tinksinflight Posted August 9, 2004 Report Share Posted August 9, 2004 Greetings All,Once again I've come to the conclusion that this is nothing other than a long and awful roller coaster ride that may never end..I had went to see Dr. Abdallah on Friday...He was so concerned with the fact that I have been non responsive to all of the medications that he has tried and says that he has exhausted his methods ...within his knowledge..And is sending me to see a Dr. Robert Hoedtke?not sue about spelling due to Dr. A.'s handwriting..Anyway, He is in Morgantown Wv. Only about 3 hours from here and has much more research knowledge ...He has been treating POTS with this injection that I know nothing about, BUT....Dr. A feels as though I would benefit from...Speaking of the Sandostatin/Octreotide...Anyone with any information PLEASE....PLEASE....HELP.. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted August 13, 2004 Report Share Posted August 13, 2004 Here is the little bit of info we have regarding octreotide on our website:Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. This drug helps to prevent postprandial hypotension (low blood pressure after meals). We'll be adding some more infomration about this drug soon. Has anyone else here been on it?Michelle Quote Link to comment Share on other sites More sharing options...
pamyla Posted August 13, 2004 Report Share Posted August 13, 2004 Hi, you may want to try posting this on the Virginia forum. I've talked to someone who was taking that, but I'm not sure how often she checks the forum.hth, Pam Quote Link to comment Share on other sites More sharing options...
ethansmom Posted August 13, 2004 Report Share Posted August 13, 2004 Pam- I called you this morning but I forgot you went to your appointment with Dr. H! Let me know how it went...we are getting ready to brave the hurricane but I will talk to you within a few days. You should definitely contact "goldicedance"- she has been seeing this doc for a while and has had some success with octreotide injections.Hope all is well Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 14, 2004 Report Share Posted August 14, 2004 Hi, this is Goldicedance reporting on octreotide! I have been taking octreotide since December, through the expert care and service of Dr. Hoeldtke. It has made quite a big difference in my life. As my internist has said, she hasn't seen me look as well for a number of years. The biggest problem with octreotide is its cost. The monthly injection I am on and so is Denabob is roughly $2,500 a month, supplemented by short acting octreotide. Fortunately, my health insurance covers it; otherwise, being a mere mortal, I don't think we would have been able to pay out of pocket. I travel about 200 miles each way for my trips to West Virginia University Hospital. The first few months were pretty brutal as I had to stay there for a few days at a time to monitor my reaction to octreotide.Good luck! Let us know how it goes. I hope you don't have to wait a long time for an appointment. Please feel free to contact me for a more personal read on octreotide. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 14, 2004 Report Share Posted August 14, 2004 Sorry about the angry face. My finger went beserk. It should have been a happy face! Quote Link to comment Share on other sites More sharing options...
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