Octreotide, I Need Some Help

[jonathanireland]

Hey my name is Jonathan im 19 years and Im from Ireland. I diagnosed with POTS 3 years ago and having convulsive syncope events for over 6 years now. Iv gone through the usual Beta- Blockers, Flurnef, Midodrine. at the moment im on propranolol and midodrine which i am getting some releif from. So my Question is the drug OCTREOTIDE (SONDASTATIN) I have been reading alot about this drug and it seems to prove very sucessful in the treatment of Orthostatic Intolerance, and postural tachycardia along with postprandial hypotension all of which i experience on a daily basis. my cardio and family doc over here has never heard of the drug and my pots specialist has never used it either so im kinda stuck as what to do. I would be very greatful for any Information. Also I would be willing to travel to another country for the right treatment if i have too.

Jonathan xxx

[Noreen]

Hi and welcome to the group-

I had only heard of the drug in relation to cancer so I went to wikipedia and found this-

Since octreotide resembles somatostatin in physiological activities, it can:

Inhibit secretion of many hormones, such as gastrin, cholecystokinin, glucagon, growth hormone, insulin, secretin, pancreatic polypeptide, TSH, and vasoactive intestinal peptide.

Reduce secretion of fluids by the intestine and pancreas.

Reduce gastrointestinal motility and inhibit contraction of the gallbladder.

Inhibit the action of certain hormones from the anterior pituitary.

Cause vasoconstriction in the blood vessels.

Reduce portal vessel pressures in bleeding varices

It has also been shown to produce analgesic effects, most probably acting as a partial agonist at the mu opioid receptor.[1][2]

So while it can increase vasoconstriction, it would seem that you would exchange that for other side effects we fight against such as Gastroparesis (slowed gastro motility )

Have you seen an endocrinologist? Who is recommending this?

[wareagle]

I'm trying to paste the link to a discussion about this drug for you! If it doesn't work just do a search for "octrotide" and it will bring it up.

Several of our members are on this medication and should have information for you. Keep us posted!

[MightyMouse]

Jonathan, I was just out to see an autonomic specialist and we discussed Octreotide. He suggests a starting dose of about 50 ml (I think that's the right units) per injection, 2 times a day, as much as 3 times a day. They're about to publish a study on the use of Octreotide injections for folks who have the hypermobile issues and POTS; If I recall correctly what he described to me, it did a really nice job of raising bp, stabilizing heart rate, without causing hypertension. I do know others in the UK using Octreotide-perhaps they'll chime in. Unfortunately, many of the docs there are suggesting max of 25 ml per injection, which is probably too low to get much benefit. My doc was saying he has patients safely taking up to 100 per injection.

I've trialed the med myself. I did have side effects initially, the first hour--it caused some intense abdominal cramping. I'm told that the longer I use the medication, that the side effects would not be nearly as bad.

good luck!

[Noreen]

They're about to publish a study on the use of Octreotide injections for folks who have the hypermobile issues and POTS; If I recall correctly what he described to me, it did a really nice job of raising bp, stabilizing heart rate, without causing hypertension.

nina-

Can you give us any further info on the study of use of this drug in hypermobile/autonomic issue?

[MightyMouse]

I can't right now b/c the study isn't published yet, but as soon as it's released, I'll post a link.

I can give you general info though on mechanism of raising bp-- octreotide tells your gut that it's not time to digest right now, and forces some the blood flow used for digesting (30-40% of your blood volume) out to the rest of your body. That's why the cramping can happen... one of the worries of the researchers was that it might cause hypertension, but they were surprised to find that in hypermobile patients, that didn't happen.

Nina

[Noreen]

I can't right now b/c the study isn't published yet, but as soon as it's released, I'll post a link.

Thanks, Nina.

Obviously my sieve like memory has struck again.

[jonathanireland]

Thanks guys for all your comments.

Ya see my problem is that maybe only 3 doctors in Ireland who can Diagnose this condition and most dont even know what POTS is my cardio said he had never seen anything like it and hes no spring chicken lol.

So i guess i may have to travel to the UK in order to find a doctor who would be willing to prescribe this drug. I also had myself convinced one day that i would travel to US to see doctor R. Hoeldtke Who treats his POTS patients with this drug. Im only 19 and i have no job or college because of the constant daily fatigue and all the other things that come with POTS.

I am having SOME reilf with the MIDODRINE so im guessing the OCTREOTIDE might be the best option for me

[MightyMouse]

Dr. Grubb also treats some patients with Octreotide, as do some others. Good luck in finding a doctor with the NHS, I know it's no easy feat. Perhaps try to hook up with other UK patients here--I know Persephone is another UK patient and has used this med. You may want to message her.

[pat57]

Hi,

I have neurocardiogenic syncope, orthostatic hypotension and convulsive syncope.

And since we share the last I must ask, are your convulsions preceded by

tachycardia or bradycardia. If its brady (like me) maybe you should ask

about Norpace. Norpace gave me my life back.

good luck!

[corina]

hi jonathan, i'm in the netherlands and about to start this med in a few days. i can send you information on the med for you and/or your doc to read and work out whether it would be for you to try. i know that there's a doctor at the bristol heart institute (UK)who might be willing to work with you. i was given his name and adress by persephone.

good luck in finding answers and treatment that works best for YOU!

take care,

corina

[jonathanireland]

pat to answer your question em well i dont really know on my second tilt my blood pressure and pulse went from normal range 120/80 Pulse/78 to 190/140 Pulse/120 and then 3 minutes later everything dropped to 70/40 Pulse 38 but i didnt have a seizure but i started to feel then that i was just about to get one when the doctor tilted me back flat as i said to her i didnt want her to make me have one mainly because i didnt wanna feel s**t for the whole day.

Corina, if you wouldnt mind sending me on some info that would be so great im new to this place so i dont even know how to send private messages yet but il mess around with this for a while and eventually il probably get my email to you ur a star thanks chick. I hope you find this drug helpful as for me its the only option.

And hey everyone i got an appointment today with apparently one of the worlds "best" syncope doctors who is on my doorstep i quote, Prof Rose Anne Kenny november 2nd of this year and she is familiar with using this Drug Octreotide so wooohooo finally get something sorted.

Thanks everyone for all yer great help

[corina]

jonathan, on the left part of every post is an enveloppe on which you can click to send a pm. if you want to you can send me your email adress so that i can send you the information. anyone else who's interested please let me know!

corina

(btw jonathan, i'm not really a "chick", i recently celebrated my 47th birthday)

[goldicedance]

I am one of the few on this forum who have had actual experience with Octreotide. I tried it for about 9 months in the early 1990's under the treatment of Dr. R. Hoeldtke, then head of endocrinology at WV University. He was using Octreotide for some POTS patients and having success with it. I got to the point where I could stand for almost 60 minutes using the poor man?s tilt test while on octreotide. My pulmonologist/internist in DC was hesitant to give me the monthly injection because she naturally was concerned about liability issues. She admitted she had no familiarity at all with Octreotide. At first she had considered having me sign a release. She did, however, have me talk to the manufacturer of Octreotide who convinced her of its safety.

I took the monthly injection for a few months following about 4 months of the multiple daily injections. Over the months my blood pressure increased a lot so there were times I waited an extra week or two. By about month 4 I developed a sludgy gall bladder and had to have it removed. At that time I also got my appendix removed?kind of a 2fer with the anesthesia risk. Dr. Hoeldtke seemed a little relieved that I was not angry with him about the crappy gall bladder. At that point, I stopped Octreotide because my blood pressure became rather high and I had a lot of health issues.

For the past several months, I was trying Procrit. I had a few and then the Mayo oncologist raised the fear of death with me?greatly increased chance of heart attack and stroke. Mayo now makes chemo patients sign releases if they want Procrit. They are then only considered for Procrit if their cancer has metasticized. I decided that sounded worse than the alternative. The oncologist suggested I try again Octreotide. The oncology department has a lot of experience with octreotide. The beauty of the daily octreotide is it is short acting. He said it can cause cramping (yes, to that one) and sometimes either diahhrea or constipation. Not to mention destroying your gall bladder.

Here are some references:

http://jcem.endojournals.org/cgi/content/full/83/2/339

http://jcem.endojournals.org/cgi/content/abstract/68/6/1051?ijkey=434b2b37cc1c0a55b86d7e6df093015407a1f2f1&keytype2=tf_ipsecsha

So, I will give it a try. Octreotide is terribly expensive ? used to be about $3000 for a month?s worth.

Let me know how you are doing with it.

Lois

________________________________________

[flop]

Hi Jonathan,

I'm in the UK and am on Octreotide. I had tried all the usual medications (water, salt, compression, fludrocortisone, beta-blockers, SSRI, midodrine, then Ivabradine (not a "usual POTS med")). I got referred to a specialist centre in the UK but they were very slow to actually give me anything to treat my POTS and syncope. Eventually I was put on a tiny dose of Octreotide in May this year (25 micrograms sub/cut twice daily).

I found the injections to be immediately helpful. I take them on top of a whold host of other medications. When I started the injections I was under close monitoring as a day-patient in hospital (probably over cautious). Before my first injection I could stand for 2 minutes and my heart rate rose from 70 to 120/min during that time. By 30 mins after the first injection I could stand for 9 minutes before needing to sit down and my heart rate stayed in the 80s.

At the 25 mcg dose I get relief of my symptoms for about 2 hours before it wears off. I did ask the UK specialists to increase my dose but I am still waiting for a decision from them.

I recently traveled to the USA and saw several doctors. One of them is using Octreotide for "refractory POTS" (where patients haven't responded to the usual medications). The starting dose being used in that hospital is 50 micrograms two or three times daily (they laughed at my "tiny" dose and suggested doubling it immediately). They titrate the dose up to 100 micrograms three times daily depending on the patient's response. I have just seen my own GP and managed to get a prescription for the increased dose and also larger syringes.

My initial thoughts on octreotide was that it was a "wonder drug" - it made a big difference. I'm now not so sure but I suspect that I am doing a lot more physical activity than previously and I am therefore now struggling more with the pain and fatigue side of my conditions rather than the BP and heart rate which previously were my predominant symptoms.

The initial side-effects for me were abdominal pain, bloating and cramping, constipation and diarrhoea. It makes your stools go a funny colour and you can't digest fats properly anymore (octreotide stops the gall bladder from contracting). I have chronic problems with my bowels and usually have a lot of diarrhoea, once settled on the injections they actually seem to reduce my diarrhoea slightly. For the first month or two I was very bloated and looked about 8 months pregnant but that has also settled down.

I've met Prof Rose Anne Kenney a couple of times at conferences in the UK (STARS have an annual patient's day at the heart rhythm congress). She seems very nice and very knowledgable. I know her interest is in syncope (particularly in the elderly) and if anyone in Ireland is going to be able to help you then she is probably that person. I don't know if she is using octreotide in her patients but if not she is the sort of doctor who would research it for you.

Flop

[jonathanireland]

goldicedance and FLOP!

thank you so so so much for yere wonderful posts i really got bag loads of information from then, hey flop cant believe you've met my specialist before i have hahahaha. I emailed her before reharding octreotide and it is something she is familiar with so i see ner the 2nd of november so fingers crossed shell treat me with it just too see has it an effect on my symptoms.

Thanks so much again guys ur so great.

god bless.

xxx

[Rachel]

Hi Jonathan,

My specialist recently prescribed Octreotide for me. My insurance won't cover it, though, so I haven't tried it. Here is a link to an article abstract of a small study that was done on Octreotide and POTS patients. Use of Octreotide in the Treatment of Refractory Orthostatic Intolerance

I hope that you are able to get the treatment that you need.

Rachel