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Octreotide Poll


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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!

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  • 3 weeks later...

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..

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  • 1 month later...

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.

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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.

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