Octreotide

[MomtoGiuliana]

Is anyone on this forum using this and getting good results? I know one member who is. I am trying to do a little research for another past forum member who is still quite unwell. Thanks!

[corina]

katherine, i have a research article on octreotide in autonomic neuropathy and pots, i can email it if you like. together with an ssri they are my "miracle" meds. not cured but so much better that i finally have a life again. let me know if you're interested. that goes for everyone of course

corina

[MomtoGiuliana]

Thanks corina--that would be great if you could send this to me.

[MightyMouse]

I know two others who are using it with good results as well; however, they are both in the UK.

[doggus]

Do you know if you can take if it if you have MCAD as well - does it increase histamine?

[sugartwin]

Corina, I'd like to read it as well. I tried to get my doctor to prescribe it with no success, alas.

[ashleighheath]

I am currently using Octreotide as a method to increase my physical therapy/physical activities. And with gradual success, thus far. I also used it with great success to previously rehabilitate myself during a much less severe episode of POTS several years ago when I was younger and more generally healthy (also in combination with physical therapy and physical exercise.) My current relapse is more severe. Probably due to a combination of age/more deconditioning. (Thus, my efforts to recondition myself w/ the aid of Octreotide.)

When first beginning Octreotide therapy, there is sometimes some mild-moderate GI discomfort, but in my experience it passes as you continue the use and build up tolerance. And each episode is generally short-lived and is on par with general POTS GI symptoms. So it's worth it to get through the initial phase to gain the payoff. (It seems if you bring the medication to room temp when you first beginning using it, it seems to help with this. And also, start with small doses and build up.)

Also, you should probably monitor your blood sugar, b/c levels can become elevated (esp. in those individuals w/o a gall bladder), but even w/ elevated blood sugar levels, they can still be considered in the safe range. And the overall benefit to the POTS improvement is worth it.

From my perspective, Octreotide is probably best used as a "short-term" solution to rehabilitation and for managing more difficult challenging situations b/c of the potential adverse side effects. But it can be a very powerful tool. Physicians, even POTS specialists, seem to be generally cautious against using it. I ended up having my GI doctor push for its approval w/ my insurance and it was approved. And fortunately he has been very open to me "experimenting with it" and using it at my own pace.

[ramakentesh]

I dont necessarily accept that POTS can be caused by deconditioning.

Octreotide is one of the best medications available for POTS. Since many POTS patients have splanchnic/stomach blood pooling, it definately helps this. But it is very expensive and the long acting is generally required.

[corina]

the reason for my doc to prescribe it was that nothing else seemed to really help (or i couldn't tolerate), he was quite reluctant as it can have some serious side effects. you always need to weigh the pro's and con's. i started off with the subcutane injections every four hours which i injected myself. they are quite painful, warming the suspense reliefs the pain. after about 3 months (which is quite long) i started the LAR. i was disappointed at first as the lar doesn't work as sharp as the subcutane. it took about 4 months to get where i was.

i'm monitored for gallbladder issues and have bloodtests every so many weeks (forgot how many ). i had a bad reaction at first where my liver got affected but over time that got better. my doc (who is a researcher) wants to know why it isn't prescribed more often which makes him even more reluctant. he has had a few conferences lately so i hope he got answers! he is very happy to see me improve so dramatically and we work quite well together, which is a huge bonus!!!

[ashleighheath]

I'm so glad that you've had success with it, too, Dani!

ramkentesh, While I agree that POTS may not be "caused" by deconditioning, I do believe (based on personal experience) that symptoms can be better managed by better conditioning. Perhaps I could have phrased my explanation better. Of course, this much easier said than done when you are balancing POTS symptoms and dealing with exercise intolerance and attempting to recondition a most-likely (an increasingly) deconditioned body. It certainly helps w/ GI symptoms but is a fantastic way to overcome hurdles for general vasoconstriction issues.

I've only used the subcutane. Yes, it is very expensive ($10,000 month for the full prescription for dosing all day on a subcu); however, it is available in a generic form and depending on your insurance, it can be available as a generic copay (i.e. $10/month.) My current physician (GI) is consulting w/ Blair Grubb on my management and previously my physician that introduced me to Octreotide was a physician (Robert Hoeldtke) that researched and published articles on Octreotide. He had attempted to get funding to research the potential for POTS therapy but was unsuccessful (this was about 10 years ago). We ended up just using it privately. Yes, it's expensive but well worth it.

Dr. Hoeldtke believed that if it was proven as a broader therapy then the production would increase and the price would go down (which is a basic economic principle).

[kjd111]

Hi. I haven't been on the boards in a while, but my daughter has been using Octreotide for about 10 months now and it has been wonderful. She has orthostatic hypotension caused by some sort of leaky capillaries/blood vessels. She also fits the description for Pots, but it is more likely driven by the blood pressure drops than POTS on its own. This was the best medicine for keeping the fluid in her bloodstream where it belongs. She takes it in the morning and at night before eating. She actually has a prescription to take it 3 times a day, but we found the dose too high and it was just too frequent. She also had some GI upset for a couple of weeks. It really helps keep her blood pressure up after eating, which was a major issue for her too, and the Octreotide in combination with midodrine, florinef and dextroamphetamine has given her some of her life back.

She was a competitive figure skater and while she can't do that anymore (and is very sad about it), she swims some, does some working out to try to stay conditioned, and is in school full time and in AP classes. I would say that for her, while the other meds helped, the Octreotide was the best.

[ramakentesh]

Octreotide has been examined and used extensively in POTS - I think by Stewart and Medows, since this research group was the first to describe specific increased splanchnic blood flow in a subset of POTS patients. It is an expensive medication and most doctors only use it in treatment-resistant cases.

I agree that deconditioning can contribute to POTS. I currently exercise to the point where I run 5kms three times a week - at one stage I was doing it daily. It undoubtedly helps in my case.

[E246]

Hi Ramakentesh,

How do you run with POTS? Are you in remission? What happens with your heart rate?

I ask because i swam before the pots - even in my 50's i could manage half an hour in the fast lane but my doctor tol me to only do single lengths and not let my heart go over 120.

I have hyper pots and exertion gives me chest pain and sometimes jumps in hr.

Well done- it's great to hear you're keeping healthy.