Topic: anyone experience with octeriotide for POTS?
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
We saw pediatric cardiologist, who specializes in POTS yesterday. Hehas recommended to us a choice of treating my daughter's POTS with Octeriotide injections 200 micrograms daily. This would be temporary as she had improved on Florinef and Proamatine..
But this last month she is having trouble with severe mood swings and getting out of bed. He feels that her immune system is down after 2 months of various virus' going around and break from abx.
We will see LLMD about restarting abx.
The mood swings are due in large part to the POTS as her cardiac tests show dramatically worsened "numbers".
The dr also gave choice of herbal treatment-licorice something or waiting a month.
Mood problem is severe and worsening so action is needed as I cannot leave her alone.
We are restarting counseling this week.
She is for the injections as she is so miserable with not getting out or feeling like she has to lie down suddenly when she is out.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
anyone?
Posts: 1230 | From US | Registered: Nov 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Char,
I am sorry I don't know anything about this....yet.
Sending prayers for you and your daughter.
Up for some information please.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
We have done 10 days of these injections, along with proamatine and florinef; which she has been taking for 5months.
Has started a job 10 hrs a week. Very tired, but managing and happy to be able to handle standing for 3-4 hours. Suffering from the deconditioning, but can already tell muscles are getting stronger.
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