Immuran & LDN?

[Guest guest]

Listmates: Would those of you who know about or have

experience with Immuran please read this thread from

the LDN children's list and comment? Thanks, DrJM

Dr. MC:

Thanks for your prompt reply. Yes of course you may

post this anywhere you think would be beneficial.

In an update. She began a small " flare " on Wed. with

cramps and loose stools. We increased probiotics and

gave her activated charcoal with meals. Last night she

slept through the night without any BM., but

went this am. Much firmer but noticible red spots

scattered throughout the stool. She may be pulling out

of it on her own (hopefully). I have read somewhere

that sometimes a flare occurs once

you begin LDN. She has been CFGFSF for at least 6

months (only eating rice, chicken, potatoes, lamb,

peeled apples and pears, bananas and some vegies (all

cooked) but is not on Epicor. (should that be

something we should start?) She has just finished a 2

month Nystatin/Flagyl treatment but the flare began

prior to us stopping the treatment.

I wonder if the LDN is neutralizing both the PS and

the Immuran, and that those in turn are not allowing

the LDN to take effect??? I know that was the early

thinking. We are desperate to get her off the PS (she

has been on it for close to 2 years) and hopefully

Immuran as well. Don't tell her GI that though!

There is also talk of Prednisone alternatives,

essentially Mega doses of the typical Antioxidants (C,

D, A as well as some flavinoids) I think Dr.

pioneered this. I am also wondering about

other anti inflamitories like Aloe Vera or ???.

I have also been reading about some work at Penn State

(by one of Dr. 's colleagues) who is using LDN

but only on alternate days with no decrease in

effectiveness. ..still early on that though. What are

your thoughts on that?

Also, perhaps we should bite the bullet and drop PS

more rapidly than .5mg per week so that it can

hopefully " get out of the way " of the LDN.

I know this is new territory here but any thoghts

would be great. Again thanks and the best of Luck in

Africa and thank you for your tireless work. XXX

-- In csb-autism-rx, JAQUELYN

MCCANDLESS <JMcCandless@ ...> wrote:

>

> XXX: The group of children and adults with whom I

> work who have Crohn's (a small group of 9) all

> contacted me because they wanted to (or they wanted

> their children) to go onto LDN. Several tapered off

> of prednisone to take just LDN, but I have not had

any patients who take Immuran or were on it before

> starting the LDN. As it is an immunosuppressant

there may be some conflict with LDN, which though

considered an immuno-modulator I found 90% of kids

with autism in my study who took it raised their CD4+

count in 16 weeks, so for that group of cells I would

have to call it primarily an immuno-stimulant or

strengthener. Sed rates are generally going down with

the LDN and the majority are very happy with it.) I

would like your permission to send your e-mail (no

names) to the adult LDN group where I am sure more

will have experience with both drugs and can answer

your question better than I. My understanding is that

most autoimmune disorders are not due to overacting

immune systems but improperly acting immune systems,

so my thrust is to help the immune system get stronger

- I test for food sensitivities and try to get them to

eat foods that do not inflame the gut (esp milk, wheat

and soy), give them Epicor to help their secretory IgA

for protection of the mucous gut lining, reduce toxic

loads, give LDN, probiotics, Vit D, etc. and test for

best nutrient protocols to also help that process,

which I assume your DAN! doctor is also doing for your

daughter - congratulations on her improvement in the

ASD arena! Let me know if I can forward your post to

LDN. Dr. JM

>

A PARENT POSTED:

> > My 15 yo daughter has made tremendous strides

since we bagan seeing her DAN dr. She is essentially

" recovered " from ASD but also has

> > Crohns/UC.

> >

> > We have been taking LDN for about 2 months going

up from 3mg - 4.5 mg over that period. She is

currently on 9.5mg of Prednisone and 100mg of Immuran.

> >

> > Her latest blood work shows her SED rate at 31

(last month was 23 and two months ago 33). Her

Prometheous Lab tests which measure whether the level

of Immuran is in therapeutic range has dropped

drastically however. The goal is 200. She has been at

about 175 for the last 6 months, but this month

dropped to 116 and her GI is panicking wanting us to

go back up to 15mg of PS and possibly go up on the

Immuran.

> >

> > All that we have changed is the LDN, specifically

> > the dosage.

> >

> > Does anyone out there know of an interaction

between these drugs?

> >

> > We are also on a cocktail of other typical DAN

> > supplements including probiotics, Omegas, vitamins

and minerals as well as the nasal MB6.

> >

> > On the ASD side she has done remarkably well. She

> > was always high functioning but has even stepped

it up a notch. Much more " there " , more appropriate and

on topic.

> >

> > We are thrilled to have this group out there to

help and must thank all of you esp Dr McCandless for

her tireless efforts.

> >

> > I encourage all of you to do as much as you can

now to hopefully avoid the crohns/UC diagnosis later.

We got ours when she was 13.

> >

> > Any other advice would be great. Never give up -

never surrender! XXX