8 ms·

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy

• nostromon 10y ago
  Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can feel it coming on and manage it with a steroid cream, but now my ears, eyes, nose, and other parts of my body have similar symptoms. The worst part is that it's incredibly painful, to the point where I have to leave work, but really doesn't look that bad, so it's hard for other people to understand what's happening. I've been to 5 different doctors, a general internist, 2 dermatologists, an ENT, a gastroenterologist, and have gotten 5 different diagnosis. It feels pretty lonely, but I'm glad to see your story here, and that this article is shining more light on these kind of ailments.
  • uberduber 10y ago
    I have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.
    • modulusprime 10y ago
      You and everyone else in this thread should know that "immunologist" is an existing specialty. Find one. Make sure it's not just an allergist, but an academic type with multi-system hospital privileges.
      • daegloe 10y ago
        +1 for the Immunologist recommendation. That's where everything finally came together for me.
      • uberduber 10y ago
        Any tips on finding one? I'm assuming you don't mean infectious disease specialist. I'm familiar with most of the allergists in my area and none are immunologists.I just did a search on google and I can't seem to find any in SoCal. Are they clustered somewhere in the country? Like how all the geneticists seem to be on the east coast, and the limited geneticists here all seem to be in children's hospitals.
• ww520 10y ago
  Some good news. There are dozens of new drug approved by FDA addressing the auto immune illness. The problem is they are expensive, thousands of dollars per shot for every couple weeks. Hopefully the competition will drive the cost down.
  • throwaway9991 10y ago
    Dozens of new drugs, like what?
  • Nuzzerino 10y ago
    Do you know the names of any of these?
    • atombender 10y ago
      I assume they're referring to biologics, another name for monoclonal antibodies such as adalimumab (Humira), infliximab (Remicade), etanercept (Enbrel), ustekinumab (Stelara), etc. Most of these are TFA inhibitors, but there are some newer ones that target other things, such as ixekizumab (Taltz) and brodalumab (Siliq), both approved very recently. Common to biologics is that they're all fairly new, so their long-time safety is not established. They are more precisely targeted than immune-system therapies such as methotrexate (a chemotherapy drug that also works on psoriasis), but they do interfere with your immune system in scary ways. There's evidence that they increase the risk of cancer as well as other diseases. Brodalumab has been associated with an elevated risk of suicidal ideation and behavior (!), so there's that.
      • oligopoly 10y ago
        > There's evidence that they increase the risk of cancer as well as other diseases All drugs can have negative effects, but in the end it comes down to what's the risk/reward ratio. If someone is in constant pain and barely can do anything it really doesn't matter if you die 5 or 20 years down the road to cancer when you get x years to live somewhat normal life. Life in extreme suffering can be worse than death. This is based on personal experience.
• coldtea 10y ago
  >2 years later I grew giant, hard skin patches on my knees. My fingernails started detaching. I could live with it, although as a gym rat I needed to make sure my knees were wrapped since doing anything on my knees ripped the skin open. Shouldn't you at that point, or at least now, go to the doctor, or several doctors, again? It's not the "3 months for the appointment" that concern me as much as the 2 years with increased symptoms.
  • orbitur 10y ago
    I skipped over it but I did go back to a GP. Got more prescriptions for hydrocortisone+dovonex, and that if it should get significantly worse, to line up a referral to a derm. After that, I had a relatively stable 5 years where my fingernails cycled and my knees and scalp just persisted at the same level. I hesitated going any more since he didn't seem to care all that much and again, I could live with it. It was workable.
• 55555 10y ago
  Eat an Autoimmune Paleo diet for a month. It works very well for me and a lot of other people.
• lnanek2 10y ago
  Sounds like you've tried the topical approach. Doctors can also prescribe systemic immunosuppressant solutions as well, though. Often orally. You may be ready for that step. Even then, there's another step past that with drugs that can only be injected, like biologics (often something like an antibody that shuts down the human inflammation system). There are big trade offs in expense, delayed action, side effects, etc. in all these, so don't feel bad about starting out with topical. It was worth a try, as they say.
• daegloe 10y ago
  My doctor in NYC was the first to bring to my attention the emerging link between autoimmune disease and microorganisms. After 20 years of managing with medicine and hitting rock bottom 2 years ago, he encouraged me to consider drastically altering my diet. I started eating autoimmune-paleo (like the author) and anti-fungal. The improvement has been dramatic and life changing. I'm now off all medication. I still have a bad day every now and then, and I may need to revisit the meds at some point down the road. But I'll tell ya, after years of feeling hopeless, it's amazing to take control and regain some sense of normalcy. If you haven't examined your diet, I would strongly encourage you to do so. Please feel free to reach out to me using the email address in my profile. That goes for anyone here.
  • alexandersingh 10y ago
    I want to echo this advice. One of my closest friends was diagnosed with Crohn's Disease in his teens, having surgery not long thereafter. He began researching for ways to get it under control which led him to anecdotal evidence on the benefit of adopting a revised diet. He has been vegan for almost a decade and has had no major problems since.
  • laughfactory 10y ago
    Dr. Mercola swears by the eating "pure" approach to solving many autoimmune diseases: no prepared food, no refined sugar, food made from scratch from the highest quality ingredients (organic, or as close to it as you can get). One of these days when my arthritis gets too bad I'm going to give it a shot. It's expensive, and a massive change in lifestyle (no more fast food! Or restaurants!), but I can see why it'd be so effective.
    • nisa 10y ago
      This one? https://www.psiram.com/en/index.php/Joseph_Mercola https://www.psiram.com/en/index.php/Joseph_Mercola Watch out! Looks like a scam artist that sells voodoo.
    • smohare 10y ago
      Mercola is one of the worst promoters and profiteers of pseudoscience. https://www.google.com/amp/scienceblogs.com/insolence/2012/08/03/15-years-of-promoting-quackery/amp/ https://www.google.com/amp/scienceblogs.com/insolence/2012/0... Here Mercola is ranked in the same "pure garbage"category as the Food Babe. http://www.nature.com/news/science-journalism-can-be-evidence-based-compelling-and-wrong-1.21591 http://www.nature.com/news/science-journalism-can-be-evidenc...
• tbabb 10y ago
  Probably the most common skin condition in humans is https://en.m.wikipedia.org/wiki/Dermatophytosis https://en.m.wikipedia.org/wiki/Dermatophytosis , aka ringworm, aka athelete's foot. I'm guessing by this point you've eliminated that as a possibility by treating with over the counter topical antifungals?
• throwaway83434 10y ago
  Mine started when I was 28, at the inside my left eyebrow, then my left eyelid. Then also my scrotum and then my scalp. STD tests negative. Dermatologist said "seborrheic dermatitis" and gave me a shampoo. Spreading to my elbows and knees it finally presented, and was diagnosed, like classic psoriasis. Lulls and flares. Topical medicine was like a treadmill, barely containing what I had and not preventing any new areas. Then mild fatigue began with the flares. Hard to get up some days. Reminded me of the major depression I had conquered in a previous life. Blood tests were fine. Then knee pain. "Just arthritis - you're 31 but getting older." Get some orthotics, do some PT. Tailbone pain. Fingers too stiff to get dressed. How much Naproxin can I take safely? Orthopedists just thinking of ways to treat pain - killing nerves or opioids. The cyclic nature makes it so that just as it's getting unbearable, or when I can finally see a new doctor, everything is pretty much fine. A new dermatologist finally suggests I see a rheumatologist that it could be PA. Looked for the best in my region, did a lot of tests and at least I finally had a name for this. Psoriatic Arthritis. Took Otezla which helped my joint pain, gave me a lot of migraines, and seemed to be a multiplier for the topical medication, but after 9 months it was not keeping up with the flares. Now I'm taking Humera injections instead for the last 3 months. My skin is almost clear and I haven't had any flare ups. The potential side effects are scary. Hoping to become more informed and find some alternatives to move to. For the first time in 8 years I feel almost normal, but my hunt is not over. Right now I've made a deal with the devil for some normalcy - I believe a lifetime of this medicine could kill me. It would also cost $33,000 a year without my great job and insurance. The article's point that an umbrella autoimmune specialist is needed is so true. For me the closest I came was my rheumatologist - she knew more about psoriasis than any of the dermatologists I've been to. Good luck on your journey.
• sungam 10y ago
  There are now very effective treatments for psoriasis to the point that most patients can be clear or nearly clear of the disease. These range from UVB light therapy to drugs such as methotrexate and ciclosporin and a growing number of monoclonal antibodies such as adalimumab. Clearly these treatments do have some small risk attached so there is a trade off between how greatly the psoriasis is concerning you and the (small) potential for side effects. You can discuss this trade off in detail with your dermatologist. COI: Dermatologist
  • pacaro 10y ago
    While YMMV, from a patients perspective, with severe psoriasis and psoriatic arthritis, you want to get to biologics as quickly as your healthcare system (or budget if you have fu money) will allow. Insurance companies love methotrexate because it is cheap. It has a far higher NNT than the biologics, is less effective at clearing psoriasis, and has horrible side effects.
• helen842000 10y ago
  From what I've seen of psoriasis and psoriatic arthritis doctors will prescribe basic emollients and moisturisers but do little to find long term cures on an individual basis. The best results I have ever seen in getting rid of psoriasis have been sunlight and enstillar foam. Almost to the point of complete repair. It is important to note what flares things up for you, stress is a huge factor in severity of psoriasis, diet (red meat, dairy, sugar) also can really impact it. Keep searching for those improvements and share your results.
• spraak 10y ago
  I encourage you to try RAW medical cannabis. The precursors in the raw plant to the cannabinoids that get you high, such as THC, are the acid form, such as THCA. They don't get you high but have been very pain relieving for my wife's constant inflammation. The heated form (where THCA is converted to THC) is also helpful, but id you really dont want to be high, find strains that are low in THC/A and richer in e.g. CBD/A Also it can be done at a low temperature in the oven or in a canning jar on the stove (called decarboxylation). I don't know your pain but it's been super helpful for my wife.
• jfoutz 10y ago
  Yup. Plaque psoriasis here. Started on my elbows when i was 18ish. Now it's pretty much everywhere, but hands and face are all that's visible in public. The treatment ladder is pretty interesting. UVb is step one, i always felt a little silly about going in to the dermatologist for a tan. That had no noticable effect for me, but it does help some people. The topical cremes are fairly effective for me, but it's tough to get pharmacies to give me enough. They show up with a little tube, and i have to explain that's like 3 days worth - covering the whole body 2x a day takes, like, a lot. I need nine more and i'll see you in a month buddy. And of course they thin the skin. I try not to overtreat, no creme if there's no redness. but i'm sure there are spots with consequences. The generalized immune suppressants are pretty scary to me, 20 years of methotrexate seems untenable. I could see perhaps a short term 3 months ish run to get it under control, then touch up with the cremes. I like the idea of the biologics. humera, stelara and enbril, are the big ones i think. narrowly targeting just the inflammation response part of my immune system seems a little less risky than the broad suppression of cancer drugs. I dunno. it sucks. I try to use the lightest touch to get by in the hope that something better will come along, without doing too much damage right now. Talk to your derm, of course, but for me just a really good moisturizing creme a few times a day will soften up those hard patches so they don't crack so easy. I try to keep up with the vanity treatments, hands and face, to banish the redness all the time. I tend to not worry about the rest until it gets pretty itchy - moisturizer helps keep the itching down quite a bit for me. Anyway, i go through phases. I'm sure this summer i'll try to hit everything hard for two solid months. Maybe i can get back to a casual maintenance mode. it sucks. you're not alone. I'm not exactly in your same boat, i'm just hoping it does not spread to my joints. At that point i think i'd have to go with a cancer drug or injectable. hopefully there will be better drugs, or the current drugs will be better understood, before that's an issue. It sucks it can't be fixed. My least effort to make this tolerable probably isn't ideal, i'm probably over weighting the risk of side effects and under weighting the damage done to my skin by just letting things go. but you know, it's a thing. it's a thing i can't really do much about so i try not to let it dominate my life. There have been times when it really controlled my thoughts and fears. Those times suck, you'll get through them.
• ChristopherM 10y ago
  Hi orbitur, I too used to suffer from allergies, psoriasis, arthritic joint pain. But I cured mine without any drugs. Doctors were of absolutely no help whatsoever. They have a better living through chemistry approach to "healthcare". I figured out the root cause through many years of suffering and experimenting and trying everything I could think of once I realized that doctors are completely useless for anything but acute medical issues. Let me give you a short history of my health history so you can understand how I arrived at the solution. At 6 months old, I had severe hay-fever. This continued until I figured out the root cause. At 10 years old I developed psoriasis, first around my anus, then my elbows, knees, later on my ankles (anywhere where there was rubbing, or if I leaned on my elbows, or kneeled on my knees). It would form hard white scabby formations that itched like crazy and would bleed. Later in my 20's, I had patches under my hair, under my toenails (the doctor's thought it was a fungal infection), and on my tongue. Around 30, I started to develop severe constipation. Had internal intestinal bleeding, and the constipation got so bad I started having panic attacks. My body was in a constant state of heightened adrenaline and I had adrenal fatigue. I was constantly tired, needing constant naps, but I couldn't sleep more than a couple hours, so at night I had insomnia. I had a constant headache, and brain fog. Sometimes I couldn't even remember by friends names. Throughout my doctor visits, I was prescribed allergy meds. Cortisol for the psoriasis (which I'm allergic to). Coal tar cream did help for the psoriasis, but it just got rid of the itchy scaliness and then it didn't bleed. Later when I had panic attacks, I was put on paxil and ativan. But I couldn't function, I couldn't do my job (software engineering/management). With the severe constipation, not going for 7 days or more. I was told to take laxatives, Metamucil, eat more fiber (even though I had upped it and it seemed to make my problems worse). The last gastroenterologist after doing, upper GI, sonograms, blood tests, etc told me I needed to see a psychologist. Even though I knew my problem was my body was causing stress, not that stress was causing my body issues. Sometimes it would get better for a while, then it would flare up all over again. My life, my entire life had been miserable. I never smiled, I was angry all the time. But it was my normal, and I never knew that most people didn't feel this way. I quit my last salaried job in 2011. And it was then, that I finally figured it out. I quit to work on an iphone game. And now, without all the structured living (going to a job M-F, living a set schedule, wake up at a certain time, eat at certain times, go to bed at certain times) I began to experiment. I slept when I was tired and could, I worked when I was alert. But I also began to cook a lot. I started making all sorts of breads, muffins, cookies, experimenting to make the perfect pizza crusts. And that's when I noticed that if I ate a lot of wheat products my symptoms would flare up. Sometimes to the point that I would just lay in bed for a week, getting up to eat and use the bathroom, but in constant pain. And to top this off, around 10 I had some rye bread it made me so sick. In my 20's, I had to stop drinking beer, because it made me so sick. Even made my forever stuffed up nose worse and causes a sinus headache. A headache which was the source of the brain fog, which I would realize later. It was around this time I kept seeing the gluten free diet craze. Which I paid no attention to, because my symptoms were the exact opposite. Celiacs have constant diarrhea, I had constant constipation. But at this point, I was desperate, doctor's were utterly useless. And I decided, what would it hurt to try to go on a gluten free diet? So I went on a strict diet of meat, lots of fat and vegetables, I also eliminated all dairy. No packaged processed foods, gluten is hidden everywhere. After about 6 weeks, I felt amazing to the point of euphoria. My digestion starting working again. And oddly my psoriasis started to clear up, I had not expected that at all. After 6 months all of the psoriasis was gone, completely gone. This worked for a year or two, but I din't feel as good as I did sometimes. And I noticed all grains had a similar but weaker effect on my constipation. So I eliminated all grains, and my allergies vanished. Over the years if I eat a small bag of frito's my allergies will come back within 24 hours, but after 3-4 weeks they will disappear again. And I can go out and enjoy the smell of freshly cut grass, flowers. Ragweed can be in hyper pollinating mode and I might have to blow my nose a couple times instead of my eyes turning red and burning and having a constant stream of snot running out of my nose. But my hip hurt, my knees, elbows, and fingers ached from arthritis. And having seen the miraculous effect that food had on my other conditions I searched for a solution. I began to notice that if I had a big plate of potatoes, paprika chicken, hot peppers it seemed to flare up. So I eliminated all nightshades. And after about a month my arthritis went away. I no longer was constantly popping my knuckles, and popping my vertebrae when I woke up in the morning. In fact I can no longer pop them, as they don't get stiff. I'm going to be 42 this year and I have never felt this good in my entire life. I sleep like a baby, my mental sharpness and ability to quickly and efficiently hold big problems in my head and come to solutions is beyond amazing. Since figuring out the gluten problem, I started my own company. I have a product under development, but I'm so swamped with consulting work that I have not had much time to work on it. I work 100% from home. I am filled with profound joy and happiness. I no longer feel anger, stress. I have no problem striking up conversations with strangers. I'm a completely different person. Throughout the years since figuring out my problem, I have accidently eaten gluten, grains, nightshades, dairy. And the sypmtoms will come rushing back. But if I avoid the foods (poison), after 2-3 weeks I'm good again. I no longer eat out, I no longer even eat what other people have made special for me, as that is a source of accidental exposure. I make all my food 100% from base ingredients. Unprocessed meat, fresh vegetables, fresh fruits. Lots of Extra Virgin olive oil and animal fats. In fact about 65% of my daily calories are from fat. About 10% of carbs from fruits and vegetables, no processed sugar. I was never fat, but after eating like this I lost so much weight 155-> 131. That I upped my food intake, as I was too skinny. I have to work hard and sometimes force myself to eat an extra meal to maintain the 140 that eventually got back up to. I sit at a desk all day, don't exercise but have 6 pack abs. Every time my ribs start showing too much I have to eat an extra meal for a couple days. So I also discovered why most people are fat. I have since run across a famous quote, which would have meant nothing to me before, but is a fact of life for me now. Hippocrates — 'Let food be thy medicine and medicine be thy food.' If you want advice on how to try this experiment on yourself, send me an email (cmerinsky at gmail.com). After all, what do you have to lose?
• nandanmv 10y ago
  I was also diagnosed with Psoriasis around five years back. I went through the same cycle of meeting various doctors and therapists (Alternative medicine). The symptoms would go away while taking medicines but would come back once I stopped. So I made a decision that I will do whatever it takes to keep me generally healthy. I eat what my body loves to eat. I experimented with various diets but finally settled on this philosophy that worked for me. If you listen closely, the body tells us what it likes to have at any moment. Then I took to exercise and running. I run a marathon or at-least a half-marathon every year. I know that this disease may never be healed but 'am happy to keep it under control. I take it in a positive manner that this disease keeps me on my toes to exercise and eat right. Thanks and good luck!
• lobster_johnson 10y ago
  The good news is that while psoriasis currently has no known cure and is a life-long disease, the available treatments are generally quite effective. As with anything, the success of your treatment depends a lot on your doctor. The best way for a psoriasis patient to get treatment is to find a good dermatologist. Don't settle for a doctor until you've found one that seems super qualified. Even then, make sure you ask lots of questions and explore every avenue; doctors just aren't very good at giving you the full picture. For example, it took years before I knew about nail pitting, psoriatic arthritis, etc.; I had to do my own research, since the doctors didn't inform me. Doctors will also often prescribe crappy meds that frustrate the patient, like greasy ointments and foam (the "new" Enstilar spray foam is awful), or creams for the scalp (which is nonsense, use a liquid solution or a spray!). A disease this complex really should come with a manual. As I keep telling people, the most important part of psoriasis is getting it under control. It's not a life-threatening disease, it's just an icky one that impacts your sense of normalcy and well-being. (Although psoriatic arthritis multiplies everything.) Figuring out how to get it under control — to basically become asymptomatic — is almost the entire battle. It's a disease that for the most part can be kept in check. Since psoriasis is triggered by stress more than anything, staying asymptomatic is a positive feedback loop. Getting psoriasis under control involves (1) doing an initial intensive treatment to get inflammation down, (2) trying out different regimes, (3) sticking to a fixed routine (topicals, etc.), (3) adjusting until you get last two right. Sticking to a routine also means not skipping topicals when you don't feel like doing it. You'll be rewarded with nice, smooth skin. For most people, #1 means using a potent corticosteroid. Immune-suppressants (including biologics, which target the immune system responses that trigger psoriasis) are a last-resort kind of deal for people with large amounts of affected skin, since they come with potentially major side effects. There's no avoiding steroids, but there are a few things that also help: * Calcipotriene (a synthetic vitamin D3 derivative). Not very potent, but safe. It takes weeks to show any improvement, but it works with long-term, daily use. * Coal tar works great for a lot of people. Shampoo is particularly great for scalp psoriasis. Comes in both weaker OTC ointments and shampoos (e.g. Neutrogena T/Gel or Pinetarsol), and also a prescription-strength formula that you can rub into the scalp and wear for a week (under a shower cap), and which can clear up the psoriasis completely for months. * Topical immune-suppressants such as tacrilimus (Protopic) are great for tricky areas like skin folds. Less side effects than steroids. * UV phototherapy. While a lot of people respond positively, and it's very cheap, it is of limited usefulness, as you quickly reach your maximum dosage, and the effects don't necessarily last that long. By the way, psoriasis is very often misdiagnosed. To other reading this, if you think you might have psoriasis, get a biopsy to make sure. Doctors are pretty terrible at diagnosing it correctly. Lots of people walk around thinking they have psoriasis when they actually have seborrheic dermatitis, or vice versa. Lastly, there's a good community on Reddit for this: https://www.reddit.com/r/psoriasis https://www.reddit.com/r/psoriasis. Good luck!
• go_prodev 10y ago
  A couple of years ago I was researching emerging Rosacea treatments and if I recall correctly, Potassium Dobesilate was found to clear up psoriasis plaques very effectively. I'm at work so can't verify that, but might be an interesting read for you. Never give up hope, there's a lot of work being done in this area.
• Mtinie 10y ago
  Have you tried a low-carb diet before, out of curiousity? I ask because what you described as symptoms mirror many of mine (but mine were not nearly as severe). I found that prior to modifying my diet I'd have "random" flare-ups that I could not attribute to anything environmental -- or so I thought. I started a ketosis diet for weight-related reasons, but quickly found out that the skin issues I'd been experiencing abruptly ceased. My hypothesis is that I have a specific sensitivity to a modern wheat strain. I'm not sure which one it is yet, but that's going to be my goal over the next year. My experience is my own, so I don't want to give hope if my situation is different, but the diet change is doable for a short period of time to test a hypothesis. Shoot me a note if you want to discuss further. My contact info is in my profile.
• et1337 10y ago
  My father went through the same exact experience with psoriatic arthritis. Between dieting and medication he's been able to handle it, but it's always there. He can't really grip tightly with his hands anymore. It sucks, but I hope it helps to know there are people out there successfully dealing with the same struggle.
• agumonkey 10y ago
  No cure now. We can push for closer, more detailed, more personal medicine, more open and largescale too. That's the only option for people outside of the already known solutions.
• magic_beans 10y ago
  What do you eat? You should try a restrictive Autoimmune diet.
• maxlamb 10y ago
  That's interesting, in my mid 20's the area above my ears also became itchy and flaky, inflamed, just like you describe, and it lasted for years. My hair started thinning out in that area as well, and I was generally not feeling well. In my early 30's I started noticing correlation between eating wheat products, especially anything with white flour, and the symptoms flaring out/getting worse in the next few days. I started removing all foods with gluten from diet (which I found pretty easy actually, basically no more bread and stick to rice, sweet potatoes, beans and fruits for starch) and the symptoms disappeared almost entirely over a few weeks. I started supplementing with daily vitamin D and started to feel even better. I would experiment with removing gluten from your diet and vitamin D supplementation to see if the symptoms improve over a 2-3 week time frame, if you haven't tried already.