galatea Posted December 9, 2013 Report Share Posted December 9, 2013 My POTS doctor is considering putting me on octreotide, but from what I’ve read it’s used for people who have a lot of gut pooling/ feeling terrible after meals. I only have this a bit, and have mostly managed this by having small frequent meals. Does anyone know anything about the long-term effects of this drug? I really don’t know whether to consider it as it seems so invasive and powerful but works so well for some people!Also, the doctor says I should just carry on with the florinef and midodrine despite no benefits after 7 months, he hasn’t given me any reason and he never answers my questions when I email him, can anyone thing of any reason to carry on taking them? I’m considering just coming off them slowly despite what he says. Quote Link to comment Share on other sites More sharing options...
corina Posted December 10, 2013 Report Share Posted December 10, 2013 Hi Galatea! I'm on octreotide too. Though didn't feel specificly bad after eating I did have a lot of abdominal pooling. Octreotide has been of great help to me. Unfortunately after having surgery in July I'm heading back again despite of the injections.Octreotide has a long list of possible side effects, one of them is gall stones. I have been developing them and they are growing which is an issue. As I'm getting worse after surgery (not sure what causes it the surgery in itself or the aenesthesia/epidural) removing the gallbladder will only be an option when it's acute and serious.All in all I decided that trying this med was worth the riscs for me and I had 3 years of doing reasonably well (well for me being homebound and bedbound at times, I felt I did extremely well). I wasn't "cured" but could go on my dream trip to the US, even meeting up with some of my POTSpals!!! You might want to read through the list of possible side effects and decide whether you find it worth the riscs. I'm sorry your doctor doesn't seem to communicate well. Maybe let him know of your concerns both on this med and the others you are on and specificly ask him to answer your questions when you see him? Quote Link to comment Share on other sites More sharing options...
galatea Posted December 10, 2013 Author Report Share Posted December 10, 2013 Hi Corina,Interesting to hear what you say, how long have you been on it for? Sorry to hear about your gallstones, but it’s good to hear that overall it was worth it for you.Unfortunately I only get to see my doctor once a year, but I suppose if I have the octreotide trial I’ll have to see him then (hopefully!) Quote Link to comment Share on other sites More sharing options...
corina Posted December 10, 2013 Report Share Posted December 10, 2013 Galatea I've been on it for just over 3 years. If it weren't for the surgery I would still be a very happy camper so to speak! I started off with the subcutaneos version and injected myself 3 times per day which was a piece of cake (though the stuff is a bit painful). I now am on 3-weekly injections (LAR, not painful at all except for a little bump in the muscle that causes a little pain for one or two days) and add a subcutaneous one now and then when I really need to (want to) be on my feet. Though my doctor is close we do telephone consultations quite often to keep things simple. I hope that IF you decide to give it a try it will work wonders for you! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 12, 2013 Report Share Posted December 12, 2013 What other medicines have you tried? I can see how you would have a lot of questions before going on a drug like this and if your dr isn't available to answer them, maybe it makes sense to get a 2nd opinion. Quote Link to comment Share on other sites More sharing options...
galatea Posted December 13, 2013 Author Report Share Posted December 13, 2013 Yogini, I haven’t tried any other medicines apart from midodrine and fludrocortisone. I have seen a cardiologist more locally but he didn’t seem to know anything about pots, so I really only rely on the person I see once a year in London. Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted December 14, 2013 Report Share Posted December 14, 2013 My neurologist (Prof Mathias) has suggested Octreotide, as I cannot tolerate medications that worsen Raynaud's phenomenon, and have terrible flushing and it may well be the only POTS medication I can tolerate in the end. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 28, 2013 Report Share Posted December 28, 2013 my main comment would be that how do you know you dont pool in the stomach much? The largest veinous capitance beds are in the stomach and pelvis. Some POTS dont actually have pooling by the way - well at least there is a thought that increased microvascular filtration moves plasma out of the veins and into surrounding tissue.Ive heard octreotide can be helpful for some. Quote Link to comment Share on other sites More sharing options...
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