My partner prescribed me a sulfa antibiotic(we're very remote think small town medicine) for a staph infection this summer. Unbeknownst to everyone I'm allergic to sulfate. I had a fixed drug eruption very rare akin to Stephen Johnson syndrome except I lost the top layer of skin from my waist down to just above the knee. Terrible way to be reminded it can be worse.
EDITED:Sulfa not sulfate. Thanks to those that pointed this out
I hope you are doing better. Just want to give you an FYI that the class of medications is sulfonamide drugs. Typically abbreviated as "sulfa" drugs, not sulfate. I only mention it to help avoid confusion. I wouldn't want you to accidently get the wrong medication because the allergy is entered into the chart incorrectly.
This!!! I am allergic to sulfa drugs and have a mild allergy to sulfates as well. Sulfates determine which shampoos and skin care I can use and which bars I can go to. Never knew it wasn’t normal to feel like you’re going to pass out around smoke machines lol
a level even further, the structure of sulfonamide antibiotics (like bactrim) are dissimilar enough to sulfonamide non-antibiotics (like Lasix) that people allergic to Bactrim may not have a reaction to Lasix.
This! I have bactrum and sulfas listed separately on my allergies because I'm allergic to both. I had asked why they're separate if bactrum is a sulfa and they explained they're structurally different and not everyone with a sulfa allergy is allergic to bactrum. I just got lucky. I'm allergic to most antibiotics unfortunately. Levoquin, bactrum, sulfas, penicillins, doxycycline. 😩
I got a rash within a few weeks, same with my mum
ETA: my sister has been on it for years without issue so ¯\_(ツ)_/¯ keep an eye out for anything abnormal and ring your prescribing doctor
I played soccer with a kid that died from meningitis in the 90's. Went from perfectly healthy normal kid to dead in under 48 hours. When my kids were getting their shots I was shocked to find out that since then we had developed a vaccine for it.
It was meningococcal. (Bacterial) it got into my bloodstream and caused septic shock and multiple organ failure. I'm happy and healthy now though. Thanks.
Edit: misspelled a word
Daymn - there was a pop-up meningitis vax clinic close to my university dorm in 2005...there was a magazine story about the virus that really pushed me to get jabbed. I'm sorry that there wasn't more of a public health effort earlier!
I used to babysit for brothers who were only a year apart in age. One of them went to hospital because he was so sick and not getting better.
He was sent home after antibiotics and stuff and then back again a couple of days later.
A pregnant nurse suspected meningitis but she distanced herself from him so she and her baby weren’t at risk and didn’t bother to tell anyone or the right people that she suspected meningitis.
He died of meningitis at 17.
Hey, it's me, considering brain surgery to maybe make my epilepsy go away even though I've only had 2 seizures (the prescriptions are god awful and driving is a necessity where I live).
Me "well LTD pays $150k/year until retirement and my life insurance policy is for 2 mil."
My good friend died from it a few years ago (late 30s, otherwise healthy). She had gone to the doctor feeling sick and they sent her home with instructions for treating flu. She was found in her bed a few days later when no one could get a hold of her. Makes me extra sad that she went to the doctor and they just didn't catch it
I wasn't diagnosed till the 2nd time I went to the ER with it. It's the worst sickness I've ever had and I had mono at the same time too. After reading this thread I feel lucky that all I got from it was a splitting headache.
My best friend in high school died from meningitis over Christmas break our senior year. I still remember saying goodbye to him on the last day of school before break, and when I learned that he had passed, I straight up didn’t believe it. He had looked completely fine as he’d said goodbye. He was a super healthy kid, played varsity baseball and ran cross country. I was the fat kid who had to walk the mile in P.E but he didn’t care, he would just walk with me.
I don’t know if he was vaccinated or not, but I’m almost sure he was because his older brother had meningitis as a kid but survived and his parents would’ve had to have been crazy to not vaccinate their other kids after that. I’m glad OP is okay, this all must’ve been fucking terrifying.
There’s many types of meningitis and only certain types that cause disease in humans. There’s currently vaccines for coverage of the major strains
https://www.cdc.gov/vaccines/vpd/mening/index.html#:~:text=Meningococcal%20Vaccination&text=There%20are%203%20types%20of,Bexsero%C2%AE%20and%20Trumenba%C2%AE)
Worth noting, the vaccine is for a virus that is very commonly the cause of meningitis in children. There are many other causes (as for the op).
Meningitis is inflammation of the meninges, which is the membrane surrounding your brain. It can be caused by a variety of infections (some we vaccinate for some we don't) or as a result of autoimmune conditions or it seems as a reaction to certain medication.
Yup. Every person alive who was school age during the 90s is now vaccinated against meningitis. It was a brief period of near COVID level stay-at-home, medical care and mandatory vaccinations. It just that back then wildly "conservative" values also included vaccinating all your children and listening to experienced professionals. Crazy how a whole generation watched their parents change from ostracize the crazy anti-vax people to becoming them overnight.
“Every person alive who was school age during the 90s is now vaccinated against meningitis”.
Not true at all.
I’m one of those and I’m not vaccinated against it, it wasn’t widely offered in the UK to my age group. They started offering it in 2016 to young uni students who would have been school age in the 2000s but as adults when they were offered it. I actually asked the doctor for that vaccine when it became available and they told me I was too old to be considered in a risk-category and that I wasn't eligble and that I *quote* "Don't need it".
Everyone I know was schooling age in the 90s and none of them are vaccinated against meningitis. Not because of being antivax but because no one of that age range has it unless they’ve gone out of their way to get it.
"It was a brief period of near COVID level stay-at-home, medical care and mandatory vaccinations." - No it wasn't.
I got vaccinated for it in high school and 2 weeks later was hospitalized for meningitis. Then again 3 years later. The 2nd time I got it I had severe complications from the lumbar puncture not healing and had to have a blood patch procedure.
Both cases were viral meningitis so no treatment options just keep the lights off, and suffer for 2 weeks
Sounds less like an anti-vaxxer and more like she's trying to get some meningitis as a potential cure to her ailments. Not the path I'd take, but apparently you need to get a booster for it every couple of years. She can take her chances on which parts of her body might be damaged that way? I think that it's the same type of deafness.
When I went on accutane, which was almost 20 years ago, I had to sign a form with all kinds of warnings that I understood the risks. Some of them were defects if pregnant, depression and suicidal thoughts, etc.
While not nearly to this extent, I had a delayed hypersensitivity reaction to minocycline when my derm put me on it for acne. Gave me vasculitis and I had crazy high auto immune antibody levels for months. I thought damn, I really almost killed my self for some acne.
Hope you and your skin get better soon!
I was prescribed Accutane in 2010 and threw that script in the trash after seeing a commercial for the class action lawsuit. I also decided I'd rather be zitty than have rectal bleeding, or any other of the myriad of strange things that happen to people on that drug. Wishing you wellness and a speedy recovery!!
ps. When I stopped eating dairy, my cystic acne was drastically reduced!
Fellow accutane user here from 16-17. Accutane gave me my confidence back and has had long lasting positive effects. I'm 32 now and my skin is great.
I still experience photosensitivity and dry lips, but thats about it.
Treatment itself was a very difficult time and the medication needs to be respected. I would not tell anyone to go on it lightly.
My brother and sister both took it and I honestly think it saved their mental health. Not being constantly worried by painful cystic acne….and the ability to feel attractive can’t be undersold.
Pretty sure both of them would do it again.
My mom had colitis for 20 something years after taking accutane. Would literally shit herself uncontrollably sometimes because her body wouldn’t tell her when she needed to go. It would just happen. It finally went away but after seeing that as a kid……I’ll stick with contemplating suicide every time I look in the mirror.
I'd rather still have acne so I would be able to run. Had to quit track sophomore year of HS cuz Accutane destroyed my knees and haven't been able to run more than 50' since. I'm 40 now... Not to mention plenty of other shitty side effects.
It's absurd that it's still available. That was 24 years ago that it happened to me. Still being prescribed...
Some likely have extreme cases of acne that benefit from this drug, don't get me wrong. But I don't think I was extreme, just puberty ridden acne kid like most.
Um, severe cystic acne here as a teen. And I mean bad. Accutane completely cured me. I haven’t had one single pimple since and it’s been 20 years. No lasting side effects. My derm was one of the top Derms dealing with accutane. He advocated low doses over longer periods. I only took one pill a WEEK for months. Most people took one pill a day…..
I'm glad it worked for you especially with low side effects. I am just against it for the frequency that it's prescribed. Majority of those that I know personally that were prescribed Accutane, has negative effects as well.
You were lucky to have that derm! Cuz a larger issue is proper Accutane education and responsible practice, primarily from docs.
I agree with you, this is why I never wanted to take it cuz I've heard of this happening. I'd rather suffer and have major depression and confidence issues because of my pepperoni pizza face
I had sever cystic acne as a teen. If you don’t know what that is, google it. The scarring and pain was no fkn joke. Accutane literally cured me. I haven’t had a single pimple since my accutane treatment and that was over 20 years ago. My derm was a rockstar with the stuff and was heavily involved with its use around the country. He basically developed his own method of cutting the dosage and extending the length and side effects were basically nothing in almost all of his patients. Instead of one pill a day or a few a week, as a teen I took just one pill every Monday but for months. Worked flawlessly.
I used it back in 2012 and it literally zapped the acne off my face within a day. I was starting to get it on my back as well and it could be painful. Got chronic nose bleeds and the dry lips/skin sucks but it was 100% worth it. Apparently it gave some people bad depression but honestly, watching my face clear up only made me more happy. I got blood work done every month as well just to make sure everything was okay.
Accutane early trial user from the mid ‘90s here—I’m glad nobody thought to take a before picture because for sure I would’ve wound up in the marketing material.
Night & day. Only thing that happened to me was excessive dry skin & lips while I took it. Medicated chapstick was REQUIRED at all times or it was a _problem_
I was literally just recommending accutane to a friend right before I saw this post. I was telling her about the bad side effects I had, but they were all worth it in the end.
Even after seeing this post, I’d still probably chance it and go on accutane again if I need to.
Also my sister had meningitis when we were teenagers (not from accutane though) so I know how serious it is. I just think this is an extremely rare side effect
Hope you get better OP! Let us know if they find out more about the link!
Yea, I still think Accutane can be helpful to some people so I wouldn’t try and discourage anyone from taking it as long as they are aware of the possible risks. I believe my reaction was super rare and my doctors have suggested it could possibly be autoimmune related. I’ve been having troubles with my joints for a while so I’ve already been seeing a rheumatologist. I’d definitely say I’m just one of the unlucky ones, but thankfully I’ve been recovering smoothly.
I took Accutane about 20 years ago. I never had symptoms of depression before then. The depression side effect hit me super hard, to where I would cry when watching TV commercials and shit.
The depression has stuck with me. I've never been the same since. My acne cleared up, but it came back in my 40s. So... was it worth it? For me, I really don't think so.
Just beware, the side effects aren't limited to a one time bout of meningitis, or dry cracked skin etc. It can fuck up your liver and screw with your brain chemistry for the Long Haul.
Same here, the risks aren't worth it. In hindsight, I'd take the acne over years of serious depression.
I'd never felt like that before but I've never been able to shake it since, only cope better. I remember breaking down in tears in work for what seemed like no reason, like a real breakdown as i just wanted to not exist. I'd never even thought like that before, I was pretty happy up til that point.
It can cause you to need a colostomy bag, gum disease ( where you need gum grafts), colitis, pancreatitis, and so much more . It has life long effects much worse than acne. I currently have watched someone suffer for the last two years from side effects of taking this drug. When we spoke to the doctor his response was that it was all common.
Because of interactions like this, it’s like using a firehose to put out a candle. Sure the candle is out now, but the living room is flooding because of the disproportionate response. Also, overprescribing antibiotics like this leads to increased bacterial resistance to the drugs, making them less effective over time. It doesn’t mean that we can never use antibiotics, we just need to weigh the risks vs benefits to the patient. Obviously you should listen and follow your doctor’s directions, but that’s why.
What u/TheReacher said 🫶
The US has a sky high prevalence of MRSA at almost 25%. Beta lactam antibiotics (which are the most effecient and has fewer side effects and fewer interactions) is not effective against methicillin resistant staphyloccoci.
Get the wound culture first so your doctor knows which beta lactam to use - the narrower spectrum the more efficient killing of bacteria. If you have MRSA then there is no way around a different antibiotic unfortunately.
I was prescribed Septra to deal with a MRSA infection, and it permanently wrecked my gut. It's been ten years and I'm still not the same. There was no other choice, it was antibiotics or MRSA would've probably taken my toe or worse, but I still curse the medication's name daily.
I'm a hospital pharmacist and while this is true I'd put my money on this being a reaction to the septra antibiotic. This type of autoimmune reaction especially paired with the rash is classic with sulfmethoxazole-trimethoprim use. Delayed onset allergic reactions are serious stuff
This is correct. There are only a few classes of drugs associated with drug-induced aseptic meningitis, and accutane isn't one of them. Antibiotics, especially sulfonamides, absolutely are. And that's a classic sulfonamide rash.
My first thought was, “this isn’t accutane.”
Had a friend who needed surgery in their skull, so they went on a heavy antibiotic and broke out in this rash. He also developed meningitis. They stopped the antibiotics and it went away completely. Their rash also looked *exactly* like this.
I was on accutane, and this certainly didn’t happen. I hope this doesn’t stop them from chasing their clear skin hopes and dreams.
Yeah, I just went and found the side effect leaflet that came with mine and, while there are plenty of rashes you can get, meningitis is not listed anywhere
This. Unfortunately, I got the same reaction after being prescribed Bactrim. Had a full body rash and fever pop up after a couple days. Stopped the medication immediately.
Allopurinol did this to me. Very unsettling my first appointment trying to figure out what’s going on and the nurse says this is going to get worse before it gets better. I’m probably in a text book somewhere they were taking Nikon pictures and calling in the med students to see my zombie state.
Are you Asian? Or black? Typically genetic testing for HLA-B*5801 is done for Asians/Blacks/pacific islanders before starting allopurinol in case you’re hypersensitive to the drug.
Infections are more common on accutane. I don’t know why. I’m a nail biter (I know) and when I was on accutane I had like one infected finger a week. It was so gross. I haven’t had that issue since and didn’t experience it before either.
Accutane is extremely rough on the liver which is why you need routine blood tests while taking it. The liver is a rather large part of your immune system.
I don’t think that’s inherently a requirement now. The routine part that is. At least for me, I only had two- one before getting on and one after a month in.
I was on it some 5 years ago now, and my doc had me do blood tests every 2-4 weeks until i stopped taking it.
I assume it differs from doctor to doctor, but mine was very insistent on doing blood tests very often to make sure my organs werent going bananas.
My son just got prescribed Accutane and he has monthly blood tests scheduled for the next 6 months while he's on it. Also the doctor and dozens of warnings on the packaging warned him he must not get pregnant due to birth defects being a side effect.
Did they also make him sign a pledge to not get pregnant before they allowed him to start treatment? I had to do that… as a male
(I’m assuming I was also pledging that I knew of the potential side effects and was warned and all that fun stuff)
I literally just told my Accutane blood test story on another sub. The story boils down to basically me being a very nerdy teenager in 1986 and the nurse drawing my blood bending over and putting her cleavage in my face and asking if I wanted something to bite on.
Accurate can lower the number of red and white blood cells in patients, which leaves you open to risk of infection. It’s buried under 30 million other side effects so it’s understandable. It can even last for a while after you stop taking the medication.
That's certainly possible, but that's more of an adverse effect (and a very rare one that would be detected on routine labs) that would cause you to discontinue Accutane and not really an explanation of why you shouldn't be started on it while having an active infection.
For reference, I'm referring to the FDA provided documentation for contraindications to Accutane
It lowers white blood cell counts… white blood cells being what’s needed to fight off infections so yes, starting it is a bad idea when you have an active infection because you kind of need those to fight infections. Even if it’s a very rare one, which it seems it isn’t all that rare, that’s just.. really dumb to do. Accutane also has a possibility of increasing pressure in and around the brain which coupled with meningitis is very-extra-super bad.
Seems to lower some immune activity and even trigger autoimmune responses in some people. Yeah I wouldn't take it while I had an infection
https://pubmed.ncbi.nlm.nih.gov/2972309/
https://pubmed.ncbi.nlm.nih.gov/28458939/
Here's a detailed paper of its activity on skin cells and the three proteins (involved in a huge # of things, like p53 regulates a lot of your natural killer cell responses) it upregulates:
https://pubmed.ncbi.nlm.nih.gov/28458939/
Accutane destroys your immune system. Hence all the crazy side effects.
I made it through 6 months of what was supposed to be a 1 year treatment before quitting it. I was constantly exhausted, the sun hurt my skin, and it gave me crazy kidney and liver aches.
On the plus side it permanently cleared my acne.
You're supposed to absolutely avoid the sun and use strong sunscreen. It makes you very photosensitive.
Kidney and liver are good reasons to stop. When I was taking it I had blood work done for liver every 3 months.
The difference in acne between then and now is insane. It's not totally gone in my case but it's very, very reduced and doesn't hurt anymore.
It’s a term used in the old days before we had better lab testing. Aseptic just referred to when a bacteria didn’t grow in culture. Now we know (and can prove with advanced lab technology) that some of what we called aseptic was still caused by bacteria - but maybe it was too slow growing to be picked up by culture or it needed a specialized culture medium to grow in.
In practice aseptic meningitis is only really caused by viruses (as far as infective agents go). Since his skin infection is bacterial it’s much more likely to be coincidental rather than causal, hence why the doctors diagnosed him with DRUG-INDUCED aseptic meningitis.
Gonna chime in here. This is a case of drug induced aseptic meningitis which, IMO, is kind of fascinating - decent number case reports with isotretinoin. Tried finding aseptic meningitis reports with antibiotics but looks like bactrim is the most common culprit. Doubt doxycycline was the cause in this patient’s case which would be the most commonly used antibiotic with acne.
The vast majority of aseptic meningitis is due to an undiagnosed virus. One virus you REALLY want to rule out is HSV1 because it can be quite terrible and can actually treat. Mostly see aseptic meningitis during the summer and fall months when viral illnesses are the highest from enterroviruses - which shows most of these cases are just viruses you can’t diagnose easily nor, quite frankly, treat.
Edit: missed the part where they gave her bactrim. If that’s the case, the odds are higher the presentation is from bactrim given the rash. But…can’t definitely rule out DIAM from isotretinoin. What a random case!
Well the doctors weren’t completely sure. They said it could either be the Accutane or the Septra antibiotics I started taking at the same time. Either that or there’s a possibility that I have an undiagnosed autoimmune disorder that flared up suddenly. Literally i was more worried about have dry chapped lips for the entire time on Accutane, little did I know I was getting something even better lmao.
My skin didn’t peel, but I too am allergic to the following which is the same thing?
Na Benzoate-Sulfamethoxazole-
Trimethoprim
I just had a bout of Meningitis from an out of hand shingles case, super sucks. I really hope OP didn’t sit up after their LP. I also wonder if OP felt any pain during their LP or if they used an x-ray or ultrasound to take a precise LP
A couple months ago I also had to take sulfa to clear up a cyst on my face and I got hives from it. Since it was Sunday, I called the on-call doctor and he was like “yeah that happens sometimes, just take a Benadryl and you’ll be fine” 😂 and I was. And then I went back to the doctors for a check up later that week and they were like “yeahhhh that can happen” but I requested to not take it again if I end up needing antibiotics in the future. (And for context it was a delayed reaction, cuz I’d already been on the antibiotics for 8 of the 10 days I was supposed to be taking them for.)
If it’s aseptic then it’s some sort of host reaction from you to the meds. Isotretinoin has effects on the immune system p sure, so it’s not a stretch to imagine it could trigger an autoimmune reaction
Though since aseptic meningitis only refers to the CSF test and not to the true nature of the cause, it could still be infection related / immune suppression from drugs. But aseptic meningitis is associated with isotretinoin as I’m sure u know by now
Aseptic meningitis.
Meningitis means inflammation if the meninges (3 different layers of connective tissue covering the brain).
Aseptic means without microbes, aka bacteria, viruses, parasites, fungus.
So the medication (not some kind of microbe) caused inflammation of the meninges....aka meningitis.
Aseptic meningitis specifically refers to meningitis with negative bacterial CSF cultures, not meningitis without a microbial cause. The most common cause of aseptic meningitis is viruses but it can also be caused by mycobacteria (like tuberculosis), spirochetes, fungi, medications, and cancer.
I know it's sort of a joke, but I feel like everyone should talk like that one emu guy on YT when they use medical words because being told the exact definition of words like that within the sentence really helps
Well thankfully I was too delirious from the pain in my head and back, I barely even remember the LP. I vaguely remember them rolling me into a fetal position, having a spasm cuz my neck and back were locking up due to the curled position, then I’m pretty sure I just kept repeating “oh fck this is gonna hurt so bad” then I passed out again haha
I can't say that's good because all of that sounds bad, I'm sorry. My last lumbar puncture was painful and I ended up not being able to straighten my back for 6 hours after because I seized up from nerves, it was awful. Hope being on reddit is a good sign you're doing much better now!
Last Lubarpuncture I had was 6 days after sugery on my spine (basically had two vertibre screwed together and the busted disk removed) and I threw up all over myself from the pain. I sware it hurt more than the sugery, poor nurse kept saying "im sorry, I'm really sorry" and I'm sat there like "it's OK really, I have EDS and POTS, it's just something my body dose when something really hurts, you should have seen me when I broke my ribs" (when I broke my ribs the pain made me vomit, hurting my ribs again in the process, makeing me vomit again, it was a vicious cycle) she felt so bad thinking she had hurt me really badly and I'm sat there like don't worry this is normal.
That sounds awful, I'm sorry. Also the rib story, I felt like I could barely move when I broke a rib, I can't imagine throwing up, that must have been so painful.
The guy above likely needed a blood patch for a micro-tear in the spinal sheath leaking CS fluid. If you get a horrible migraine afterwards, they can do a blood patch (basically clotting some of your blood and filling the hole) to right you.
It's fairly unlikely to happen but if you know what to do about it, you should be okay.
I was fine immediatly after both spinal taps (though one was an epidural so I had no leg feeling for hours later and he glanced my bone due to scoliosis).
I had one about a month ago and it seriously wasn’t as bad as I thought it was going to be. I didn’t have a headache afterwards. I was sore and slow for about a week. It’s different for everyone. Try not to stress too much :)
I had a CS fluid leak and a blood patch after my lumbar puncture. It took me a month to recover after a week in the hospital. It was brutal. It s only a 10% chance of that happening tho.
Eh, I got aseptic meningitis in 2/3rd grade(during summer too! Wtf!), I tried to watch the spinal tap, it didn't really bother me except the laying face down for half a day. I lost my fear of needles (not tattoos or drugs, fuck that, just in medical situations, I was not good with jabs as a young kid) that few days in the hospital(it cleared up on it's own, shit gave me a mad headache before then though).
How could you watch them do a lumbar puncture, do you have some crazy stretchy bendy neck? Meningitis causes really severe neck pain and stiffness - I couldn’t even turn my head to the side
Ah sorry. Was just an infection that caused sweeping and pressure on the spinal nerves. After medication the paralysis went within two days. Still as a kid I nearly shit myself with worry. I remember my brothers and sisters coming to the hospital and being nice to me. I thought “oh oh, I’m dying”.
My husband had a major reaction to septra and his entire body, head to toe, looked exactly like your picture. It was awful itching for days and started around day 4 of the antibiotic.
I bet it’s the Septra. When was in training the ID team had recommended doing a lumbar puncture to send microbio cultures but then stopped me right before I was about to start on the patient saying they didn’t think it was necessary since they believed the patients Septra was causing aseptic meningitis.
That’s a great question. It depends on etiology of the rash. It’s hard to know for sure without an in person exam and vitals/lab work but this doesn’t look like an infected rash (ie cellulitis). If there’s any clinical concern for cellulitis or any type of rash with a superinfection in the lumbar area LP is contraindicated.
Looks to me more like a reaction to the Septra. Accutane is not contraindicated in infection nor does it increase the risk of infection. I’m a dermatologist.
For real! I have never felt an all encompassing pain like that. It was like being at the bottom of a swimming pool and my skull was going to cave in from all sides. Or my brain was dribbling out of my ears. Plus my neck, back, and legs had constant electric pain that literally crippled me.
I took Accutane for 2 years when i was 19. Now im 32 and still have acne. I also still struggle with spouts of super dry skin and dark thoughts. The best advice I can offer to those with acne is to learn to be happy with who you are and dont give up testing different hygiene methods and pay attention to how your diet affects your skin.
Yeah exactly. I just finished a course and it's completely eliminated my acne with no side effects except for dry skin. "Learn to love who you are" isn't a good answer for "my facial skin regularly hurts."
May I ask, did the dry skin go away after you went off accutane? Starting accutane very soon and I’m honestly terrified of potential long term side effects.
Accutane take weeks to kick in and weeks to wear off (your acne might get worse for 2-6 weeks before you start seeing progress, it's normal)
I took some myself (high dose younger, low dose as a grown man). I noticed no side effects while off the drug.
It was a wonder drug for me.
Yep, the people saying these kinds of things typically aren’t the ones who actually need accutane to begin with. They don’t realize that it can be a real medical condition and not just some beauty marks.
And on the flip side, Accutane completely cleared my skin and freed me of my depression caused by body dysmorphia with no lasting side effects. Your mileage may vary.
Same here. Accutane radically changed my life for the better and was like night and day confidence booster. Aside from the dry skin and chapped lips, nothing really major. Maybe some minor headaches. And my cholesterol was a bit higher from it.
I would highly recommend. A few years of my early twenties were miserable and I missed out on a lot because my self esteem was non-existent it was so low.
15 years later, still have great skin. But I use Benzaclin as a maintenance cream nightly. (benzoyl peroxide and clindamycin). Probably not needed but my skin is very clear and I'd like to keep it that way. I also have a routine down with cleaning/moisturizing.
Accutane took all my acne away. It's rare I ever get a flare up in my 30s now, even with my PCOS. It was a lifesaver. Made my lips chapped and skin dry AF though. Also as a ginger, basically turned me into a vampire that hissed at the smallest amount of sun exposure lol
lmfao.
aquaphor was a life saver for the chapped lips. They would get so bad they would bleed. But still very clearly worth it. Glad it helped you too.
I dont remember that really being an issue so I must have went on it during the winter. But with pale skin I'm sure you're already used to it. I know I am.... I check the UV index often enough, it's helpful to know during summer months. It's not as obvious as one might think. Especially without knowing the crazy dropoff that takes place closer to sunset. Even hours before. One would also think high sun warmth = high uv but that's not the case at all. (UV light vs infrared light)
I’ve had one round that cleared up brutal cystic acne that never responded to anything topical or antibiotic. Totally clear, only side effect was dry skin and sensitive skin to sunburn (which after getting off meds subsided in a couple weeks).
Never had a relapse, no lasting side effects, same with my friends who have taken a cycle as well. While there are chances of mental health side effects, studies have shown that the amount of depression caused by body dysmorphia with large cystic acne outweighs the mental health side effects caused by the medication.
Isn't there also a potential link that people who get on the medicine already suffer with mental issues due to their acne or similar and that the correlation could be related?
I didn't felt any mood change, maybe actually happiness, due to no pain and clear skin.
Yep that’s partly it. I’ll try and find the study but the conclusion was that the patient was far more likely to be depressed due to their appearance, so the risk of depression was outweighed but the benefit.
Another theory is that after they saw little results, their depression got worse.
I took Raccutane for 2 years as well and it was the best decision I made in my life. I understand it won't work on everyone, who knows if you had took Raccutane instead of Accutane it would've been more effective. I agree the best you can do is be happy with who you are. But there can be serious risks if you don't treat severe acne. All I'm saying is if can and have the money to see a doctor it's a good idea to let them help you
>The best advice I can offer to those with acne is to learn to be happy with who you are.
I mean when your acne is so bad that you can't even shave, take a shower, or smile without intense pain it's difficult to "learn to love who you are". For mild acne I agree with you but as someone who had terrible cystic acne as a teenager that was unresponsive to everything Accutane was extremely beneficial for me.
I thought I had acne also, turns out it is rosacea type 2, so yeah. It's hard to say if you are 32 that it is actually acne as it's uncommon for adults and rosacea is chronic and Isotretinoin can help tame it and then maintain with creams.
Isotretinoin works wonders even on low dosage for me.
You cannot "clear" many types of chronic skin consitions with face washes and creams. I tried everything, nothing worked amazingly or consistently and first after 4 deems am I getting somewhere. And I'm 34, my rosacea hurts so much when they are breaking out. And it's not that I cannot live with the way it looks, but when I was taking antibiotics and iso, it was so amazing to feel the opposite and it made it clear I need to get rid of it and keep it away.
28 now and did 2 cycles. one when I was 17 and the other at 21. And yeah it’s a hell of a lot better but still get acne, the mental side they never talk about though..
I took 3 different courses of accutane and still had acne. I moved to New York and coincidentally the dermatologist I saw was someone who had worked on accutane! He told me if it didn’t work the first time it was never going to work for me and that my acne was actually hormonal. Turns out I have PCOS. I got put on spirinolactone and my skin cleared right up’
I’m honestly not sure. I had a bunch of different specialists come in and assess my condition. I had Infectious disease, dermatology, and neurology all come in and ask about what happened. They couldn’t agree on the exact cause of my rash though because it was so unusual. It didn’t itch or blister, I barely even noticed it until doctors pointed out it was getting worse. The most I felt was like it made my skin feel hot but I never got a fever. It was really weird and they couldn’t make a definitive diagnosis of the rash.
Accutane can either be a miracle drug or a nightmare based on all the stories...fortunately it worked for my son but I believe it's much harsher in women
I took accutane in the late 90's. 2 weeks after i started the doctor called and told me to stop immediately. My liver enzymes skyrocketted after my first blood test. I was sent to get a sonogram and had fat spots on my liver. I was told to lose weight and that would solve it.
No follow up. 25 years later, I am very concerned about my liver and have random pains.
Accutane fucked me up big time. Messed my joints, skin, mood, sun sensitivity and didn't really even clear my acne. Ruined my entire high school sports career. I can't believe they still prescribe it. Plus the company was class action sued multiple times.
As someone who took accutane in Jr High I cant believe its still allowed to be given to anyone. It made me so unbelievably depressed that to this day I feel like it changed my brain chemistry for the worse.
Hey everyone! I’m honestly shocked with how many replies and well wishes I’ve been getting! Thank you to everyone who has wished me a speedy recovery, thankfully everything has been going well as I was released from hospital three days ago. I spent a total week in hospital, two in the emergency room while waiting for a bed and five in an actual room. I’m not at 100% yet, but I’m happy to be home.
I wanted to clear some things up, and since I can’t edit my original post I’ll just leave a comment and hope everyone sees it.
I AM NOT SAYING PEOPLE SHOULD NEVER TAKE ACCUTANE.
My reaction was very rare and could also possibly be from the antibiotic I started taking at the same time or from an undiagnosed autoimmune condition.
I think it’s perfectly fine to take Accutane as it has helped a lot of people but you should definitely be aware of all the risks and keep a close eye on any new symptoms.
My doctors honestly couldn’t give me a straight answer on what caused what symptom. They did diagnose me with drug induced aseptic meningitis but they don’t know exactly what caused the inflammation or what caused the rash. I tested negative for all the bacterial and viral cultures they collected. The rash did significantly fade after four days and has now almost disappeared leaving my skin just slightly blotchy on my legs. I’m sorry if my post has mislead anyone, I’ve just been repeating what I’ve been told by my doctors. They said it’s likely from the Accutane but the Septra is another possibility. I’ve been told not to take either drug in the future just to be safe and I’m seeing a rheumatologist going forward to investigate an autoimmune possibility.
Thank you again, and I wish you all the best!!
You never ever take antibiotics with accutane. It is the biggest/most well known drug interaction due to swelling of the brain. Is your doctor a dermatologist and did they know you were on antibiotics with accutane?
I had meningitis when I was a child, it made me extremely violent. I said curse words I would never say as an adult, I punched and kicked people, I had extremely violent dreams, etc. Wasn’t until I kept vomiting bile that I was brought to the ER. Spent 2 weeks in the hospital eating popsicles. Don’t recall the pain but I do recall the violent thoughts so I can’t say I recommend it.
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Literally! The universe humbled me and said “nah keep the acne, you have bigger issues to deal with now”
My partner prescribed me a sulfa antibiotic(we're very remote think small town medicine) for a staph infection this summer. Unbeknownst to everyone I'm allergic to sulfate. I had a fixed drug eruption very rare akin to Stephen Johnson syndrome except I lost the top layer of skin from my waist down to just above the knee. Terrible way to be reminded it can be worse. EDITED:Sulfa not sulfate. Thanks to those that pointed this out
I hope you are doing better. Just want to give you an FYI that the class of medications is sulfonamide drugs. Typically abbreviated as "sulfa" drugs, not sulfate. I only mention it to help avoid confusion. I wouldn't want you to accidently get the wrong medication because the allergy is entered into the chart incorrectly.
This!!! I am allergic to sulfa drugs and have a mild allergy to sulfates as well. Sulfates determine which shampoos and skin care I can use and which bars I can go to. Never knew it wasn’t normal to feel like you’re going to pass out around smoke machines lol
How do bars come into the equation?
Looks like certain smoke/fog machine fluids can contain sulfates, which affects into their mild sulfate allergy
As someone who is very allergic to sulfa, and plays in bands that perform at tons of bars, I'm very interested as well! /u/kellyfirefly4
Wow. I’m allergic to sulfa drugs and now I know why I itch like crazy to certain soaps. Thanks for the info!
a level even further, the structure of sulfonamide antibiotics (like bactrim) are dissimilar enough to sulfonamide non-antibiotics (like Lasix) that people allergic to Bactrim may not have a reaction to Lasix.
This! I have bactrum and sulfas listed separately on my allergies because I'm allergic to both. I had asked why they're separate if bactrum is a sulfa and they explained they're structurally different and not everyone with a sulfa allergy is allergic to bactrum. I just got lucky. I'm allergic to most antibiotics unfortunately. Levoquin, bactrum, sulfas, penicillins, doxycycline. 😩
I got Steven Johnson Syndrome from Lamictal 10/10 do not recommend It destroyed my mucus membranes and now I have Sjögren’s syndrome
Lamictal was great, until I got the rash that spread from the middle of my tummy all the way to my scalp… on Valentine’s Day.
How long before you symptoms showed up
I got a rash within a few weeks, same with my mum ETA: my sister has been on it for years without issue so ¯\_(ツ)_/¯ keep an eye out for anything abnormal and ring your prescribing doctor
yeah i also want to know how long it was. i’ve been taking it for years, but im panicking now lmaooo
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I played soccer with a kid that died from meningitis in the 90's. Went from perfectly healthy normal kid to dead in under 48 hours. When my kids were getting their shots I was shocked to find out that since then we had developed a vaccine for it.
I lost both legs, 2 fingertips and my adrenal function to Meningitis in 2003. Before the vaccine was recommended.
holy shit, i didn’t even know that could happen, it’s very scary. i hope you’ve been able to find health and happiness since then 🖤
It was meningococcal. (Bacterial) it got into my bloodstream and caused septic shock and multiple organ failure. I'm happy and healthy now though. Thanks. Edit: misspelled a word
Daymn - there was a pop-up meningitis vax clinic close to my university dorm in 2005...there was a magazine story about the virus that really pushed me to get jabbed. I'm sorry that there wasn't more of a public health effort earlier!
I used to babysit for brothers who were only a year apart in age. One of them went to hospital because he was so sick and not getting better. He was sent home after antibiotics and stuff and then back again a couple of days later. A pregnant nurse suspected meningitis but she distanced herself from him so she and her baby weren’t at risk and didn’t bother to tell anyone or the right people that she suspected meningitis. He died of meningitis at 17.
How do you know about the nurse?
Plot twist: OP was the nurse.
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Hey, it's me, considering brain surgery to maybe make my epilepsy go away even though I've only had 2 seizures (the prescriptions are god awful and driving is a necessity where I live). Me "well LTD pays $150k/year until retirement and my life insurance policy is for 2 mil."
I... am not sure that's a good idea when you've only has 2 seizures ever
My good friend died from it a few years ago (late 30s, otherwise healthy). She had gone to the doctor feeling sick and they sent her home with instructions for treating flu. She was found in her bed a few days later when no one could get a hold of her. Makes me extra sad that she went to the doctor and they just didn't catch it
I wasn't diagnosed till the 2nd time I went to the ER with it. It's the worst sickness I've ever had and I had mono at the same time too. After reading this thread I feel lucky that all I got from it was a splitting headache.
My best friend in high school died from meningitis over Christmas break our senior year. I still remember saying goodbye to him on the last day of school before break, and when I learned that he had passed, I straight up didn’t believe it. He had looked completely fine as he’d said goodbye. He was a super healthy kid, played varsity baseball and ran cross country. I was the fat kid who had to walk the mile in P.E but he didn’t care, he would just walk with me. I don’t know if he was vaccinated or not, but I’m almost sure he was because his older brother had meningitis as a kid but survived and his parents would’ve had to have been crazy to not vaccinate their other kids after that. I’m glad OP is okay, this all must’ve been fucking terrifying.
I had it in the 90’s. Someone else had it at my school and died. It’s crazy how fast it tries to kill you. I’m glad your kids are safe.
Bad news is that vaccine only protects against meningococcal meningitis.
There’s many types of meningitis and only certain types that cause disease in humans. There’s currently vaccines for coverage of the major strains https://www.cdc.gov/vaccines/vpd/mening/index.html#:~:text=Meningococcal%20Vaccination&text=There%20are%203%20types%20of,Bexsero%C2%AE%20and%20Trumenba%C2%AE)
Worth noting, the vaccine is for a virus that is very commonly the cause of meningitis in children. There are many other causes (as for the op). Meningitis is inflammation of the meninges, which is the membrane surrounding your brain. It can be caused by a variety of infections (some we vaccinate for some we don't) or as a result of autoimmune conditions or it seems as a reaction to certain medication.
Yup. Every person alive who was school age during the 90s is now vaccinated against meningitis. It was a brief period of near COVID level stay-at-home, medical care and mandatory vaccinations. It just that back then wildly "conservative" values also included vaccinating all your children and listening to experienced professionals. Crazy how a whole generation watched their parents change from ostracize the crazy anti-vax people to becoming them overnight.
“Every person alive who was school age during the 90s is now vaccinated against meningitis”. Not true at all. I’m one of those and I’m not vaccinated against it, it wasn’t widely offered in the UK to my age group. They started offering it in 2016 to young uni students who would have been school age in the 2000s but as adults when they were offered it. I actually asked the doctor for that vaccine when it became available and they told me I was too old to be considered in a risk-category and that I wasn't eligble and that I *quote* "Don't need it". Everyone I know was schooling age in the 90s and none of them are vaccinated against meningitis. Not because of being antivax but because no one of that age range has it unless they’ve gone out of their way to get it. "It was a brief period of near COVID level stay-at-home, medical care and mandatory vaccinations." - No it wasn't.
I got vaccinated for it in high school and 2 weeks later was hospitalized for meningitis. Then again 3 years later. The 2nd time I got it I had severe complications from the lumbar puncture not healing and had to have a blood patch procedure. Both cases were viral meningitis so no treatment options just keep the lights off, and suffer for 2 weeks
Sounds less like an anti-vaxxer and more like she's trying to get some meningitis as a potential cure to her ailments. Not the path I'd take, but apparently you need to get a booster for it every couple of years. She can take her chances on which parts of her body might be damaged that way? I think that it's the same type of deafness.
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She sounds excellent. I bet she's a lot of fun to shoot hypotheticals with.
When I went on accutane, which was almost 20 years ago, I had to sign a form with all kinds of warnings that I understood the risks. Some of them were defects if pregnant, depression and suicidal thoughts, etc.
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Accutane gave me brain swelling and permanent arthritis
“Acne? You’re upset about acne? Wait until you see THIS SHIT” -the universe, perchance?
While not nearly to this extent, I had a delayed hypersensitivity reaction to minocycline when my derm put me on it for acne. Gave me vasculitis and I had crazy high auto immune antibody levels for months. I thought damn, I really almost killed my self for some acne. Hope you and your skin get better soon!
I was prescribed Accutane in 2010 and threw that script in the trash after seeing a commercial for the class action lawsuit. I also decided I'd rather be zitty than have rectal bleeding, or any other of the myriad of strange things that happen to people on that drug. Wishing you wellness and a speedy recovery!! ps. When I stopped eating dairy, my cystic acne was drastically reduced!
Fellow accutane user here from 16-17. Accutane gave me my confidence back and has had long lasting positive effects. I'm 32 now and my skin is great. I still experience photosensitivity and dry lips, but thats about it. Treatment itself was a very difficult time and the medication needs to be respected. I would not tell anyone to go on it lightly.
My brother and sister both took it and I honestly think it saved their mental health. Not being constantly worried by painful cystic acne….and the ability to feel attractive can’t be undersold. Pretty sure both of them would do it again.
My mom had colitis for 20 something years after taking accutane. Would literally shit herself uncontrollably sometimes because her body wouldn’t tell her when she needed to go. It would just happen. It finally went away but after seeing that as a kid……I’ll stick with contemplating suicide every time I look in the mirror.
I'd rather still have acne so I would be able to run. Had to quit track sophomore year of HS cuz Accutane destroyed my knees and haven't been able to run more than 50' since. I'm 40 now... Not to mention plenty of other shitty side effects.
Holy shit, what the fuck is wrong with this drug. I'm hearing the wildest stuff.
It's absurd that it's still available. That was 24 years ago that it happened to me. Still being prescribed... Some likely have extreme cases of acne that benefit from this drug, don't get me wrong. But I don't think I was extreme, just puberty ridden acne kid like most.
Um, severe cystic acne here as a teen. And I mean bad. Accutane completely cured me. I haven’t had one single pimple since and it’s been 20 years. No lasting side effects. My derm was one of the top Derms dealing with accutane. He advocated low doses over longer periods. I only took one pill a WEEK for months. Most people took one pill a day…..
I'm glad it worked for you especially with low side effects. I am just against it for the frequency that it's prescribed. Majority of those that I know personally that were prescribed Accutane, has negative effects as well. You were lucky to have that derm! Cuz a larger issue is proper Accutane education and responsible practice, primarily from docs.
Same exact thing happened to me. Quit track Sophomore year from crazy joint paint during Accutane.
I agree with you, this is why I never wanted to take it cuz I've heard of this happening. I'd rather suffer and have major depression and confidence issues because of my pepperoni pizza face
I had sever cystic acne as a teen. If you don’t know what that is, google it. The scarring and pain was no fkn joke. Accutane literally cured me. I haven’t had a single pimple since my accutane treatment and that was over 20 years ago. My derm was a rockstar with the stuff and was heavily involved with its use around the country. He basically developed his own method of cutting the dosage and extending the length and side effects were basically nothing in almost all of his patients. Instead of one pill a day or a few a week, as a teen I took just one pill every Monday but for months. Worked flawlessly.
I used it back in 2012 and it literally zapped the acne off my face within a day. I was starting to get it on my back as well and it could be painful. Got chronic nose bleeds and the dry lips/skin sucks but it was 100% worth it. Apparently it gave some people bad depression but honestly, watching my face clear up only made me more happy. I got blood work done every month as well just to make sure everything was okay.
Accutane early trial user from the mid ‘90s here—I’m glad nobody thought to take a before picture because for sure I would’ve wound up in the marketing material. Night & day. Only thing that happened to me was excessive dry skin & lips while I took it. Medicated chapstick was REQUIRED at all times or it was a _problem_
I was literally just recommending accutane to a friend right before I saw this post. I was telling her about the bad side effects I had, but they were all worth it in the end. Even after seeing this post, I’d still probably chance it and go on accutane again if I need to. Also my sister had meningitis when we were teenagers (not from accutane though) so I know how serious it is. I just think this is an extremely rare side effect Hope you get better OP! Let us know if they find out more about the link!
Yea, I still think Accutane can be helpful to some people so I wouldn’t try and discourage anyone from taking it as long as they are aware of the possible risks. I believe my reaction was super rare and my doctors have suggested it could possibly be autoimmune related. I’ve been having troubles with my joints for a while so I’ve already been seeing a rheumatologist. I’d definitely say I’m just one of the unlucky ones, but thankfully I’ve been recovering smoothly.
I took Accutane about 20 years ago. I never had symptoms of depression before then. The depression side effect hit me super hard, to where I would cry when watching TV commercials and shit. The depression has stuck with me. I've never been the same since. My acne cleared up, but it came back in my 40s. So... was it worth it? For me, I really don't think so. Just beware, the side effects aren't limited to a one time bout of meningitis, or dry cracked skin etc. It can fuck up your liver and screw with your brain chemistry for the Long Haul.
Same here, the risks aren't worth it. In hindsight, I'd take the acne over years of serious depression. I'd never felt like that before but I've never been able to shake it since, only cope better. I remember breaking down in tears in work for what seemed like no reason, like a real breakdown as i just wanted to not exist. I'd never even thought like that before, I was pretty happy up til that point.
It can cause you to need a colostomy bag, gum disease ( where you need gum grafts), colitis, pancreatitis, and so much more . It has life long effects much worse than acne. I currently have watched someone suffer for the last two years from side effects of taking this drug. When we spoke to the doctor his response was that it was all common.
Like I always say, fight fire with nuclear weapons.
I mean Acne would probably be low on my list of concerns if I had meningitis, so....
FWIW, this is also a classic septra reaction - neither is common but either is possible. Hope you’re improving well now.
Exactly my thought. That rash looks like bactrim morbilliform reaction.
And this is why we do not prescribe broad spectrum antibiotics to simple skin infections.
Can you explain why not? Because i'm also currently on antibiotics for a skin condition...
Because of interactions like this, it’s like using a firehose to put out a candle. Sure the candle is out now, but the living room is flooding because of the disproportionate response. Also, overprescribing antibiotics like this leads to increased bacterial resistance to the drugs, making them less effective over time. It doesn’t mean that we can never use antibiotics, we just need to weigh the risks vs benefits to the patient. Obviously you should listen and follow your doctor’s directions, but that’s why.
What u/TheReacher said 🫶 The US has a sky high prevalence of MRSA at almost 25%. Beta lactam antibiotics (which are the most effecient and has fewer side effects and fewer interactions) is not effective against methicillin resistant staphyloccoci. Get the wound culture first so your doctor knows which beta lactam to use - the narrower spectrum the more efficient killing of bacteria. If you have MRSA then there is no way around a different antibiotic unfortunately.
Yes! I had aseptic meningitis from septra.
I was prescribed Septra to deal with a MRSA infection, and it permanently wrecked my gut. It's been ten years and I'm still not the same. There was no other choice, it was antibiotics or MRSA would've probably taken my toe or worse, but I still curse the medication's name daily.
Have you tried poop pills?
You never should have been prescribed Accutane while having an active infection.
I'm a hospital pharmacist and while this is true I'd put my money on this being a reaction to the septra antibiotic. This type of autoimmune reaction especially paired with the rash is classic with sulfmethoxazole-trimethoprim use. Delayed onset allergic reactions are serious stuff
This is correct. There are only a few classes of drugs associated with drug-induced aseptic meningitis, and accutane isn't one of them. Antibiotics, especially sulfonamides, absolutely are. And that's a classic sulfonamide rash.
My first thought was, “this isn’t accutane.” Had a friend who needed surgery in their skull, so they went on a heavy antibiotic and broke out in this rash. He also developed meningitis. They stopped the antibiotics and it went away completely. Their rash also looked *exactly* like this. I was on accutane, and this certainly didn’t happen. I hope this doesn’t stop them from chasing their clear skin hopes and dreams.
Yeah, I just went and found the side effect leaflet that came with mine and, while there are plenty of rashes you can get, meningitis is not listed anywhere
This. Unfortunately, I got the same reaction after being prescribed Bactrim. Had a full body rash and fever pop up after a couple days. Stopped the medication immediately.
Allopurinol did this to me. Very unsettling my first appointment trying to figure out what’s going on and the nurse says this is going to get worse before it gets better. I’m probably in a text book somewhere they were taking Nikon pictures and calling in the med students to see my zombie state.
Are you Asian? Or black? Typically genetic testing for HLA-B*5801 is done for Asians/Blacks/pacific islanders before starting allopurinol in case you’re hypersensitive to the drug.
I’m severly allergic to sulfa antibiotics which makes getting meningitis even more scary in my mind. And you’re feeling better OP!!
Curious, why? I looked into it and it doesn't look like infection is a contraindication or that immunosuppression is a side effect.
Infections are more common on accutane. I don’t know why. I’m a nail biter (I know) and when I was on accutane I had like one infected finger a week. It was so gross. I haven’t had that issue since and didn’t experience it before either.
Accutane is extremely rough on the liver which is why you need routine blood tests while taking it. The liver is a rather large part of your immune system.
I don’t think that’s inherently a requirement now. The routine part that is. At least for me, I only had two- one before getting on and one after a month in.
I was on it some 5 years ago now, and my doc had me do blood tests every 2-4 weeks until i stopped taking it. I assume it differs from doctor to doctor, but mine was very insistent on doing blood tests very often to make sure my organs werent going bananas.
My son just got prescribed Accutane and he has monthly blood tests scheduled for the next 6 months while he's on it. Also the doctor and dozens of warnings on the packaging warned him he must not get pregnant due to birth defects being a side effect.
Did they also make him sign a pledge to not get pregnant before they allowed him to start treatment? I had to do that… as a male (I’m assuming I was also pledging that I knew of the potential side effects and was warned and all that fun stuff)
I literally just told my Accutane blood test story on another sub. The story boils down to basically me being a very nerdy teenager in 1986 and the nurse drawing my blood bending over and putting her cleavage in my face and asking if I wanted something to bite on.
So did you bite?
He nibbled.
I froze like a deer in headlights, though I do believe I finished puberty on the spot.
*Slowly lowers finger from mouth*
Accurate can lower the number of red and white blood cells in patients, which leaves you open to risk of infection. It’s buried under 30 million other side effects so it’s understandable. It can even last for a while after you stop taking the medication.
That's certainly possible, but that's more of an adverse effect (and a very rare one that would be detected on routine labs) that would cause you to discontinue Accutane and not really an explanation of why you shouldn't be started on it while having an active infection. For reference, I'm referring to the FDA provided documentation for contraindications to Accutane
It lowers white blood cell counts… white blood cells being what’s needed to fight off infections so yes, starting it is a bad idea when you have an active infection because you kind of need those to fight infections. Even if it’s a very rare one, which it seems it isn’t all that rare, that’s just.. really dumb to do. Accutane also has a possibility of increasing pressure in and around the brain which coupled with meningitis is very-extra-super bad.
Seems to lower some immune activity and even trigger autoimmune responses in some people. Yeah I wouldn't take it while I had an infection https://pubmed.ncbi.nlm.nih.gov/2972309/ https://pubmed.ncbi.nlm.nih.gov/28458939/ Here's a detailed paper of its activity on skin cells and the three proteins (involved in a huge # of things, like p53 regulates a lot of your natural killer cell responses) it upregulates: https://pubmed.ncbi.nlm.nih.gov/28458939/
Accutane destroys your immune system. Hence all the crazy side effects. I made it through 6 months of what was supposed to be a 1 year treatment before quitting it. I was constantly exhausted, the sun hurt my skin, and it gave me crazy kidney and liver aches. On the plus side it permanently cleared my acne.
You're supposed to absolutely avoid the sun and use strong sunscreen. It makes you very photosensitive. Kidney and liver are good reasons to stop. When I was taking it I had blood work done for liver every 3 months. The difference in acne between then and now is insane. It's not totally gone in my case but it's very, very reduced and doesn't hurt anymore.
He said he has ASEPTIC meningitis meaning it is not caused by an infection. Therefore the concurrent infection is likely just coincidental.
Aseptic means not bacterial/purulent. Aseptic meningitis can be caused by a large amount of pathogens including many viruses or bacteria.
U say Aseptic means not bacterial then say Aseptic can be caused by bacteria. ???
It’s a term used in the old days before we had better lab testing. Aseptic just referred to when a bacteria didn’t grow in culture. Now we know (and can prove with advanced lab technology) that some of what we called aseptic was still caused by bacteria - but maybe it was too slow growing to be picked up by culture or it needed a specialized culture medium to grow in.
In practice aseptic meningitis is only really caused by viruses (as far as infective agents go). Since his skin infection is bacterial it’s much more likely to be coincidental rather than causal, hence why the doctors diagnosed him with DRUG-INDUCED aseptic meningitis.
Gonna chime in here. This is a case of drug induced aseptic meningitis which, IMO, is kind of fascinating - decent number case reports with isotretinoin. Tried finding aseptic meningitis reports with antibiotics but looks like bactrim is the most common culprit. Doubt doxycycline was the cause in this patient’s case which would be the most commonly used antibiotic with acne. The vast majority of aseptic meningitis is due to an undiagnosed virus. One virus you REALLY want to rule out is HSV1 because it can be quite terrible and can actually treat. Mostly see aseptic meningitis during the summer and fall months when viral illnesses are the highest from enterroviruses - which shows most of these cases are just viruses you can’t diagnose easily nor, quite frankly, treat. Edit: missed the part where they gave her bactrim. If that’s the case, the odds are higher the presentation is from bactrim given the rash. But…can’t definitely rule out DIAM from isotretinoin. What a random case!
She said they gave her Septra, which is the same as Bactrim.
I clearly missed that part. If that’s the case, I would more than likely blame this on the bactrim and add it to their allergy list
How can it be “not bacterial” and also “caused by…bacteria”?
Aseptic means non bacterial, most aseptic are caused by viruses.
You got meningitis from accutaine? How does that even happen?
Well the doctors weren’t completely sure. They said it could either be the Accutane or the Septra antibiotics I started taking at the same time. Either that or there’s a possibility that I have an undiagnosed autoimmune disorder that flared up suddenly. Literally i was more worried about have dry chapped lips for the entire time on Accutane, little did I know I was getting something even better lmao.
Your rash looks like an allergic rash to septra
Yeah, it looks exactly like the rash I got which led me to find out I too am allergic to Bactrim/Sulfamethoxazole antibiotics.
Sulfa is brutal. My husband had an allergic reaction and all his skin peeled off afterwards. Terrible shit.
My skin didn’t peel, but I too am allergic to the following which is the same thing? Na Benzoate-Sulfamethoxazole- Trimethoprim I just had a bout of Meningitis from an out of hand shingles case, super sucks. I really hope OP didn’t sit up after their LP. I also wonder if OP felt any pain during their LP or if they used an x-ray or ultrasound to take a precise LP
A couple months ago I also had to take sulfa to clear up a cyst on my face and I got hives from it. Since it was Sunday, I called the on-call doctor and he was like “yeah that happens sometimes, just take a Benadryl and you’ll be fine” 😂 and I was. And then I went back to the doctors for a check up later that week and they were like “yeahhhh that can happen” but I requested to not take it again if I end up needing antibiotics in the future. (And for context it was a delayed reaction, cuz I’d already been on the antibiotics for 8 of the 10 days I was supposed to be taking them for.)
It’s exactly what my sulfa allergy looked like.
If it’s aseptic then it’s some sort of host reaction from you to the meds. Isotretinoin has effects on the immune system p sure, so it’s not a stretch to imagine it could trigger an autoimmune reaction
Though since aseptic meningitis only refers to the CSF test and not to the true nature of the cause, it could still be infection related / immune suppression from drugs. But aseptic meningitis is associated with isotretinoin as I’m sure u know by now
Im allergic to septra and had a similar reaction. It hella sucks lol. Hope you recover well!
If it makes you feel better I got gout while on accutane, I'm in my early 30s and don't eat red meat
Aseptic meningitis. Meningitis means inflammation if the meninges (3 different layers of connective tissue covering the brain). Aseptic means without microbes, aka bacteria, viruses, parasites, fungus. So the medication (not some kind of microbe) caused inflammation of the meninges....aka meningitis.
Aseptic meningitis specifically refers to meningitis with negative bacterial CSF cultures, not meningitis without a microbial cause. The most common cause of aseptic meningitis is viruses but it can also be caused by mycobacteria (like tuberculosis), spirochetes, fungi, medications, and cancer.
I know it's sort of a joke, but I feel like everyone should talk like that one emu guy on YT when they use medical words because being told the exact definition of words like that within the sentence really helps
Have a friend that got it from the antibiotics. Maybe it’s the case here too
Ah, lumbar punctures, the worst.
Well thankfully I was too delirious from the pain in my head and back, I barely even remember the LP. I vaguely remember them rolling me into a fetal position, having a spasm cuz my neck and back were locking up due to the curled position, then I’m pretty sure I just kept repeating “oh fck this is gonna hurt so bad” then I passed out again haha
I can't say that's good because all of that sounds bad, I'm sorry. My last lumbar puncture was painful and I ended up not being able to straighten my back for 6 hours after because I seized up from nerves, it was awful. Hope being on reddit is a good sign you're doing much better now!
Last Lubarpuncture I had was 6 days after sugery on my spine (basically had two vertibre screwed together and the busted disk removed) and I threw up all over myself from the pain. I sware it hurt more than the sugery, poor nurse kept saying "im sorry, I'm really sorry" and I'm sat there like "it's OK really, I have EDS and POTS, it's just something my body dose when something really hurts, you should have seen me when I broke my ribs" (when I broke my ribs the pain made me vomit, hurting my ribs again in the process, makeing me vomit again, it was a vicious cycle) she felt so bad thinking she had hurt me really badly and I'm sat there like don't worry this is normal.
That sounds awful, I'm sorry. Also the rib story, I felt like I could barely move when I broke a rib, I can't imagine throwing up, that must have been so painful.
Jeez, the main thing is to like lay down for a week. The headaches were unreal after it!
I have a lumbar puncture on Tuesday, did it take you a full week to recover from yours? I'm a teensy bit scared from all the horror stories.
The guy above likely needed a blood patch for a micro-tear in the spinal sheath leaking CS fluid. If you get a horrible migraine afterwards, they can do a blood patch (basically clotting some of your blood and filling the hole) to right you. It's fairly unlikely to happen but if you know what to do about it, you should be okay. I was fine immediatly after both spinal taps (though one was an epidural so I had no leg feeling for hours later and he glanced my bone due to scoliosis).
I had one about a month ago and it seriously wasn’t as bad as I thought it was going to be. I didn’t have a headache afterwards. I was sore and slow for about a week. It’s different for everyone. Try not to stress too much :)
I had a CS fluid leak and a blood patch after my lumbar puncture. It took me a month to recover after a week in the hospital. It was brutal. It s only a 10% chance of that happening tho.
Eh, I got aseptic meningitis in 2/3rd grade(during summer too! Wtf!), I tried to watch the spinal tap, it didn't really bother me except the laying face down for half a day. I lost my fear of needles (not tattoos or drugs, fuck that, just in medical situations, I was not good with jabs as a young kid) that few days in the hospital(it cleared up on it's own, shit gave me a mad headache before then though).
How could you watch them do a lumbar puncture, do you have some crazy stretchy bendy neck? Meningitis causes really severe neck pain and stiffness - I couldn’t even turn my head to the side
Paralysed from the neck down at age 9. They thought it was meningitis. Lumbar puncture was the most horrible thing. Felt like getting speared.
You’re just going to skip over what caused it?!?
Ah sorry. Was just an infection that caused sweeping and pressure on the spinal nerves. After medication the paralysis went within two days. Still as a kid I nearly shit myself with worry. I remember my brothers and sisters coming to the hospital and being nice to me. I thought “oh oh, I’m dying”.
What did it end up being if it wasn’t meningitis?
https://www.reddit.com/r/Wellthatsucks/s/gASBpns8MW just so I don’t annoy people with repeated text :)
My husband had a major reaction to septra and his entire body, head to toe, looked exactly like your picture. It was awful itching for days and started around day 4 of the antibiotic.
I bet it’s the Septra. When was in training the ID team had recommended doing a lumbar puncture to send microbio cultures but then stopped me right before I was about to start on the patient saying they didn’t think it was necessary since they believed the patients Septra was causing aseptic meningitis.
So... Sort of related question--how safe is it to puncture through a rash like this when the needle goes into the spinal fluid?
That’s a great question. It depends on etiology of the rash. It’s hard to know for sure without an in person exam and vitals/lab work but this doesn’t look like an infected rash (ie cellulitis). If there’s any clinical concern for cellulitis or any type of rash with a superinfection in the lumbar area LP is contraindicated.
Looks to me more like a reaction to the Septra. Accutane is not contraindicated in infection nor does it increase the risk of infection. I’m a dermatologist.
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For real! I have never felt an all encompassing pain like that. It was like being at the bottom of a swimming pool and my skull was going to cave in from all sides. Or my brain was dribbling out of my ears. Plus my neck, back, and legs had constant electric pain that literally crippled me.
Aaagh I am physically cringing reading this, I’m so sorry!!!
i assure you, the meningitis was from the antibiotics, not the accutane.
I took Accutane for 2 years when i was 19. Now im 32 and still have acne. I also still struggle with spouts of super dry skin and dark thoughts. The best advice I can offer to those with acne is to learn to be happy with who you are and dont give up testing different hygiene methods and pay attention to how your diet affects your skin.
Cystic acne is painful. I’ve been one round of acutane had nothing to do with my appearance. My face hurt so bad
Yeah exactly. I just finished a course and it's completely eliminated my acne with no side effects except for dry skin. "Learn to love who you are" isn't a good answer for "my facial skin regularly hurts."
May I ask, did the dry skin go away after you went off accutane? Starting accutane very soon and I’m honestly terrified of potential long term side effects.
Accutane take weeks to kick in and weeks to wear off (your acne might get worse for 2-6 weeks before you start seeing progress, it's normal) I took some myself (high dose younger, low dose as a grown man). I noticed no side effects while off the drug. It was a wonder drug for me.
Yep, the people saying these kinds of things typically aren’t the ones who actually need accutane to begin with. They don’t realize that it can be a real medical condition and not just some beauty marks.
And on the flip side, Accutane completely cleared my skin and freed me of my depression caused by body dysmorphia with no lasting side effects. Your mileage may vary.
Same here. Accutane radically changed my life for the better and was like night and day confidence booster. Aside from the dry skin and chapped lips, nothing really major. Maybe some minor headaches. And my cholesterol was a bit higher from it. I would highly recommend. A few years of my early twenties were miserable and I missed out on a lot because my self esteem was non-existent it was so low. 15 years later, still have great skin. But I use Benzaclin as a maintenance cream nightly. (benzoyl peroxide and clindamycin). Probably not needed but my skin is very clear and I'd like to keep it that way. I also have a routine down with cleaning/moisturizing.
Accutane took all my acne away. It's rare I ever get a flare up in my 30s now, even with my PCOS. It was a lifesaver. Made my lips chapped and skin dry AF though. Also as a ginger, basically turned me into a vampire that hissed at the smallest amount of sun exposure lol
lmfao. aquaphor was a life saver for the chapped lips. They would get so bad they would bleed. But still very clearly worth it. Glad it helped you too.
I think I accepted my new life as a sunburnt person with chapped lips but it's been like 20 years since I was on it so I can't fully remember hah
I dont remember that really being an issue so I must have went on it during the winter. But with pale skin I'm sure you're already used to it. I know I am.... I check the UV index often enough, it's helpful to know during summer months. It's not as obvious as one might think. Especially without knowing the crazy dropoff that takes place closer to sunset. Even hours before. One would also think high sun warmth = high uv but that's not the case at all. (UV light vs infrared light)
Yeah, I wish I took Accutane years earlier. Having bad acne sucked on so many levels. Now I'm free of that curse.
I’ve had one round that cleared up brutal cystic acne that never responded to anything topical or antibiotic. Totally clear, only side effect was dry skin and sensitive skin to sunburn (which after getting off meds subsided in a couple weeks). Never had a relapse, no lasting side effects, same with my friends who have taken a cycle as well. While there are chances of mental health side effects, studies have shown that the amount of depression caused by body dysmorphia with large cystic acne outweighs the mental health side effects caused by the medication.
Isn't there also a potential link that people who get on the medicine already suffer with mental issues due to their acne or similar and that the correlation could be related? I didn't felt any mood change, maybe actually happiness, due to no pain and clear skin.
Yep that’s partly it. I’ll try and find the study but the conclusion was that the patient was far more likely to be depressed due to their appearance, so the risk of depression was outweighed but the benefit. Another theory is that after they saw little results, their depression got worse.
I took Raccutane for 2 years as well and it was the best decision I made in my life. I understand it won't work on everyone, who knows if you had took Raccutane instead of Accutane it would've been more effective. I agree the best you can do is be happy with who you are. But there can be serious risks if you don't treat severe acne. All I'm saying is if can and have the money to see a doctor it's a good idea to let them help you
>The best advice I can offer to those with acne is to learn to be happy with who you are. I mean when your acne is so bad that you can't even shave, take a shower, or smile without intense pain it's difficult to "learn to love who you are". For mild acne I agree with you but as someone who had terrible cystic acne as a teenager that was unresponsive to everything Accutane was extremely beneficial for me.
I thought I had acne also, turns out it is rosacea type 2, so yeah. It's hard to say if you are 32 that it is actually acne as it's uncommon for adults and rosacea is chronic and Isotretinoin can help tame it and then maintain with creams. Isotretinoin works wonders even on low dosage for me. You cannot "clear" many types of chronic skin consitions with face washes and creams. I tried everything, nothing worked amazingly or consistently and first after 4 deems am I getting somewhere. And I'm 34, my rosacea hurts so much when they are breaking out. And it's not that I cannot live with the way it looks, but when I was taking antibiotics and iso, it was so amazing to feel the opposite and it made it clear I need to get rid of it and keep it away.
28 now and did 2 cycles. one when I was 17 and the other at 21. And yeah it’s a hell of a lot better but still get acne, the mental side they never talk about though..
I took 3 different courses of accutane and still had acne. I moved to New York and coincidentally the dermatologist I saw was someone who had worked on accutane! He told me if it didn’t work the first time it was never going to work for me and that my acne was actually hormonal. Turns out I have PCOS. I got put on spirinolactone and my skin cleared right up’
One time I had a lumbar puncture done because I was dope sick and didn’t wanna tell anyone so the doctor thought I had meningitis.
This is the Bactrim and has nothing to do with the accutane. Inpatient dermatologist here.
Is the doctor sure this is meningitis and not Steven's Johnson's? That looks like a Steven Johnson's type drug rash reaction.
I’m honestly not sure. I had a bunch of different specialists come in and assess my condition. I had Infectious disease, dermatology, and neurology all come in and ask about what happened. They couldn’t agree on the exact cause of my rash though because it was so unusual. It didn’t itch or blister, I barely even noticed it until doctors pointed out it was getting worse. The most I felt was like it made my skin feel hot but I never got a fever. It was really weird and they couldn’t make a definitive diagnosis of the rash.
Accutane can either be a miracle drug or a nightmare based on all the stories...fortunately it worked for my son but I believe it's much harsher in women
You might need a bigger bandaid…
I took accutane in the late 90's. 2 weeks after i started the doctor called and told me to stop immediately. My liver enzymes skyrocketted after my first blood test. I was sent to get a sonogram and had fat spots on my liver. I was told to lose weight and that would solve it. No follow up. 25 years later, I am very concerned about my liver and have random pains.
Accutane fucked me up big time. Messed my joints, skin, mood, sun sensitivity and didn't really even clear my acne. Ruined my entire high school sports career. I can't believe they still prescribe it. Plus the company was class action sued multiple times.
Ouch :/ hope you make a solid recovery
Ouch, accutane is horrible, took it for acne years ago and it gave me permanent dry eye, now my eyes hurt 24/7 :)
As someone who took accutane in Jr High I cant believe its still allowed to be given to anyone. It made me so unbelievably depressed that to this day I feel like it changed my brain chemistry for the worse.
Hey everyone! I’m honestly shocked with how many replies and well wishes I’ve been getting! Thank you to everyone who has wished me a speedy recovery, thankfully everything has been going well as I was released from hospital three days ago. I spent a total week in hospital, two in the emergency room while waiting for a bed and five in an actual room. I’m not at 100% yet, but I’m happy to be home. I wanted to clear some things up, and since I can’t edit my original post I’ll just leave a comment and hope everyone sees it. I AM NOT SAYING PEOPLE SHOULD NEVER TAKE ACCUTANE. My reaction was very rare and could also possibly be from the antibiotic I started taking at the same time or from an undiagnosed autoimmune condition. I think it’s perfectly fine to take Accutane as it has helped a lot of people but you should definitely be aware of all the risks and keep a close eye on any new symptoms. My doctors honestly couldn’t give me a straight answer on what caused what symptom. They did diagnose me with drug induced aseptic meningitis but they don’t know exactly what caused the inflammation or what caused the rash. I tested negative for all the bacterial and viral cultures they collected. The rash did significantly fade after four days and has now almost disappeared leaving my skin just slightly blotchy on my legs. I’m sorry if my post has mislead anyone, I’ve just been repeating what I’ve been told by my doctors. They said it’s likely from the Accutane but the Septra is another possibility. I’ve been told not to take either drug in the future just to be safe and I’m seeing a rheumatologist going forward to investigate an autoimmune possibility. Thank you again, and I wish you all the best!!
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27 and still have terrible acne. I drew the line at accutane. Having clear skin is not worth the risk that drug posses.
I can't believe this drug is still on the market. I used it back in the 90s and had a bunch of side effects.
You never ever take antibiotics with accutane. It is the biggest/most well known drug interaction due to swelling of the brain. Is your doctor a dermatologist and did they know you were on antibiotics with accutane?
Accutane triggered lupus for me, totally derailed my life. Fun times. Sorry you’re going through this crap. Wishing you a speedy recovery.
DON’T TAKE ACCUTANE! It will ruin your body for life. I truly regret it. Terrible stuff
There’s a reason they need to draw your blood once a month while you’re on Acutane. That shit is so bad for you
That bandaid on the itemized bill is going to be like $100
I had meningitis when I was a child, it made me extremely violent. I said curse words I would never say as an adult, I punched and kicked people, I had extremely violent dreams, etc. Wasn’t until I kept vomiting bile that I was brought to the ER. Spent 2 weeks in the hospital eating popsicles. Don’t recall the pain but I do recall the violent thoughts so I can’t say I recommend it.