. I wish everyone

> here the very best in health and recovery for themselves, family,

and

> children. I feel very fortunate for my own good health.

>

> Again, thanks for all of the information and I look forward to

> updates.

>

>

>

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