Octreotide

[Raynee Tovar]

My doctor prescribed me octreotide/sandostantin. I am afraid to start it. I had given it to my daughter, (10 years old at the time) and she had a lot of GI symptoms. I gave her injections 2 times a day. They prescribed me the once a month injection. I am afraid I will have side effects and that they will last for the whole month. Does anyone have any experiece with octreotide/sandostatin? Should I just go for it and hope for the best? Thanks, ~Raynee~

[Phyllis Hume]

Hi, I did octreotide for just over one year and there was no noticeable improvement but I felt terrible on it.  The nausea was almost constant and many bowel issues too.  I had a couple of episodes when I would literally feel like I was freezing and then I was vomit and be down and out for a day.  I can revisit using it again but for now I am settling for the negatives I know.  I know everyone is different and it may be worth a trial for you to see if the pros outweigh the cons for you.

Best of luck, Phyllis

---

Date: Sun, 22 Apr 2012 13:39:43 -0700
From: luvnur...@gmail.com
To: polycysticl...@googlegroups.com
Subject: [PLD Polycystic Liver Disease] Octreotide

My doctor prescribed me octreotide/sandostantin. I am afraid to start it. I had given it to my daughter, (10 years old at the time) and she had a lot of GI symptoms. I gave her injections 2 times a day. They prescribed me the once a month injection. I am afraid I will have side effects and that they will last for the whole month. Does anyone have any experiece with octreotide/sandostatin? Should I just go for it and hope for the best? Thanks, ~Raynee~

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[sbick...@woh.rr.com]

ive took it for a yr. not much change in my cystic liver.but i do get this very very big hunger.but i doget really tired.i also have restless legs. is their anything i could take for that. i started on iron i was low.

---- Phyllis Hume <phyl...@hotmail.com> wrote:
>
> Hi, I did octreotide for just over one year and there was no noticeable improvement but I felt terrible on it. The nausea was almost constant and many bowel issues too. I had a couple of episodes when I would literally feel like I was freezing and then I was vomit and be down and out for a day. I can revisit using it again but for now I am settling for the negatives I know. I know everyone is different and it may be worth a trial for you to see if the pros outweigh the cons for you.Best of luck, Phyllis
>

[smith...@mac.com]

Hello Raynee,

I have taken sandostatin LAR for 5 years. Before I started, I got a test dose while at the Mayo clinic. It was a small dose to be sure I was not allergic to it. This was preceded by blood work:

blood sugar level (fasting)

and other blood work.

I get a baseline weight

Read more about octreotide symptoms here.

http://www.pkdiet.com/pld_octreotidesymptoms.php

The symptoms can last for about two weeks. I have had to skip my injection twice then dropped my dose to one injection or 20 mg.

I seem to be steady at 20mg now. But the biggest hurdle is to get insurance to pay for it. The cost is $2500/ injection.

I am trying to bill it as a major medical expense 

My local doc could not find a source for Sandostatin LAR.  I found two wholesalers in Hawaii.

1. McKesson (800) 422 0280

Drug wholesaler. This will bill Dr. Hori's office.

If octreotide was not available through McKesson then he was to try:

2. ASD Wholesale (800) 746 6273

I have HMSA insurance. This is the same as Bluecross/Blueshield for Hawaii.

I have a $2500 stop pay. So far for this year, I have met $2468 of $2500.

HMSA will pay 80% up to the $2500 stop pay. Once I have met an additional $32, then HMSA will pay 100% of my health care bills.

My local doc should bill this with the 

Major Medical code

J2353

Administrative Code

96372

Diagnosis codes

585.3

573.8

Let us know what you decide. 

Warmly,
Diane

On Apr 22, 2012, at 10:39 AM, Raynee Tovar wrote:

My doctor prescribed me octreotide/sandostantin. I am afraid to start it. I had given it to my daughter, (10 years old at the time) and she had a lot of GI symptoms. I gave her injections 2 times a day. They prescribed me the once a month injection. I am afraid I will have side effects and that they will last for the whole month. Does anyone have any experiece with octreotide/sandostatin? Should I just go for it and hope for the best? Thanks, ~Raynee~

[lori stephanie sase bechok]

i took octreotide for over a year.. at first, my side effects were quite tolerable.. as time went on, things got more difficult for me to the point where my daily life was greatly impacted.. i had gi issues, a lot of hair loss, muscle/joint aches, episodes of severe chills followed by a low fever (with no other cold/flu symptoms), suspended nail growth, other hormonal issues.. all of which went back to "my normal" after stopping octreotide.  i didn't notice too much of a difference liver-wise, however.. i don't believe my cysts were getting worse (which was good!).  for now, i'm not on it.. but haven't completely ruled out going back on a smaller dose if needed.  

[smith...@mac.com]

I too have had symptoms but have documented proof that my cystic liver shrunk. I get an MRI yearly and there is a special program that measures and compares my previous MRI with my current one. My cyst growth diminished by 39%.

~Diane

p.s. weight loss can be an issue. My docs and my husband are constantly observing me for weight loss. I used to be 55 kilograms. I am now about 50 kilograms.  I am five foot four inches.

[sbick...@woh.rr.com]

i two have hair loss and my nail are all wrinkle.i didnt know that was from the shots. thanks.pam

[smith...@mac.com]

According to Dr. MacKenzie Walser, restless leg is seen when the person with chronic kidney disease is not alkaline enough. I do not know if you have kidney cysts? But perhaps the same can be said with the liver cysts. Do you test your nightly urinary pH?

~Diane
On Apr 25, 2012, at 4:14 PM, sbick...@woh.rr.com wrote:

> you know it has help.i was just telling my husband my nails seem better tonite.any ideal for restless legs.
> ---- smith...@mac.com wrote:
>> Did correcting the anemia help?
>>
>> ~Diane
>> On Apr 25, 2012, at 12:27 PM, sbick...@woh.rr.com wrote:
>>
>>> they did vit D ck it was good.but i was anmeia.
>>> ---- smith...@mac.com wrote:
>>>> Dear Pam
>>>> I don't think hair loss and nail wrinkles are from octreotide.
>>>>
>>>> How is your kidney functioning and your vitamin D level? I have heard, though I do not know that hair loss can be from lack of vitamin D or low vitamin D. I suffered hair loss a long long time ago. It was when I had very little exposure to sunlight, to the sun's ray on top of my head. Once I got into the sunshine, my hair loss stopped. But then again this could just be me. Have any others had hair loss associated with low vitamin D?
>>>>
>>>> Nail wrinkles can be either from trauma, disease or lowered kidney functioning. There could be other reasons, but octreotide injections is not one of them.
>>>>
>>>> Warmly,
>>>> Diane

[Kelly S.]

I have taken Octreotide 20mg monthly for about 8 months. I have had
absolutely no problems. It is very expensive, but my insurance plan
does cover it. I haven't noticed any significant decrease in the size
of my liver. Good luck!

[saman...@verizon.net]

That is great Diane. Hopefully they can find a way for all to have diminished cyst growth. 39% occurred over 5 years? Does anyone take more than 40 mg per month or are the side effects too severe?




Apr 25, 2012 03:25:14 PM, polycysticl...@googlegroups.com wrote:

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

> > On Apr 22, 2012, at 10:39 AM, Raynee Tovar wrote:
> >
> >> My doctor prescribed me octreotide/sandostantin. I am afraid to start it. I had given it to my daughter, (10 years old at the time) and she had a lot of GI symptoms. I gave her injections 2 times a day. They prescribed me the once a month injection. I am afraid I will have side effects and that they will last for the whole month. Does anyone have any experiece with octreotide/sandostatin? Should I just go for it and hope for the best? Thanks, ~Raynee~
> >>

[Diane]

With Sandostatin LAR by Novartis, the max dose is 40 mg/ 2 injections/ $5000.

Others from Holland with Dr. Drenth take a sub cutaneous form of octreotide They take 90 mg.

This reduction is seen in me alone. The medical paper talks about an average of 3 - 5% reduction among 42 participants.

Sent from my iPhone 4s
Diane

[saman...@verizon.net]

Wow ok got it. So you were that person fromt the beginning who had a huge decrease in liver size. It never dawned on me that it was you. LOL Your diet plays a huge roll in it I think. Maybe they can bottle up or pill the nutrients from the food and administer that some how. Like Innate Response does. I just playing doctor right now but who knows right? Food and our environment have always been key.

:-)

Apr 26, 2012 01:38:42 PM, polycysticl...@googlegroups.com wrote:

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

[smith...@mac.com]

The genetic docs are now trying to find out if I have a gene, a special gene that prevents me from getting ill. And another group will try some early diet intervention with PKD patients. So we shall see, eh?

Warmly,
Diane

[smith...@mac.com]

I don't know if I am the only one or not. I think there might be several of us. They don't let me know.

Warmly,
Diane

[saman...@verizon.net]

Yes! If that's the case you will need a body guard because then we might all become Vampires and suck your blood! LoL . In any case I hope to see that day when they can find a cure for Polycystic organs.
Have a good night have to put my daughter to bed.

Sent from my iPhone

[Diane]

That gave me a chuckle. Night all. Just on my way to a farmers market. Made pan au choi for dinner. Aka cabbage loaf but it was dairy free and my husband loved it.

Sent from my iPhone 4s
Diane

[Chris C]

Just adding to the conversation: I've been taking Octreotide for 3
years and I feel amazing. I was on placebo for the first year of the
study and my liver grew. Year two I was on Octreotide and it shrunk.
I don't have the data for years 3 & 4, but I can feel a difference.
I'm pain free, and training for my first 25K race which takes place in
a couple weeks (I've been a runner and active for years, which I think
also plays a role along with diet). Diet is not as good as Diane's
but I try to stick with many of the princples she's shared. The worst
I can say is that I'm getting some marks on the hips from the needles,
but not enough to keep me out of my bikini in the summer. My advise
to anyone considering it is to try it and give your body a chance to
get used to the drug before you decide.

On Apr 22, 4:39 pm, Raynee Tovar <luvnursin...@gmail.com> wrote:

[smith...@mac.com]

Yes the injections can cause bumps …

~Diane

[lori stephanie sase bechok]

chris!!!!  this is so encouraging and you are very inspiring!!!   thank you so much for your input!  

[sbick...@woh.rr.com]

im on the list for sure now 22 mill on my liver.how long do some of the new livers last.i have no other health issues---- lori stephanie sase bechok <sase...@gmail.com> wrote:
> chris!!!! this is so encouraging and you are very inspiring!!! thank you
> so much for your input!
>
> On Friday, April 27, 2012, wrote:
>
> > Yes the injections can cause bumps …
> >
> > ~Diane
> > On Apr 27, 2012, at 6:46 AM, Chris C wrote:
> >
> > > Just adding to the conversation: I've been taking Octreotide for 3
> > > years and I feel amazing. I was on placebo for the first year of the
> > > study and my liver grew. Year two I was on Octreotide and it shrunk.
> > > I don't have the data for years 3 & 4, but I can feel a difference.
> > > I'm pain free, and training for my first 25K race which takes place in
> > > a couple weeks (I've been a runner and active for years, which I think
> > > also plays a role along with diet). Diet is not as good as Diane's
> > > but I try to stick with many of the princples she's shared. The worst
> > > I can say is that I'm getting some marks on the hips from the needles,
> > > but not enough to keep me out of my bikini in the summer. My advise
> > > to anyone considering it is to try it and give your body a chance to
> > > get used to the drug before you decide.
> > >

> > > On Apr 22, 4:39 pm, Raynee Tovar <luvnursin...@gmail.com <javascript:;>>

> > wrote:
> > >> My doctor prescribed me octreotide/sandostantin. I am afraid to start
> > it. I
> > >> had given it to my daughter, (10 years old at the time) and she had a
> > lot
> > >> of GI symptoms. I gave her injections 2 times a day. They prescribed me
> > the
> > >> once a month injection. I am afraid I will have side effects and that
> > they
> > >> will last for the whole month. Does anyone have any experiece with
> > >> octreotide/sandostatin? Should I just go for it and hope for the best?
> > >> Thanks, ~Raynee~
> > >
> > > --
> > > You received this message because you are subscribed to the Google
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> > polycysticl...@googlegroups.com <javascript:;>.

> > > To unsubscribe from this group, send email to

> > polycysticliverdi...@googlegroups.com <javascript:;>.

> > > For more options, visit this group at
> > http://groups.google.com/group/polycysticliverdisease?hl=en.
> > >
> >
> > --
> > You received this message because you are subscribed to the Google Groups
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[smith...@mac.com]

Lori congratulations for getting listed. I am hoping this all works out for you. Did you ever contact Dr. Robert Montgomery at Johns Hopkins? Sometimes he gets altruistic donors, that is individuals who are willing to give a portion of their liver to someone in need. 

Oh Lori, You are not a candidate for a liver resection? I didn't realize this. Once transplanted, I have yet to hear of someone requiring a second liver transplant so I don't know how long it lasts. One person at 68 got both a liver and kidney, his other kidney wore out. But yet to hear of any who need a second liver. This site says at least 30 years:

http://livermd.org/life.html

Dr. Ogburn who takes of ARPKD patients (children) says sometimes the kids don't take their meds and need a second transplant. Do you happen to know what drugs they will give you for immunosuppression? Do I understand correctly, you have ADPLD, no kidney cysts?

Before this happens there is plenty to do. Get yourself checked for any dormant diseases; have your gallbladder checked out; get your teeth cleaned, etc.  Be sure you are absolutely at your healthiest.  Good luck.

A few liver transplant stories from our members:

Alison UK

Candy

Debbie S

Teresa

Warmly,
Diane

[smith...@mac.com]

I am sorry, this message was cc to Lori, who is getting listed?

~Diane

[lori stephanie sase bechok]

hi diane.. it's lori.. it wasn't me who posted about the liver transplant (i'm still checking my candidacy for resection).. it kind of looks like it was me who wrote that though, because my post is immediately underneath it.. and it looks like i signed the top email .. love, lori

[lori stephanie sase bechok]

oops.. sorry diane.. just saw your last email, i see that i was cc'd .. xo lori

[smith...@mac.com]

Thanks Lori, I think Soo is getting listed, maybe?

~Diane

[Soo]

It's not me.

sbicknel is the one getting listed from what I can see.
Soo/Susan

On Apr 29, 3:08 am, smithdi...@mac.com wrote:
> Thanks Lori, I think Soo is getting listed, maybe?
>
> ~Diane
> On Apr 28, 2012, at 5:08 PM, lori stephanie sase bechok wrote:
>
>
>
> > hi diane.. it's lori.. it wasn't me who posted about the liver transplant (i'm still checking my candidacy for resection).. it kind of looks like it was me who wrote that though, because my post is immediately underneath it.. and it looks like i signed the top email .. love, lori
>

> > On Sat, Apr 28, 2012 at 7:40 PM, <smithdi...@mac.com> wrote:
> > Lori congratulations for getting listed. I am hoping this all works out for you. Did you ever contact Dr. Robert Montgomery at Johns Hopkins? Sometimes he gets altruistic donors, that is individuals who are willing to give a portion of their liver to someone in need.
>
> > Oh Lori, You are not a candidate for a liver resection? I didn't realize this. Once transplanted, I have yet to hear of someone requiring a second liver transplant so I don't know how long it lasts. One person at 68 got both a liver and kidney, his other kidney wore out. But yet to hear of any who need a second liver. This site says at least 30 years:
> >http://livermd.org/life.html
>
> > Dr. Ogburn who takes of ARPKD patients (children) says sometimes the kids don't take their meds and need a second transplant. Do you happen to know what drugs they will give you for immunosuppression? Do I understand correctly, you have ADPLD, no kidney cysts?
>
> > Before this happens there is plenty to do. Get yourself checked for any dormant diseases; have your gallbladder checked out; get your teeth cleaned, etc.  Be sure you are absolutely at your healthiest.  Good luck.
>
> > A few liver transplant stories from our members:
> > Alison UK
> > Candy
> > Debbie S
> > Teresa
>
> > Warmly,
> > Diane

> > On Apr 28, 2012, at 4:16 PM, sbicknel...@woh.rr.com wrote:

> >>> For more options, visit this group athttp://groups.google.com/group/polycysticliverdisease?hl=en.

>
> >> --
> >> You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
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> >> To unsubscribe from this group, send email to polycysticliverdi...@googlegroups.com.

> >> For more options, visit this group athttp://groups.google.com/group/polycysticliverdisease?hl=en.

>
> > --
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> > For more options, visit this group athttp://groups.google.com/group/polycysticliverdisease?hl=en.

[smith...@mac.com]

Thanks sorry I got mixed up

Sent from my iPhone 4s

Diane