Re: propulsid?

[Guest guest]

In a message dated 1/25/2004 12:41:43 PM Eastern Standard Time,

mick8_7@... writes:

The reason it was pulled my pharmasist tells me is because doctors were not

being viligant and it was interacting sometimes fatally with other meds

Laurie, propulsid was pulled off the market because it became apparent that

it is dangerous for those who have heart issues. Maddie was on it for years,

but thankfully, she never had heart problems (a slight Stillman's murmur).

My GI said that they were still able to get it for what is called *reasons of

compassion*. In other words, if no other med worked, he could still get it

for me. However, the reglan works even better than the propulsid did.

There are numerous kids on this list who have had the fundoplication surgery

and many as well on the DS listserv.

Donna

[Guest guest]

Laurie and Donna,

Actually, Propulsid was not a problem for kids with heart problems as long as

they didn't take certain other meds with it [ie. anti-fungal meds, mellaril,

to name a couple]. It is available on a " compassionate need " basis, but to

meet the protocol, the kid [or adult] has to meet specific criteria that can

only be qualified by some very invasive tests. It really stinks for those kids

[like ] that the drug really helped. We have to get it from Mexico now

when we need it. It is still available outside of this country. Our GI

doctor talked to the manufacturers at Janssen and they said the threat of

lawsuits

was what motivated them to pull the drug off the American market!

has had the fundoplication surgery. It was one of the smartest

things we ever did for him! ;-)

Terry

[Guest guest]

In a message dated 1/25/2004 9:40:29 PM Eastern Standard Time,

mick8_7@... writes:

E RAVED ON AND ON HE SAY S ITS EASY TO GET AND aLLS i NEED IS THE SCRIPT i

WONDER HOW EXPENSIVE

I dont' recall it being super expensive when Maddie was on it, but no doubt

that's changed since it's so hard to get.

Terry, thanks for filling us in on the propulsid controversy.

Donna

[Guest guest]

Hi Donna,

Just a little more info regarding Propulsid for anyone who needs to

know....since it's not available in the US, I guess you could say it's not

expensive...it's priceless! LOL Seriously, if you get it in the US on the

" compassionate need " basis from the manufacturer [Janssen], you don't pay for

it. It is

sent directly to your doctor by Janssen. BUT...in order to be in that program,

the child has to have some miserable tests to show that they really need it.

had all those tests when he was in the program before it was approved

orginally by the FDA. Now that they've taken it off the market, Janssen told

us he would have to go through all the testing again just so they could dot

their " i " s and cross their " t " s, so to speak. We declined and elected to get

Propulsid from Mexico. The pharmacies there carry it and it is not expensive.

It is not an illegal drug and there is no problem bringing it across the

Border or having it shipped. It is also available in Canada, but you have to

have

a doctor there prescribe it in order to get it from a pharmacy so that

presents some practical problems for us since we live in California! LOL It is

a

shame that something that should be so simple is complicated by the fear of

lawsuits!! Just to be clear, we did not make the decision to continue to use

Propulsid arbitrarily. Our GI doctor not only knows about it, he suggested it.

He knows we have to get it from Mexico. For , the benefits outweigh the

risks. We are very aware of the drugs that it can interract with and use it

under his doctor's supervision. I would never suggest that someone use it

without their doctors knowledge, approval and supervision.

Terry