Advocacy and Updates

Georgetown

Hello everyone!

I have returned from a conference at Georgetown U. regarding the Loperamide issue. It was an incredible experience to discuss the issue and review current research with some of the top brains from around the country including representatives from poison control centers, gastroenterologists, substance abuse centers, drug manufacturers, non-profits, and government entities. I will report more on our discussions in a future update, but I wanted to take a moment to clear up something that has become a bit of a concern.

Nobody wants to take loperamide away from those who need it and are using it safely. I don’t know why, but I’ve been getting a lot of mail on this in the last couple of weeks. For those suffering from IBS, colonectomies, and other intestinal issues, let me reassure you — NOBODY recommends removal of loperamide from the shelves so that patients cannot get what they legitimately need. If you are having problems acquiring the medication, that has nothing to do with me or my advocacy efforts. Stores in my area are still selling bottles of up to 200 pills and you can still get them from Amazon.

The official FDA recommendation (seen here) requests that manufacturers and resellers restrict sales of bundled packages of loperamide which are often targeted and marketed toward those misusing or abusing the drug.

So what does this mean for you? If you are used to buying 1600 tablets at a time, yes, you will experience some inconvenience.

That said, if you are taking more than the recommended dose, outside of a physician’s supervision, you should be concerned. It has been shown that taking loperamide in large enough doses over a long enough period of time will result in cardiac arrhythmias and/or death. If you are taking high doses and have been doing so for a long period of time (misuse, as opposed to abuse), this should concern you.

The fact is, we do not know what that “high enough” dose is, nor can we quantify how long you have to be taking that dose to achieve cardiotoxicity. We are researching how that happens and why — and while there are theories, nobody has a definitive answer — yet.

So please — I understand those of you who are concerned that your access to this drug could be limited. I fully respect that. It is a very important part of the discussion and should not be overlooked. After all, the World Health Organization considers loperamide one of their top essential medicines. But, if this drug isn’t as safe as you thought it was, why are there no alternatives? Advocate for an alternative. Demand one.

It’s out there — we just need to fund it, research it, and find it.

In the meantime, we have loperamide. I assure you, NO ONE benefits from taking it away.

But me? I am advocating for the rights of those who have become addicted to loperamide (and other opioids) and trying to spread the word to educate physicians and medical professionals as well as the addict population that loperamide is being abused and misused. It is NOT a safe alternative to a traditional opioid. It is not a “Poor-man’s methadone”. It is a deadly substitute that needs to be respected for what it is — it is an opioid.

It is part of the opioid crisis, whether we like it or not. I will continue to be a voice for all those affected by loperamide — particularly for those who have come to misuse and abuse it and fear social retribution or stigmatization.

I have hundreds of letters from addicts and their families who know the bad that this drug can do. I know first hand as well. And if I can get better, other addicts can too.

I offer here my experience, strength, and hope for all those seeking help.

Good night, and good health.

MM


“The meaning of life is to find your gift. The purpose of life is to give it away.” —William Shakespeare


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About madmargaret

Nursing student, Mac nerd, medical 'genius', recovering addict, singer, ex-actor, and all-around swell egg. Really!
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