Disulfiram (Antabuse) Update: Peripheral Neuropathy

Bad news:  I have to discontinue antabuse treatment.  I’m writing about it on the blog just in case it may be helpful to some worried person googling their side effects on the internet.  I’ve also posted my experience on two of the big drug review websites.

I took 250 mg antabuse for 99 days.  The only side effects were mild headache and a bad metallic taste in my mouth, both of which stopped after about two weeks as my body adjusted to the medication.  Then it was smooth sailing until this week.  I fully intended to take this drug indefinitely as long as my liver stayed healthy.  I like it.  It works for me.  It provides me with a nice fluffy comforting security blanket.  I feel like I might as well be living in a world without ethyl alcohol.

Well, this week I noticed that my lower legs were feeling a somewhat numb below the shin and above my ankle.  I had no idea what it could be, as I’ve never experienced anything like it before.  I’d been writing at my computer for about five hours straight that day, so I figured that maybe it was a circulation issue (?) and I am already starting to get old and decrepit (?).  I went out to get some exercise.

It did not go away and sleeping on it didn’t help.  After a few days, I thought maybe it was something like my carpal tunnel syndrome, only in my legs.  But I’m not typing and using a mouse with my legs and feet, right?

I started researching more about the side effects of antabuse online.  Among the user reviews at webmd (read em and weep.  There but for the grace of God go I…), I found a review by a woman who started feeling numbness in her feet, which eventually spread up her limbs and through her body.  Her symptoms started approx. 90 days after beginning treatment.  Her physician diagnosed her with neuropathy from the antabuse.

Fuck my life.  I made an appointment with my doctor, and, yes, that’s what has happened to me.   Neuropathy is an uncommon but known side effect.   Most people don’t experience it, but I do, and it’s just my bad luck.  🙁 🙁 🙁 🙁 🙁   I’m sitting here now with this weird numb feeling on parts of my legs.  It’s been 6 days now.  It’s not terrible and I don’t even notice it unless I’m paying attention, but it’s there, all right.

I have to stop taking the pills immediately.  The good news is that I reported the symptoms very quickly and the doctor says the nerve damage will probably reverse itself.

I still have access to the medical literature through the university, so spent a few hours studying the research.  This is from an abstract of an article that’s not behind a paywall:

“Disulfiram (Antabuse) can produce neuropathy in daily doses of less than the usually recommended 500 mg. The four recent cases reported in this paper emphasize the need for greater recognition of this condition. Nerve biopsies showed axonal degeneration…Disulfiram neuropathy occurs after a variable latent period (mean 5 to 6 months) and progresses steadily. Slow improvement may occur when the drug’s use is stopped; often there is complete recovery eventually.” *

Neuropathy is serious shit.  If you’re on antabuse and you experience numbness or pins and needles in your legs or hands, get it checked out right away.  Don’t wait.  Some of these poor cases in the articles didn’t seek medical attention until the symptoms were crippling them.

Now what…?  I guess I’ll try Naltrexone.  It’s a completely different type of medication.  The counselor running the therapy classes I attend reports very high patient satisfaction rates.  A pharmacist I know also recommends it.

If anyone reading this has any experience with it, one way or another, please leave a comment or send me an email: piecesofmargo@gmail.com

 

* Watson C.P., Ashby P., and Bilbao J.M. (1980)  “Disulfiram Neuropathy” Canadian Medical Association Journal  Jul 19; 123(2): 123-126


11 thoughts on “Disulfiram (Antabuse) Update: Peripheral Neuropathy”

    1. It’s not a setback, but it is a frustrating disappointment. I feel really good about not drinking (I’m terrified of relapsing, actually), but the antabuse was great for that feeling of security. I wish the doctor could somehow trick me with placebos.

      I will try the naltrexone. It’s a completely different mechanism, but if most of the benefit of taking a medication is the mind trick for me, then I might have success with it.

    1. Hi!

      As I understand it, naltrexone does two things: it reduces cravings for alcohol and also changes the perception of the “drunk” feeling when you drink, especially the relaxed cheerful feeling in the beginning–the buzz, I guess. So you can drink, but not get drunk. You still get intoxicated and hung over, though, because your body still has to metabolize the booze. I’ve talked to two people in my group who report drinking on naltrexone and they both say that the experience is unsatisfying because the alcohol doesn’t “work.”

      The doctor said that naltrexone is dangerous for some patients because they keep drinking, determined to get drunk, and end up with alcohol poisoning and have to go to the hospital. Those are probably the type of people who insist on drinking on antabuse. I am fucked up, but not that variety of fucked up, so that is not something I am worried about doing.

      That’s what I know at this point. I’ll definitely write about the drug if I take it.

      1. That’s interesting. See, the only context I’ve ever run into naltrexone before is as a) a life saving med for opiate overdoses–it’s the primary ingredient in Narcan packs for users who are saving peers who overdose, and it’s what the hospital will give one if one’s treated for it there and b) as an ingredient in suboxone, whose other ingredient is buprenorphine, a synthetic long-acting opiate used for opiate substitution treatment (like methadone.) So the idea I got is that naltrexone works by unbinding short acting opiates from your receptors, either making the experience not “work,” or in larger doses, sending the user into withdrawal. So I wonder how it makes alcohol not “work” similarly. I didn’t even know it was used for alcoholism before.
        I’ve got to say Antabuse is sorta scary sounding to me, but that’s b/c I used to hear a lot of horror stories about it from my Russian immigrant parents–in the Soviet Union doctors used to give ppl Antabuse implants under their SKIN, and often that’d lead to them overdosing and dying on it somehow? Either by drinking or having the implant burst? I dunno, urban horror stories. Still, I have to say I’m reassured you’re not taking it anymore–that neuropathy side effect sounded terrifying, and I’m glad you caught it in time. Wishing you a speedy recovery from the nerve damage and I hope naltrexone works well for you.

  1. Sorry to hear about your side effects problem. I hope your legs feel better soon.
    It sucks having to give up the antabuse.
    [Insert short AA pep talk here]

  2. Hello. my name is matthew. I write from Italy. I assumed antabuse 400mg from August of last year to April this year. of course I developed nueropatia by disulfiram. the electromyography showed an axonal damage to the nerves of the legs with process deminielizzazione. how lucky !!! immediately suspended antabuse and started treatment with nicetile, and seems to get better

    1. Hi Matteo!

      I’m sorry you developed neuropathy, too! It’s serious! I hope the nerves in your legs are healing. My symptoms are about 60% improved.

      Do you like the nicetile (naltrexone)? I like it so far. It does help with cravings to drink. It also is a mild appetite suppressant, which is fine with me!

      Best wishes for your sobriety, Matteo. Stay strong!

  3. In researching how to reduce the effects of my Disulfiram Reaction (I am that fucked up – thought taking a couple shots after ceasing Antabuse treatment for a couple of days would be OK), I came across this blog and other articles on disulfiram neuropathy. I also had leg pain and numbness after I stopped drinking and raking Antabuse and thought that it was just a result of my past drinking – alcoholic neuropathy. Now it appears I will also have to stop taking Antabuse permanently.
    How is the new medication working out for you?

    1. Hi, I’m so sorry it’s taken me so long to respond.

      Antabuse neuropathy is serious. If Anabuse is causing you neuropathy, you have to quit it, or you’ll eventually end up in a wheelchair. This is all documented in the medical literature. Booze causes neuropathy too, as you know, but it’s not the same–Disulfiram Reaction is unmistakable. My own was a textbook case.

      I highly, highly recommend Naltrexone. http://www.webmd.com/drugs/drugreview-7399-naltrexone+oral.aspx?drugid=7399&drugname=naltrexone+oral

      Half of users have no side effects whatsoever. I had every one, and it made me throw up and feel jittery for a week until my body adjusted. I will not lie to you, I have insomnia, it was bad. However, once my body adjusted…it was a miracle. I now have zero side effects. A week of bad side effects (which are nothing compared to DTs) is nothing.

      You need to understand that Naltrexone changes your brain. It’s an opined antagonist, but it woks even better for alcoholics than for opoid addicts. All the craving receptors in your brain are shut down. Read the reviews on Web MD. I don’t crave booze anymore. I can go to a restaurant and order dinner to go at the bar and not feel stressed out looking at all the bottles. This drug is a miracle for me.

      Alcoholism is genetic and it kills. It’s as bad, or worse, than heroin.

      I’m not going to lecture you. I’m a serial relapser who just spent a week in the hospital for going off the Naltrexone and drinking.

      It steals your life, man. It’s genetic and if you have it, you have it. You have to fight it unless you want to die a horrible alcoholic death, and who wants that…?

      Try the Naltrexone. You might be one of the majority who experiences zero side effects. Even if you do, stick it out, and in a week, the side effects will be gone.

      Godspeed, cousin.

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