Jules Posted February 13, 2012 Report Share Posted February 13, 2012 On the "What Helps" section of this site, Octreotide is listed under Vasoconstrictors. Has anyone tried this medication? Did it help you? Did it help with Exercise Intolerance? Section copied below.********* Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007).Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day (Grubb, Kanjwal & Kosinski, 2006). A long-acting injectable form has also been developed. Quote Link to comment Share on other sites More sharing options...
corina Posted February 13, 2012 Report Share Posted February 13, 2012 jules, i've been on octreotide for over a year now. i started off with the subcutaneous version (20mg 3 to 4 times daily) and noticed it worked within two minutes. my vision imroved, pooling got much better and overall i got much better. after about 6 weeks i changed to the LAR, which is less "sharp" in its effects but better as it works 24/7. the subcutaneous stopped working in about 4 hours.once on the LAR(20mg every 3 weeks) i started rehab and learned that i now could recuperate where i couldn't before. i learned walking again, biking and swimming. i got tired from exercizing but my body could rest and be ready for more, this is something that wasn't possible earlier on. so for me octreotide is the best med i've been on so far. i do need an ssri with it to keep my hr down, but these two together work best for me. i'm not magically cured and still have issues but i got my life back. not the life i had but a life i'm very happy to live and which gives me much more opportunities than i had before (i was in an electric wheelchair and mostly home (and very often bed) bound.i now am able to go walking, i swim every week at rehab and try to do some biking. and i love my life!hope this helps,corina Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 13, 2012 Report Share Posted February 13, 2012 I'm getting it delivered TOMORROW! I'm not looking forward to the GI side effects (really bad cramps and diarrhea), especially when it's first started. My cardiologist prescribed 200mcg twice a day. I'm probably going to start at 50mcg just until I can get over the initial side effects.I do have a continuous level of symptoms (fatigue, nausea, abd pain, headache, flushing, etc), but they are definitely worsened with meals. I'm hoping the octreotide will help. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 13, 2012 Report Share Posted February 13, 2012 corina... that is great news that it has worked so well for you. My doctor is Dr Hoeldtke who did that research in the 90s.I want to start that exact same rehab you described, only using Saline IVs for for recovery and building endurance. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 14, 2012 Report Share Posted February 14, 2012 octreotide works well for me. side effects were of benefit--stopped chronic diahhrea. cramping goes away. If you have problem with constipation, I don't know about octreotide. Its alternative usage is to help stop intractable diahhrea -- oncologists sometimes refer to it as cement. Also, it is known to cause gall bladder sludge or stones. I had to have my gall bladder removed as a result. However, octreotide did give me the ability to stand and maintain my blood pressure.I use octreotide during bad spells. Quote Link to comment Share on other sites More sharing options...
corina Posted February 14, 2012 Report Share Posted February 14, 2012 mc blonde, if ever you have the opportunity would you thank your doctor from me? i'm just so thankful that doctors work on options for us! hope rehab works out very well for you!!!janie, i'm keeping my fingers crossed for you! Quote Link to comment Share on other sites More sharing options...
Jules Posted February 17, 2012 Author Report Share Posted February 17, 2012 Did any of your insurance companies give you problems with this medication? My old doc said that it's really expensive and insurance might not cover it since it's an off-label use. I am going to see Dr. Arden in Oregon, who is a cardiologist, so it will be interesting to find out her thoughts on this medication. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 17, 2012 Report Share Posted February 17, 2012 I have ODS and it did require a prior authorization, but they did approve it. You're right that it IS expensive. I get it through a specialty pharmacy that ODS contracts with. It's FedEx'd to my house monthly and I have to be home to sign for it, since the octreotide has to be kept cold and they can't just leave it on my porch. Quote Link to comment Share on other sites More sharing options...
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