Re: Ok can someone tell me???

[Guest guest]

Hello All,

Well once again I am seeking your help, I went to the GI doctor yesterday

and last Monday when I got out of the hospital my counts were normal went

through the week with not bad pain but pain and then very little nausea, went

back to work on Monday left work with a bad back ache but thought that was

from just going back to work but then Tuesday the nausea started again and

the pain was in the pancreatitis and back so I knew something was happening,

but also knew I was headed to U of M to see the GI , which she basically

told me that there isn't anything they can do at this point my ducts are open

and there are no cysts so it is just trying to control the pain, but she put

me on some shots that I have to give myself 3 times a day. said they have had

good luck with them with the inflammation and some of the pain, we will see

but just wondered if anyone else has been on it or know anything about it..

the drug is called " Sandostatin " (octredtide acetate injection) if so I would

love to hear what you have to say about it or weather you had any luck with

it, I wasn't sure if I would be able to do it to myself but I surprised my

self and was able to give myself the first shot today. Well, thanks all and I

hope you are all doing well..

P.S. Has anyone heard how Henry is doing?

Wishing you all a pain free day

from Michigan

[Guest guest]

In a message dated 11/8/00 6:06:14 PM Eastern Standard Time, mrsteep1@...

writes:

<< wondered if anyone else has been on it or know anything about it..

the drug is called " Sandostatin " (octredtide acetate injection) if so I would

love to hear what you have to say about it or weather you had any luck with

it, >>

Hi , I took octreatide about three years ago. I had to give myself

injections three times a day. I have divisum and I am unable to eat most of

the time. Sometimes I can eat one-half of a teaspoon for a while and if I am

very careful I sometimes can work up to one-fourth of a cup every 45 min.

Most of the time I can't eat at all and that is why I am on tpn most of the

time. When I took the Octreatide it did help me to eat more. I was able to

eat one-third to one-half of a meal at a time. The bad news is I started

having very bad chest pains from that drug. My chest hurt so bad and I also

had pressure on my chest. I had to go to a cardiologist and have an

angiogram plus lots of other test. The doctor said that my heart was fine

but ever since I took Octriatide I get bad chest pain if I get too tired or

if I am too weak. I have to be very careful since I took that medicine. The

cardiologist called the drug company that made that medicine and they told

him that one percent of all patients who take the drug get chest pains. I

know that that drug has damaged me for life. I don't know what it did to my

heart but it did do something bad.

Jim from the group also took the medicine and had no side effects. If you

are taking it and it is helping you then if you stop taking it, it is very

possible that it won't continue to help you if you start taking it again. I

was taking a large dose of it and when I developed the chest pains I stopped

the drug and then when I started it again only in a smaller dose it wouldn't

help at all. I later learned that even if I took the same dose after I

stopped it and started it again it would not work for me anymore. , it

probably won't have the same effect on you since only one percent of the

people who take it develop chest pains but if I could do it over I would

never take that drug. It has changed my life for the worse. It has been

three years and I still get chest pains. I have to be so careful. I hope I

have given you some helpful information and not scared you too much. This

was only my experience with the drug. I was told that the drug keeps the

pancreas from making enzymes therefore you have less enzymes trying to pass

thru the small duct. It keeps the pancreas dry. Good luck, Shirley

[Guest guest]

In a message dated 11/8/00 8:34:56 PM Eastern Standard Time, mrsteep1@...

writes:

<<

Thanks Shirley for the info, this is all scarie so I want to hear the

good and the bad, it is something I will watch for thou how long were

you on it? I have had one shot of it tomorrow I start the 3 times a

day, She did say that I have to stay on it and see if it works and if

I go off of it it wouldn't work if started back up again, I just wish

there was a cure for this dang disease... hope you are doing well How

is the Arm?

praying for you shirley... thanks again your friend

>>

Dear , I think I was only on it for a couple of months. I can't remember

exactly how long but I know it wasn't very long.

My arm is still swollen and sore. I am now on penicillin and I am scheduled

to have a CT Scan with contrast on my neck and chest next week. I hope that

the penicillin cures me so I don't have to have those Scans. I have had so

many Scans over the last ten years.

I sure do hope that the Octreotride helps you. What is the doctor using

it for? Do you have a hard time eating also or is it for pain relief? I

will be thinking of you and praying for you. Shirley

[Guest guest]

Thanks Shirley for the info, this is all scarie so I want to hear the

good and the bad, it is something I will watch for thou how long were

you on it? I have had one shot of it tomorrow I start the 3 times a

day, She did say that I have to stay on it and see if it works and if

I go off of it it wouldn't work if started back up again, I just wish

there was a cure for this dang disease... hope you are doing well How

is the Arm?

praying for you shirley... thanks again your friend

> In a message dated 11/8/00 6:06:14 PM Eastern Standard Time,

mrsteep1@a...

> writes:

>

> << wondered if anyone else has been on it or know anything about

it..

> the drug is called " Sandostatin " (octredtide acetate injection) if

so I would

> love to hear what you have to say about it or weather you had any

luck with

> it, >>

>

> Hi , I took octreatide about three years ago. I had to give

myself

> injections three times a day. I have divisum and I am unable to

eat most of

> the time. Sometimes I can eat one-half of a teaspoon for a while

and if I am

> very careful I sometimes can work up to one-fourth of a cup every

45 min.

> Most of the time I can't eat at all and that is why I am on tpn

most of the

> time. When I took the Octreatide it did help me to eat more. I was

able to

> eat one-third to one-half of a meal at a time. The bad news is I

started

> having very bad chest pains from that drug. My chest hurt so bad

and I also

> had pressure on my chest. I had to go to a cardiologist and have

an

> angiogram plus lots of other test. The doctor said that my heart

was fine

> but ever since I took Octriatide I get bad chest pain if I get too

tired or

> if I am too weak. I have to be very careful since I took that

medicine. The

> cardiologist called the drug company that made that medicine and

they told

> him that one percent of all patients who take the drug get chest

pains. I

> know that that drug has damaged me for life. I don't know what it

did to my

> heart but it did do something bad.

>

> Jim from the group also took the medicine and had no side effects.

If you

> are taking it and it is helping you then if you stop taking it, it

is very

> possible that it won't continue to help you if you start taking it

again. I

> was taking a large dose of it and when I developed the chest pains

I stopped

> the drug and then when I started it again only in a smaller dose it

wouldn't

> help at all. I later learned that even if I took the same dose

after I

> stopped it and started it again it would not work for me anymore.

, it

> probably won't have the same effect on you since only one percent

of the

> people who take it develop chest pains but if I could do it over I

would

> never take that drug. It has changed my life for the worse. It

has been

> three years and I still get chest pains. I have to be so careful.

I hope I

> have given you some helpful information and not scared you too

much. This

> was only my experience with the drug. I was told that the drug

keeps the

> pancreas from making enzymes therefore you have less enzymes trying

to pass

> thru the small duct. It keeps the pancreas dry. Good luck, Shirley

[Guest guest]

i can tell you almost everything about sandostaton. my daughter has

sandostaton & morophine & benadryl & tpn & lipids & something for nausea in her

central line everytime she has an attack it is wonderful for bringing the

inflamation and amilyse and lypayse( i dont think i spelled all of this right

) down very quickly BUT IT ( the sandostaton) IS NOT COMPATABLE WITH

ANYTHING AT ALL except saline.my 15yr has now had 28 attacks in 3 1/2 yrs her

levels go up to 2000-3000 within an hour of a visable onset of an attack .

the sandostaton brings them down within 7-8 days if the levels are not over

3000.

i hope this will help you some.

well i just got home from working 12 hours it is now time to go

to bed

see you all later.

hugs and prayers are with you all .

dot

[Guest guest]

In a message dated 11/9/00 12:10:42 PM Eastern Standard Time,

DOTDOTONE@... writes:

<<

i can tell you almost everything about sandostaton. my daughter has

sandostaton & morophine & benadryl & tpn & lipids & something for nausea in her

central line everytime she has an attack it is wonderful for bringing the

inflamation and amilyse and lypayse( i dont think i spelled all of this

right

) down very quickly BUT IT ( the sandostaton) IS NOT COMPATABLE WITH

ANYTHING AT ALL except saline.my 15yr has now had 28 attacks in 3 1/2 yrs

her

levels go up to 2000-3000 within an hour of a visable onset of an attack .

the sandostaton brings them down within 7-8 days if the levels are not over

3000.

i hope this will help you some.

well i just got home from working 12 hours it is now time to go

to bed

see you all later.

hugs and prayers are with you all .

dot

>>

Dot did I ask you if your daughter is diabetic? Shirley