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Octreotide Injections For Paf. Has Anyone Tried This?


karenw
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Hi there!

I'm new to all this, but here goes.

I've just joined this forum and have been really interested to read other people's accounts, as up until now, I've never met anyone else in a similar situation. It's nice to know there are others out there.

I was diagnosed as having Pure Autonomic Failure about 10 years ago and at present I am taking midodrene, ephedrine and fludrocortisone. My symptoms (mainly dizziness and trouble getting my breath after both food and excercise, heat intolerance, tiredness) have been getting worse, and my consultant has now suggested taking octreotide 3 times a day in the form of self-administered subcutaeneous injections. I am something of a needle-phobe, but if it improves my quality of life, I am prepared to give it a shot (excuse the pun!) I just wondered if any else is taking this medication, and what are their thoughts?

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I am not taking this medicine and don't believe I have even heard of it, but I wanted to give you a welcome and wish you luck. I hope you find someone who can help you. And as far as needles...I found that as soon as I started to need regular IV's, my fear of needles went away pretty quickly. Granted, I don't have to stick them in myself, but hopefully you'll find the same goes for you.

Meg

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I was told not to take it. I have POTS not PAF. My endocrinologist read an article about it, but because I have digestive issues, she didn't want to do anything that would further increase my gastic motility. But, I hope that if you do try it, it'll work for you. There's a current study in New York about using it for POTS.

Sara

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I am not taking this medicine and don't believe I have even heard of it, but I wanted to give you a welcome and wish you luck. I hope you find someone who can help you. And as far as needles...I found that as soon as I started to need regular IV's, my fear of needles went away pretty quickly. Granted, I don't have to stick them in myself, but hopefully you'll find the same goes for you.

Meg

Thanks for your welcome Meg.

Since posting this, Someone has suggested hypnotherapy, so I'm going to give that a go.

Karen

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I was told not to take it. I have POTS not PAF. My endocrinologist read an article about it, but because I have digestive issues, she didn't want to do anything that would further increase my gastic motility. But, I hope that if you do try it, it'll work for you. There's a current study in New York about using it for POTS.

Sara

Dear Sara,

Thanks for your input. My problem occurs when I eat food, when too much blood goes to my stomach and it makes me feel very faint. I think my gastric motility is sluggish, so perhaps that's why I've been prescribed it. Since posting this, someone has suggested hypnotherapy to help with the needle thing. If I manage to take this medication, I will post how I get on, as it might be of interest to other people with PAF.

Karen.

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I used octreotide for POTS for several months.I had great response except for the following: I developed sludge in my gall bladder which my have been caused by the octreotide plus I developed very high blood pressure. In some people, octreotide can cause diahhrea. I can't remember my dosage. By the end, I was taking a slow release that lasted a month.

It is an extremely expensive drug.

The injections are painless.

I would give it a try. You can always stop it!

Any questions please let me know.

Lois

PS I was travelling about 4 hours a visit to see Dr. Hoeldtke at University of West Virginia. I believe he was one of the first to pioneer the use of that drug. You can google on Robert Hoeltke and find out more information.

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  • 2 weeks later...

Hi Karen - We have so much in common. My name is also Karen, I have PAF and am using the most of the same medications as you. I've been taking midodrine and florenef for a while and just started with the octreotide injections twice a day. The medications do help, but I think I need more, maybe a higher dosage. I've been taking 50 mcg twice per day and it seems like it only lasts for 2-3 hours. What dosage are you taking, and does it help?

I recently posted this subject on another web page because I had trouble with the injections. I'm now able to give myself the shots, but it took a couple of weeks to do it myself.

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