×
all 46 comments
sorted by:
best (suggested)
topnewcontroversialoldq&a

[–]shrillthrill 12 points13 points  (6 children)

There's a warning in the FAQ about it. Though, modafinil isn't the only drug that'll do it, even acetaminophen can trigger SJS:

http://www.fda.gov/Drugs/DrugSafety/ucm363041.htm

[–]GuruLand[S] 6 points7 points  (5 children)

Thank you! After coming from the hospital, SJS looks pretty serious to me.

It must be interesting to discuss how we could predict and prevent developing SJS on new modafinil users AND on occasional modafinil users that might consider taking it daily.

Could she have avoided developing it if she had stopped taking moda after she got the first skin symptoms? (Specially in the mouth 7-8th day).

Would have she developed it only by taking one pill? It was the repeated dosage that let it fully develop apparently? So if she had used it ocasionally like many of us, probably she wouldnt have developed it.

[–][deleted]  (2 children)

[deleted]

    [–]kabneenan 6 points7 points  (0 children)

    I'm not a doctor, but I read a little on SJS after my grandmother developed it following an antibiotic treatment. It is an immune response to the medication; basically the body's immune system reacts against a foreign body, like medication, and goes haywire.

    In my grandmother's case, she stopped treatment as soon as she developed blisters, but I don't think it mattered at that point. The immune response had already been triggered. She recovered, thankfully (especially given her age and other health problems), but it was looking pretty close for a while there.

    [–][deleted] 0 points1 point  (0 children)

    I'd be interested in seeing if something like Rei-Shi Mushroom would have an effect on it since it is an immunomodulator.

    [–]nicolaosq 1 point2 points  (0 children)

    What does the skin condition look like? Could you post a pic of the back of the Mod strip?

    [–]MISSINGxLINK 1 point2 points  (0 children)

    How is your friend? It has been a few months, did her SJS get progressively worse, or did they catch it in time?

    [–][deleted] 2 points3 points  (5 children)

    Wow that's awful. I don't think its possible to predict. Its quite rare though, only 300 cases per year in the US.

    [–]dnizetic851 1 point2 points  (4 children)

    300 cases caused by modafinil or by all substances?

    [–][deleted] 2 points3 points  (2 children)

    All substances

    [–]dnizetic851 1 point2 points  (1 child)

    Do you know how many of those 300 are caused by modafinil?

    [–][deleted] 1 point2 points  (0 children)

    No idea.

    [–]brokemac 4 points5 points  (0 children)

    How is she doing?

    [–]CrazinessDefined 1 point2 points  (17 children)

    So what are the chances of developing Steven-Johnson 's Syndrome by daily use of modafinil for let's say 5 months?

    [–]gwerngwern.net 2 points3 points  (14 children)

    Estimate how many people are taking modafinil; estimate how many people develop SJS for any cause; divide; that's your upper bound on the chances.

    [–]TurielD 0 points1 point  (4 children)

    I was just looking through some info and came across this Longecity thread talking about how SJS seemed to occur most in people with a particular HLA serotype, because this caused a vulnerability to the sulfuric component of MOD.

    I know you're rather well equipped with research in this field, any chance you've looked at this theory before?

    [–]gwerngwern.net 1 point2 points  (3 children)

    It's kinda interesting, but it's not of any practical significance. I mean, suppose that serotype doubles risk, increases it by 100% (somewhat similar to the book quote) - and the risk goes from 1 in 4million person-years to 1 in 2million. Is that really enough to change anyone's decisions about modafinil?

    [–]808120 1 point2 points  (2 children)

    Woah? Are you from gwern.net?

    [–]gwerngwern.net 2 points3 points  (1 child)

    Yes.

    [–]GuruLand[S] 3 points4 points  (0 children)

    I have to congratulate you for your website. It is remarkable, not only the "supplements" parts, but the others, your thinking process, data analysis, writing skills and cleverness to put it all together is just remarkable, just remarkable.

    Thank you

    [–][deleted]  (8 children)

    [deleted]

      [–]gwerngwern.net 3 points4 points  (7 children)

      Further, could there be a difference between sources? I still don't entirely trust 'Indian pharmacies'.

      Modafinil is modafinil, it either causes SJS or it doesn't. What SJS-causing impurities or differences might there be in the Sun modafinil?

      [–]TurielD 1 point2 points  (6 children)

      I have no idea. What other chemicals does the indian plant produce?

      *EDIT: also R-modafinil has different pharmacokinetics and effects than S-modafinil. Could the ratio be different in this production method? Might that have an effect?

      [–][deleted] 2 points3 points  (0 children)

      I have no idea. What other chemicals does the indian plant produce?

      You know Sun Pharma is not a pair of guys with a chemistry set? I know India is notorious for bribery but when you are a pharm company of that size it would be hard to brush anything under the carpet.

      [–]gwerngwern.net 1 point2 points  (4 children)

      What other chemicals does the indian plant produce?

      I have no idea. But I don't see any thing to explain. Almost everyone linked to /r/Nootropics will be using Indian modafinil because it's the cheapest and easiest to get, while hardly anyone uses Cephalon/Tevawhatever modafinil; hence, if any of the thousands of users (or anyone associated with them) get SJS, it will be with Indian modafinil. We are seeing what we would expect to see.

      *EDIT: also R-modafinil has different pharmacokinetics and effects than S-modafinil. Could the ratio be different in this production method? Might that have an effect?

      Wouldn't this theory also predict either an extremely high or extremely low risk of SJS with armodafinil, since that is necessarily messing with the isomer ration much more? I have heard nothing about either outcome.

      [–]TurielD 0 points1 point  (3 children)

      Well that later point would interest me. The reports I've come across which deal with SJS, anecdotal or not, have concerned modafinil as opposed to armodafinil. As for extremely high or extremely low going from 0,000025 % to either 0,00005 or 0 would be hard to notice and just as easily attributed to statistical anomaly.

      But then, as you noted the numbers are so low as to be borderline meaningless in the risk/reward consideration.

      [–]gwerngwern.net 1 point2 points  (2 children)

      The reports I've come across which deal with SJS, anecdotal or not, have concerned modafinil as opposed to armodafinil.

      Armodafinil, in the form of Waklert (rather than ultra-expensive Nuvigil), only really became widely available quite recently. And I don't think the FDA would require many or long clinical trials for something they basically already approved in the form of modafinil.

      [–]TurielD 0 points1 point  (1 child)

      Well you'd think that but they denied approval as Sparlon which wasn't even armodafinil. They wanted a 3000 person clinical trial to show its safety, which Cephalon decided against in favour of showing dermatologist evidence to cast doubt on the single-case SJS-mod link.

      Then again, I understand there were some conflicts of interest there as at least one of the FDA board members had ties to the typical ADHD medication manufacturers.

      [–]gwerngwern.net 0 points1 point  (0 children)

      Well you'd think that but they denied approval as Sparlon which wasn't even armodafinil.

      Sure, but Sparlon was for a completely different problem (ADHD, not narcolepsy) and different population (children, not adults). Children can react very different from adults, and so requiring more evidence is reasonable. (Consider Tylenol.) With armodafinil, it was reapproving basically the same thing, for the same problem in the same population.

      [–]smt1 2 points3 points  (0 children)

      If you don't get it in the first week or two, you're body's immune system likely is okay with the drug.

      [–]Victawr -1 points0 points  (0 children)

      I'll go ahead and say pretty slim..

      [–][deleted]  (2 children)

      [deleted]

        [–]GuruLand[S] 1 point2 points  (1 child)

        Because she only developed a few mouth sores and rashes and didn't think it was because of modsfinil, we went to the doctor and he told her to use a prescription mouth rinse.

        On day 10, she coughed blood and had difficulty breathing. That's when she went to the hospital.

        From the wiki: "Stevens–Johnson syndrome (SJS) usually begins with fever, sore throat, and fatigue, which is commonly misdiagnosed and therefore treated with antibiotics"

        [–][deleted]  (1 child)

        [deleted]

          [–]shrillthrill[M] 2 points3 points  (0 children)

          can you substantiate this with evidence instead of making a baseless claim?

          [–][deleted] 0 points1 point  (0 children)

          Why didn't she stop taking it when she noticed those sores? I took modafinil daily for 4 months and had no issues, but in the first few weeks I was checking up on my body to see if there where any signs of side effects, if I had noticed sores I would have quit immediately

          [–]zakhmisher 0 points1 point  (0 children)

          I got a massive allergic reaction after taking the same brand of Modafinil.

          Modafinil works on the Histamine system.

          Did she ever take any other drugs/supplements in the recent past or with Modafinil ?

          Norepinephrine Inhibitors for eg. have the potential to agonize the Histamine system. Stimulants like Caffeine, Ephedrine, Nicotine, Betelnut/Supari ?

          [–]goataccount 0 points1 point  (0 children)

          Are their any reported case of sjs from nuvigil/waklert?

          [–]c3739 0 points1 point  (3 children)

          I have to say I've been reading this Reddit for awhile, have tried a few of things mentioned here, and have come to the conclusion that it's not worth the risk. I've never had a bad experience personally, but the inspection regulation is not the same as, say, food. Plus with some of the newer substances don't have tons of data backing them. Finally, it's not like anything here has shown to increase your IQ points by 20 points and the simple things like sleep, diet, exercise, etc. do wonders.

          [–]GuruLand[S] 2 points3 points  (2 children)

          Hello,

          While I understand, I recommend you to read this post "http://gwern.net/Modafinil" on Modafinil. He there addresses the productivity of taking modafinil, and also if SJS and other risks are worth even mentioning.

          Truth is, it's so unlikely that you develop any serious SJS, even the doctors at the hospital were very surprised they had a case like this out of modafinil, and said they never had it before - and this is in a hospital of one biggest UK cities.

          Cheers.

          [–]c3739 -2 points-1 points  (1 child)

          I was speaking to Nootropics in general, but even then the link provided is a blog post, not a peer reviewed journal. I'm not saying it's not well researched, just that I don't know the validity of the source.

          [–]MoriPPT 5 points6 points  (0 children)

          The blog post has a lot of citations.

          You're entitled to your choice and all, of course.

          [–]indoordinosaur 0 points1 point  (1 child)

          This is almost hard to believe. Haven't there only been like 20 reported cases of SJS from modafinil since it came out over a decade ago?

          [–]FromThatOtherPlace -1 points0 points  (1 child)

          How do I check if I have SJS? Been using modafinil for 6 months

          [–]GuruLand[S] 7 points8 points  (0 children)

          Haha, very likely you don't. If youve used it regularly youd most likely have already developed it, and trust me, you wouldve noticed. Just read the wikipedia page.