Octreotide for BP and diarrhea

[Guest guest]

Hi,

Right now I'm struggling with this reluctance of our internist and Chuck

to take a drug prescribed by Dr. Fealey at Mayo's. It has helped in OH

with people with PAF and has helped with diarrhea due to AIDS or cancers.

However, evidently it is not fully approved for OH.

Has anyone had any experience with octreotide (Somatostatin analogue) ?

It has to be injected subcutaneously every day. If anyone has tried it,

please let me know.

Frustrated,

Barbara Woodford (Illinois)

[Guest guest]

Barbara,

I checked with several people who are taking something in injection form, but

they all said that is not what they are taking. So I can not help you there.

Try looking it up on some of the drug websites like the s Hopkins

Pharmaceutical site. Maybe Jim Stark knows something about it.

Tell Chuck that PAF is a part of MSA, so if it helps PAF, it should help at

least part of MSA. Unless my internist could give me a reason for not using it

over someone from Mayo saying to use it, I would be inclined to take the Mayo

advice. ) But that is a personal decision I know )

Take care, Bill Werre

==============================================

>

>

> Date: 2002/07/31 Wed PM 01:11:00 CDT

> To: " shydrager post " shydrager >

> Subject: Octreotide for BP and diarrhea

>

> Hi,

>

> Right now I'm struggling with this reluctance of our internist and Chuck

> to take a drug prescribed by Dr. Fealey at Mayo's. It has helped in OH

> with people with PAF and has helped with diarrhea due to AIDS or cancers.

> However, evidently it is not fully approved for OH.

>

> Has anyone had any experience with octreotide (Somatostatin analogue) ?

> It has to be injected subcutaneously every day. If anyone has tried it,

> please let me know.

>

> Frustrated,

>

> Barbara Woodford (Illinois)

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Barbara,

I have taken octreotide >sandostatin<. Most of my doctors never

heard of it. The doctor treating my orthostatic hypotension

prescribed it after all the usual drugs failed to help. He has

studied it and is on the physcians list for autonomic specialist. I

will give you my expereince with it so far and some of the facts I

have learned on it. First I want you to know I have no working dx on

the neuro part, we are in process. The OH is however confirmed after

numerous tilt table test and others. I was put on the injections in

Oct. 1st the doctor gave me one and then did a simulated tilt table

test to make sure all was ok. He wanted to see if I had a bad

reaction or if it made my BP go up too much. I did fine. My doses

were gradually increased, but always monitored results. Octreotide is

an acetate salt and perhaps that is why it is effective on bp. What

is interesting to me is I recently learned it is similar to the

natural hormone samostatin and is a potent inhibitor of growth

hormones. Interesting because of some of the newest studies and

findings. There are some side effects to be aware of, one I found to

be a great side effect for me. Although it was designed to help ppl

w/ diarrhea, it most times has opposite effect on autonomic

patients>> It cured my constipation. It can cause gall bladder

problems I recently had to have mine removed, but we aren't sure if

that was why it became bad or due to my other problems. Any patient

on this medication has to have their insulin levels checked

regularly, their TSH levels on the thyroid along with heart and BP.I

was off it for 2 months because of my tummy problems. I was just put

back on the octreotide and will be in a study for it. I have a doctor

very knowledgeable on OH and this is the only thing he treats me for.

It has helped my OH w/ good and bad side effects. I hope this helps I

can give you more info if needed. Wow for once I have information

that may help. good luck and take care. W/ WV hugs... Rose