RichGotsPots Posted April 24, 2012 Report Share Posted April 24, 2012 From what I've read its a wonderful medicine, but I haven't seen an actual poll yet.Also I would like to try it, I've been it improving breathing problems related to POTS, does anyone have that experience? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 24, 2012 Author Report Share Posted April 24, 2012 one mistake on my poll, if you never took it and still want to take the poll just answer No 1 for the last question like I did Quote Link to comment Share on other sites More sharing options...
corina Posted April 24, 2012 Report Share Posted April 24, 2012 Rich, I voted Octreotide being my best working med. What I'd like to add is that I found the subcutane (short lived) working better (sharper) than the LAR. But the LAR for me is better as I can get out of bed in the morning without my hr shooting up to about 200 bpm. I haven't had much testing but I worked really hard to convince my neuro to try it and with succes. I'm not magically cured, there still are issues but overall I am much better.I don't have the breathing issues you have and I think mine are more related to hr on exercizing (hr seems to get back quite slowly) so I can't say any encouraging words on that one!Oh and I haven't had much (autonomic) testing, I (now) know I pool in the stomach and legs and I think I have hypovolemia. Would like to be tested for that! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 26, 2012 Author Report Share Posted April 26, 2012 Jen, what kind of bad reaction did you have? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 14, 2012 Author Report Share Posted May 14, 2012 It's hard to believe that so little on here have tried this. I asked my pots specialist, who said he sees 80+ pots patients a year and he has never tried using it... Wish I could try it...I wonder, for the people it's helped does an abdominal binder help as well. They cause pressure in my chest to be worse.. Quote Link to comment Share on other sites More sharing options...
corina Posted May 14, 2012 Report Share Posted May 14, 2012 I had n abdominal binder which worked for me. Made me able to stay seated longer. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted June 15, 2012 Report Share Posted June 15, 2012 Does this medicine work better if you have a certain type of POTS. I just saw a study on it and did a search on Dinet forum and it does not seem like a lot of people are taking this. Also I heard it is expensive. Does insurance cover it in the US anyone? Are their a lot of side effects? I don't think I would take it now as just trying to stay at work and not rock the boat, but maybe later, and would like to learn more. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted June 15, 2012 Report Share Posted June 15, 2012 Worked like a miracle for me! During my worst flares it pulled me out of the pothole. The short acting works the best for me.I begain in 2001 when I began to go to WVUH under the care of Dr. Hoeldtke, one of the pioneers in the use of octreotide for POTS. I had to stop the long acting because it raised my bp too high. During one test after 3 months on octreotide, it enable me to stand for close to 60 minutes.Now, I only use octreotide when I feel crummy.During the inital few weeks on octreotide it gave me cramps and diahhrea--a small price to pay for enabling me to stand and to function normally.My insurance (BCBS FEP) does cover it under its special drug coverage. It is very expensive. You give the shots yourself. No big deal.The one big side effect it can have and did have with me was it caused gall bladder sludge which necessitabed me having my gall bladder removed. After I had made gall bladder removed, I stopped octreotide long acting and switched to eopogen.At that point we pointed to Florida and I switched to Mayo Clinic JAX. There, the oncology department would not give me epogen given the stroke risk. They said they rarely use drugs like epogen anymore even in chemotherapy patients (except those with metaastasis) given the increased stroke risk. They were highly supportive of me going back on octreotive where they felt very comfortable using it.The short-acting version is just that. It only lasts a short time. There is a generic verion of Sandostatin though it tends to be in short supply. Therefore my doctor has written the script for non-generic only so that I can get my supply quickly. I use the mail order program so the cost is not prohibitive.For me, it makes a huge difference when I can barely get out of bed.I urge people to try it if only on a trial basis. It beats being home-bound. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted June 17, 2012 Report Share Posted June 17, 2012 goldicedance1 Thank you for all the info! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 18, 2012 Author Report Share Posted June 18, 2012 Potluck I have the same question if this med works for a certain type of pots? It seems like it work best on people who pool blood the most. I wish we had a definitive test for this... Quote Link to comment Share on other sites More sharing options...
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