10 ms·

My son is almost through Topical Steroid Withdrawal (TSW). In this case he was misdiagnosed as having Eczema, and put on topical steroids from about 2 months o

My son is almost through Topical Steroid Withdrawal (TSW). In this case he was misdiagnosed as having Eczema, and put on topical steroids from about 2 months old. See http://www.red-skin-syndrome.com/ http://www.red-skin-syndrome.com/ https://www.itsan.org/ https://www.itsan.org/ And my favorite, a video that finally opened my eyes on the issue. https://m.youtube.com/watch?v=PpW4VV2bsD8&t=19s https://m.youtube.com/watch?v=PpW4VV2bsD8&t=19s My two year old son has been steroid free for just about three months now and is finally looking like a healthy young boy. We're both very happy and very angry. Had we not sought out our own solution we'd have him on yet stronger steroids today as that is the 'standard of care'. From my perspective, it's hard to put any faith in the FDA at all.

AndrewBissell 5y ago
On Twitter or Facebook this is where someone would link the New Yorker cartoon with the guy turning to his wife from the computer and saying, "look honey, I found something all the world's top scientists and doctors missed!" When my daughter was very young her doctors tried to give her an oral antibiotic for a little infected sore she had on her finger. At the time I was much more of a "just do what the doctors say!" type, but luckily my wife insisted we handle it on our own with topical antibiotics instead. Now, knowing more about all the harms caused by antibiotics I'm extremely grateful we didn't just slavishly follow the doctors' advice. In seriousness, good job looking out for your son.
- reedjosh 5y ago
  Thank you. I really appreciate this. It's been rough losing faith in what is basically not just the medical establishment, but kinda also society writ large. I guess at least I can take comfort in the self confidence gained through experience, but now all I see is in question. Hopefully I can aim my new found confidence at solving some of the issues that now seem obvious to me.
- mthoms 5y ago
  That’s not what that comic means.
- ad404b8a372f2b9 5y ago
  That's what I find so frustrating about these comics and the general narrative about medical care and procedures. Anyone who has had to deal with doctors regularly knows how little they should be trusted. There are those who will diagnose any chronic health issue as anxiety, those that prescribe life-destroying drugs for a scratch, those that dismiss patients with serious medical conditions as drug-seeking or "being whiny". That's only worsened by the widespread arrogance in the profession that makes them speak with unwavering confidence about things there is little certainty about. Good patient care can only be achieved when the family is well informed and ready to get involved and push back. If you go on any disability forum, you'll find hundreds of testimonies to that effect.
  - eurasiantiger 5y ago
    There are loads of psychiatrists who will ask you what you want prescribed. I’m not too sure how they are different from drug dealers.
  - thayne 5y ago
    Reading a few articles on the internet doesn't make you well informed though. Certainly not well informed enough to accurately diagnose medical conditions. It's a doomed if you do, doomed if you don't situation.
    - Saptarishi 5y ago
      I think the commenters point was not about people reading articles on the internet and feeling that they've got a better understanding than doctors. It's about medical professionals thinking that they are infallible.
      - thayne 5y ago
        Sure. And I think that that leads to people distrusting doctors, and trusting things they read on the internet.
        5y ago
- erosenbe0 5y ago
  The harms of antibiotics include an immense reduction in child mortality and morbidity from strep, persistent ear infections, meningitis, tuberculosis, pneumonia, gangrene, and the list goes on.
  - AndrewBissell 5y ago
    Yeah and our child had none of those things. When needed, oral antibiotics can be a lifesaver. When overprescribed they are wrecking people's gut biomes and causing all kinds of issues, some of which can persist for a lifetime.
    - erosenbe0 5y ago
      I would agree you made a prudent choice but it does seem like a drop in the bucket as any kind of exposure to modern lifestyle in childhood correlates with similar issues of perturbed microbiome, autoimmune disease, reduced fertility, and metabolic syndrome. Exhaust particulate, herbicides, plasticizers, PCBs, heavy metals, and the like are universal. Even the background level of 410ppm CO2 which a child can never escape is extremely unnatural.
- thehappypm 5y ago
  I'm curious -- OTC antibiotic ointments are easy to get access to and downright obvious to use when there's a skin injury. Did you not try that before going to the doctor? If I'm the doctor, the risk/reward for me is to overdo antibiotics and make sure to kill infections with them, if the parent has come so far as to come see me. It's risky to say "use an ointment" if there's even a slim chance it doesn't work.
  - AndrewBissell 5y ago
    Yes, we had tried those and also prescription mupirocin and none had worked by themselves. We wound up having to lance the infection on her finger daily and treat it with the mupirocin for a couple of weeks. Her whole hand was in a bandage for that time, and some of the doctors were telling us she might lose part of her finger if it wasn't treated.
    - thehappypm 5y ago
      I'm not sure I follow -- you tried topical antibiotics, it didn't work, you went to the doctor who recommended an oral antibiotic, you ignored that and tried a different topical antibiotic and it worked? What's your point exactly?
nradov 5y ago
Your quarrel is not with the FDA. They approved topical steroids as safe and effective, which was correct. But the FDA generally can't control how physicians use those drugs. If a doctor misdiagnosed your son or prescribed improper treatment then you should file a complaint with your state medical licensing board.
- Loughla 5y ago
  Also, not to victim blame at all, but - any medicine, regardless of whether it's over the counter or not, needs to be discussed with a doctor. That's why they literally have that label on everything you buy, and warning about using it on your own, either in the short- or long-term, depending on the specific medicine. Just because people assume it's safe, doesn't mean it's safe, and is nobody's fault but their own for not reading the actual instructions and safety labels. It's medicine, for Christ's sake, even if relatively benign looking. It has the intent on changing something about your body. Why do people think you can just go to the corner store and take whatever you want without actually thinking about it?
  - candiodari 5y ago
    I think it's established that in the opioid crisis, all medication was prescribed by docters, for 2 important reasons: 1) pressure from patients (and sometimes the doctor themselves, too). What is wrong with drugs? I mean, we can all agree that there's a minority in society that doesn't see the problem here. There are plenty of medical people in that minority. 2) pain medication "cures" everything (cheaply!). Can't diagnose what's wrong? Opioids cure it! Not really sure if anything is wrong at all? Opioids make patient happy! Patient scared of treatment? Opioids cure the problem without the treatment! Patient can't pay for real treatment? Opioids cure it!
erosenbe0 5y ago
I'm not clear on what this has to do with the FDA? Would you want the tubes and boxes to have stronger warnings? Other than that it comes down to doctors giving appropriate diagnosis and protocol. There isn't really a scandal in terms of someone cashing out on the overprescription of lowish cost topicals .
- reedjosh 5y ago
  I'd like for the FDA to either... Not allow Hydrocortisone based ointments over the counter, and to include two week addiction warning labels. Or... I'd like them to get out of drug regulation at all so people aren't engendered with a false sense of safety and are allowed to make up their own minds without a rent seeking gatekeeper (doctors). That said, I think, as you suggest, my problems may be more with the medical system and authority in general.
  - onethought 5y ago
    In Australia Topical Steroids are not over the counter. I'm always surprised by how many things I can get over the counter in the US. Here we need a Drs. prescription for pretty much anything stronger than a vitamin or mild painkiller.
    - robbiep 5y ago
      Depending on the strength, Yes they are
      - onethought 5y ago
        Which ones?
        robbiep 5y ago
        Derm aid is a widely known trade name available in 0.5% or 1% hydrocort formulations on the shelf of any pharmacy you walk into
refurb 5y ago
TSW seems like it's not very well supported by data? I mean if you are treating a rash with a steroid, one shouldn't be surprised it comes back if stop using it? That said, topical steroids beyond 1% hydrocortisone are powerful drugs that can have long-term side effects (thinning of skin). But on the flip-side, there are often no alternatives.
- reedjosh 5y ago
  >TSW seems like it's not very well supported by data? How would you design an ethical experiment to get said data? Particularly considering the timespans involved. Please review the following case study(s). https://www.medicaljournals.se/acta/download/10.2340/00015555-3144/ https://www.medicaljournals.se/acta/download/10.2340/0001555... In some of the children it took over two years, but every child was left with normal skin or mildly itchy skin in their inner elbows or behind their knees. Nothing like the dehibilitating steroid withdrawal these children and my son went through.
  - refurb 5y ago
    Your reference are case reports and even has this disclaimer "While TSW was considered the most likely diagnosis in these children, confirmation was not possible partly due to the fact diagnostic criteria for TSW did not exist when they were first assessed, and partly due to the inability to completely exclude all differential diagnoses". And of course you can ethically confirm this data through a clinical trial. Enroll kids with specific diagnoses, treat half of them with steroids, half without and compare outcomes. I'm not saying TSW doesn't exist, but the evidence for it doesn't look very conclusive.
JamesBarney 5y ago
I'm happy your son is doing better. But the FDA isn't your parent, getting diagnoses are hard, and it's up to you and your doctor to decide what treatment is best, not the FDAs. The FDA is just a big organization that regulates advertising, and what can be prescribed. Every drug has risks, and the only way to ensure the FDA doesn't approve drugs that will hurt people is to make sure they never approve any drugs.
cafard 5y ago
In my 20s, I used to run through the woods fairly often, and a couple of times a year would get careless and get a rash from poison ivy. A topical steroid usually helped. I'm sorry to hear about your son, though.

AndrewBissell 5y ago

On Twitter or Facebook this is where someone would link the New Yorker cartoon with the guy turning to his wife from the computer and saying, "look honey, I found something all the world's top scientists and doctors missed!" When my daughter was very young her doctors tried to give her an oral antibiotic for a little infected sore she had on her finger. At the time I was much more of a "just do what the doctors say!" type, but luckily my wife insisted we handle it on our own with topical antibiotics instead. Now, knowing more about all the harms caused by antibiotics I'm extremely grateful we didn't just slavishly follow the doctors' advice. In seriousness, good job looking out for your son.

reedjosh 5y ago
Thank you. I really appreciate this. It's been rough losing faith in what is basically not just the medical establishment, but kinda also society writ large. I guess at least I can take comfort in the self confidence gained through experience, but now all I see is in question. Hopefully I can aim my new found confidence at solving some of the issues that now seem obvious to me.
mthoms 5y ago
That’s not what that comic means.
ad404b8a372f2b9 5y ago
That's what I find so frustrating about these comics and the general narrative about medical care and procedures. Anyone who has had to deal with doctors regularly knows how little they should be trusted. There are those who will diagnose any chronic health issue as anxiety, those that prescribe life-destroying drugs for a scratch, those that dismiss patients with serious medical conditions as drug-seeking or "being whiny". That's only worsened by the widespread arrogance in the profession that makes them speak with unwavering confidence about things there is little certainty about. Good patient care can only be achieved when the family is well informed and ready to get involved and push back. If you go on any disability forum, you'll find hundreds of testimonies to that effect.
- eurasiantiger 5y ago
  There are loads of psychiatrists who will ask you what you want prescribed. I’m not too sure how they are different from drug dealers.
- thayne 5y ago
  Reading a few articles on the internet doesn't make you well informed though. Certainly not well informed enough to accurately diagnose medical conditions. It's a doomed if you do, doomed if you don't situation.
  - Saptarishi 5y ago
    I think the commenters point was not about people reading articles on the internet and feeling that they've got a better understanding than doctors. It's about medical professionals thinking that they are infallible.
    - thayne 5y ago
      Sure. And I think that that leads to people distrusting doctors, and trusting things they read on the internet.
      - 5y ago
erosenbe0 5y ago
The harms of antibiotics include an immense reduction in child mortality and morbidity from strep, persistent ear infections, meningitis, tuberculosis, pneumonia, gangrene, and the list goes on.
- AndrewBissell 5y ago
  Yeah and our child had none of those things. When needed, oral antibiotics can be a lifesaver. When overprescribed they are wrecking people's gut biomes and causing all kinds of issues, some of which can persist for a lifetime.
  - erosenbe0 5y ago
    I would agree you made a prudent choice but it does seem like a drop in the bucket as any kind of exposure to modern lifestyle in childhood correlates with similar issues of perturbed microbiome, autoimmune disease, reduced fertility, and metabolic syndrome. Exhaust particulate, herbicides, plasticizers, PCBs, heavy metals, and the like are universal. Even the background level of 410ppm CO2 which a child can never escape is extremely unnatural.
thehappypm 5y ago
I'm curious -- OTC antibiotic ointments are easy to get access to and downright obvious to use when there's a skin injury. Did you not try that before going to the doctor? If I'm the doctor, the risk/reward for me is to overdo antibiotics and make sure to kill infections with them, if the parent has come so far as to come see me. It's risky to say "use an ointment" if there's even a slim chance it doesn't work.
- AndrewBissell 5y ago
  Yes, we had tried those and also prescription mupirocin and none had worked by themselves. We wound up having to lance the infection on her finger daily and treat it with the mupirocin for a couple of weeks. Her whole hand was in a bandage for that time, and some of the doctors were telling us she might lose part of her finger if it wasn't treated.
  - thehappypm 5y ago
    I'm not sure I follow -- you tried topical antibiotics, it didn't work, you went to the doctor who recommended an oral antibiotic, you ignored that and tried a different topical antibiotic and it worked? What's your point exactly?

nradov 5y ago

Your quarrel is not with the FDA. They approved topical steroids as safe and effective, which was correct. But the FDA generally can't control how physicians use those drugs. If a doctor misdiagnosed your son or prescribed improper treatment then you should file a complaint with your state medical licensing board.

Loughla 5y ago
Also, not to victim blame at all, but - any medicine, regardless of whether it's over the counter or not, needs to be discussed with a doctor. That's why they literally have that label on everything you buy, and warning about using it on your own, either in the short- or long-term, depending on the specific medicine. Just because people assume it's safe, doesn't mean it's safe, and is nobody's fault but their own for not reading the actual instructions and safety labels. It's medicine, for Christ's sake, even if relatively benign looking. It has the intent on changing something about your body. Why do people think you can just go to the corner store and take whatever you want without actually thinking about it?
- candiodari 5y ago
  I think it's established that in the opioid crisis, all medication was prescribed by docters, for 2 important reasons: 1) pressure from patients (and sometimes the doctor themselves, too). What is wrong with drugs? I mean, we can all agree that there's a minority in society that doesn't see the problem here. There are plenty of medical people in that minority. 2) pain medication "cures" everything (cheaply!). Can't diagnose what's wrong? Opioids cure it! Not really sure if anything is wrong at all? Opioids make patient happy! Patient scared of treatment? Opioids cure the problem without the treatment! Patient can't pay for real treatment? Opioids cure it!

erosenbe0 5y ago

I'm not clear on what this has to do with the FDA? Would you want the tubes and boxes to have stronger warnings? Other than that it comes down to doctors giving appropriate diagnosis and protocol. There isn't really a scandal in terms of someone cashing out on the overprescription of lowish cost topicals .

reedjosh 5y ago
I'd like for the FDA to either... Not allow Hydrocortisone based ointments over the counter, and to include two week addiction warning labels. Or... I'd like them to get out of drug regulation at all so people aren't engendered with a false sense of safety and are allowed to make up their own minds without a rent seeking gatekeeper (doctors). That said, I think, as you suggest, my problems may be more with the medical system and authority in general.
- onethought 5y ago
  In Australia Topical Steroids are not over the counter. I'm always surprised by how many things I can get over the counter in the US. Here we need a Drs. prescription for pretty much anything stronger than a vitamin or mild painkiller.
  - robbiep 5y ago
    Depending on the strength, Yes they are
    - onethought 5y ago
      Which ones?
      - robbiep 5y ago
        Derm aid is a widely known trade name available in 0.5% or 1% hydrocort formulations on the shelf of any pharmacy you walk into

refurb 5y ago

TSW seems like it's not very well supported by data? I mean if you are treating a rash with a steroid, one shouldn't be surprised it comes back if stop using it? That said, topical steroids beyond 1% hydrocortisone are powerful drugs that can have long-term side effects (thinning of skin). But on the flip-side, there are often no alternatives.

reedjosh 5y ago
>TSW seems like it's not very well supported by data? How would you design an ethical experiment to get said data? Particularly considering the timespans involved. Please review the following case study(s). https://www.medicaljournals.se/acta/download/10.2340/00015555-3144/ https://www.medicaljournals.se/acta/download/10.2340/0001555... In some of the children it took over two years, but every child was left with normal skin or mildly itchy skin in their inner elbows or behind their knees. Nothing like the dehibilitating steroid withdrawal these children and my son went through.
- refurb 5y ago
  Your reference are case reports and even has this disclaimer "While TSW was considered the most likely diagnosis in these children, confirmation was not possible partly due to the fact diagnostic criteria for TSW did not exist when they were first assessed, and partly due to the inability to completely exclude all differential diagnoses". And of course you can ethically confirm this data through a clinical trial. Enroll kids with specific diagnoses, treat half of them with steroids, half without and compare outcomes. I'm not saying TSW doesn't exist, but the evidence for it doesn't look very conclusive.

JamesBarney 5y ago

I'm happy your son is doing better. But the FDA isn't your parent, getting diagnoses are hard, and it's up to you and your doctor to decide what treatment is best, not the FDAs. The FDA is just a big organization that regulates advertising, and what can be prescribed. Every drug has risks, and the only way to ensure the FDA doesn't approve drugs that will hurt people is to make sure they never approve any drugs.

cafard 5y ago

In my 20s, I used to run through the woods fairly often, and a couple of times a year would get careless and get a rash from poison ivy. A topical steroid usually helped. I'm sorry to hear about your son, though.