1. < Neuroendocrine Tumors (NETs)

Tincture of Opium for bowel issues with diarrhea

Posted by kathleenandbob @kathleenandbob, Oct 15, 2023

I have been able to get by day to day with my presciption for Tincture of Opium (Paragoric). This is the miracle drug, I have needed to special occasions outside my home away from my toilet.

I cannot get any longer in NJ or FL where I live the last 6 months.

Does anyone, anywhere know how I should further investigate getting this med. I am willing to order other countries, etc.

Thx. Kathleen

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2023

@kathleenandbob, opium tincture is an opioid medication used to treat diarrhea in adults. It's not approved by the FDA, since it's a very old medication that's been "grandfathered" in under the current law. This means it isn't required to go through the same approval process as new medications are today. It is a controlled medication, so there are special requirements to get a prescription filled. This may explain why it isn't widely available any longer.

Since this medication is only available by prescription, have you asked your prescribing doctor where it may be available? Or ask if there might be an equally effective medication to help with diarrhea?

REPLY
1 reply
plbyates | @plbyates | Oct 16, 2023

My husband has NET's and his oncologist put him on Xermelo. The med definitely helped with the diarrhea.

REPLY
kathleenandbob | @kathleenandbob | Oct 16, 2023

Thank you for your recommendation. Duriing the last 10yrs dealing with NET diarrhea, I have tried many meds with little result. I believe Xermelo has been prescribed, but will consider retrying. The tincture was a blessing because of speed of results and my security that I will not be caught off guard, K

REPLY
kathleenandbob | @kathleenandbob | Oct 16, 2023
In reply to @colleenyoung "@kathleenandbob, opium tincture is an opioid medication used to treat diarrhea in adults. It's not approved..." + (show)
@colleenyoung

@kathleenandbob, opium tincture is an opioid medication used to treat diarrhea in adults. It's not approved by the FDA, since it's a very old medication that's been "grandfathered" in under the current law. This means it isn't required to go through the same approval process as new medications are today. It is a controlled medication, so there are special requirements to get a prescription filled. This may explain why it isn't widely available any longer.

Since this medication is only available by prescription, have you asked your prescribing doctor where it may be available? Or ask if there might be an equally effective medication to help with diarrhea?

Jump to this post

I have been on the TX for many years. I am a healthcare provider myself, now retired. I had control substance prescriptive priviledges in my state and carried my DEA No.
Your response is appreciated and your response is right on. Thank you for taking the time to answer.
Yes, this is a rare disease. And yes, this is likely a drug rarely ordered. The doctors office has no idea who may still have supply. So I may start growing my own poppies! ha ha
I am very thankful to have had 10 yrs since diagnosis, so I need to adjust my attitude about diarrhea and pain..........a very hard task. K

REPLY
Please sign in or register to post a reply.