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Pots Article In The Uk's Daily Mail


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That's interesting! I had heard of ocreotide used for carcinoid and other neuroendocrine tumors, so couldn't imagine how it worked for a POTS person. So, I looked it up on Wikipedia:

http://en.wikipedia.org/wiki/Octreotide

Down under the off-label uses, it says it is used for idiopathic intracranial pressure. I find this funny that we were just talking on the other thread about high intracranial pressure and its possible contribution to POTS! BTW, I'm referring to the thread about "...ill.com"(can't remember anything else).

I wish they would have talked more as to WHY they thought it helped her specific case. I know it is used similar to midodrine, but I think it is important to know the "why".

Wow, I'm glad she is now able to get on with some fun in her life!

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one of our (UK) members, persephone started octreotide about a year ago (or maybe more, can't remember exactly)and had great succes with it. she made me aware of that and helped me by sending articles on it. i started working on getting it prescribed and succeeded in ocotber 2010. since then my life has changed dramatically. it helps with every symptom of my pots though not with my memory loss. i have been at rehab for the last 3 months and managed to walk on my own, bicycle (even bought a new bike recently) and have started to work on stamina.

i had tried rehab 3 years ago when i was stuck in my wheelchair and came no further than walking for about 3 minutes (started at 40 seconds) so after almost a year they gave up on me (which i could fully understand). before october last year i was in bed most of the time. i can't exactly say how it works (maybe i forgot, not sure :unsure: ) but being able to live the life i do know is more than i could ever have dreamt. i'm not cured, don't get me wrong, when i'm not on octreotide i fall back to where i was. but i'm thankdul for every minute i'm able to live this new life. if anyone wants to receive the articles i have, please let me know and i'll be happy to email them!

take care,

corina :)

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They discussed trying octreotide on my son but after running the antoduodenal(sp) test on him, they decided this drug would not help him. He was having many gastro issues(nausea). I'm kind of glad that was not on option since it is an injectible medication.

Christy

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I would like to know what qualifies one POTS patient for this med vs another. Corina - what else do you know about it? Clearly the young woman in the article was bed & wheel chair bound for quite some time. It's pretty exciting that she has found a new lease on life!!

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Corina,

That's wonderful! It's great to hear the difference it has made and how much better you are doing ! I have heard good things about this drug, when other more mainstream drugs aren't working. I haven't heard as much about its use in the US.

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as far as i know octreotide is (thusfar) used on patients who didn't find the "usual" meds working. there has been scientific research, published in 2007 (hoeldtke, bryner, hoeldtke and hobbs) where they determined wether autonomic neuropathy and pots could be treated with octreotide lar. i started off with the subcutane to see how it would affect me and was really and truly amazed that i could feel it work within about 1 or two minutes. first thing i noticed was that my vision suddenly got sharp and somehow i felt i could walk which was true. now i can imagine this sounds to good to be true but for me it really worked and still works. there have been some downs too when i noticed that the lar takes more time to settle in than the subcutane version which was a bit disappointing but after about 3 or 4 injections i felt as good as when on subcutane. the subcutane wears off in about 4 to 5 hours and brought me back to my "potsy" self again and is quite painful to inject (thick and sticky fluid, injected it 3 times a day) but for me it was so worth it being in bed a LOT, not having much of a social life anymore and hardly ever able to go out (not even in my electric wheelchair).

octreotide has been discussed here more often but i couldn't get much of it back while searching for it. what i found quite amazing was that it took away almost all of my symptoms, even the one that i felt quite ashamed about, the wetting myself. i felt like having diabetic insipidus (sp.?) and even that is gone. all this makes me think my pots is hormone related but of course i'm not sure about it. main thing to me is that i'm sooo much better and having my life back, eventhough it's on a different level than before!

corina :)

btw, i'm in the netherlands and think i'm the first one on it here. my neuro was very hesistant to prescribe it but i loaded him with the articles (well, not more than 3 :) ) and after about 4 or 5 months he gave in and prescribed it. i just HAD to give it a try

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corina that's so wonderful that it's made such a huge improvement in your quality of life. I love that you pushed until you got the treatment you felt you needed to try - and ended up being right!!

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