/r/Psoriasis

Photograph via snooOG

A help forum about all matters relating to psoriasis. Whether it's relating anecdotes for support, giving advice, or looking for help, all posts welcome. Important: This sub does not offer professional medical advice; always see a doctor.

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Please visit the wiki for help and our FAQ.

Disclaimer

This subreddit (including this wiki) is not medical advice. Always consult a doctor. Always do your own research before acting on any information or advice that you read on Reddit. The authors and moderators take no responsibility for any decisions or actions you make based on the contents of this subreddit. The authors and moderators make no representations or warranties with respect to the quality, accuracy, or completeness of the contents of this subreddit and specifically disclaim any implied warranties of merchantability or fitness for a particular purpose. The advice and strategies contained herein may not be suitable for your situation. You should consult with a medical professional where appropriate. Neither the authors nor the moderators shall be liable for any damages, including but not limited to special, incidental, consequential, or other damages.

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Be nice, stay on topic, and do not post spam or links to dubious miracle treatments. Please read all the rules before participating.

/r/Psoriasis

55,050 Subscribers

8

My best practices after 30 years of Psoriasis

Lifelong psoriasis "sufferer" (though I dislike that term) right here. A few years ago, I never would have considered sharing this on a public forum, but I’ve come to realize that many people don’t understand how impactful psoriasis can be, especially at certain stages of life or in certain professions. Old enough to not give quite as many F**ks. Young enough for it to still matter, as it relates to my ability for function in my profession at the highest ability I am capable of.

I’m posting this with my company handle on purpose—let people know. If you’re in sales, like me, you use your hands all day to display, explain, and sell. In the past, I have resorted to wearing gloves and pretending I was in the middle of a mechanical task when a customer arrives. My psoriasis is most prevalent on the joints of my hands. I’m going to share some treatments that have worked for me.

NOTE ON INSURANCE: Yes, the following prices are WITH stellar insurance. These drugs are new, and still inside the 10 year R&D recoup and profit window before generics are allowed. R&D cost money. In a decade we will all have generics of these. Resist getting frustrated and abandoning what helps you. Advocate for yourself. No one else will. Get a good Doctor who will write you "pre-authorization" letters to drive the cost down or free coupons offered by the respective Pharma companies, don't wait for the pre-authorization request. Demand it of your Doctor when prescribing. If they will not accommodate you, ask them why? Get a real response and not a walking away comment. Calm, logical assertiveness is a tool. Use it. Make them aware the failure to grant you a few moments of extra administrative time is not serving you as a patient. As such, you are both willing to seek health care elsewhere and share with the public review platforms your experience with this health care provider. Be polite, demand empathy, did I say be polite...this pail carries a lot of water. Use it with a firm hand. Do not threaten your Doctor. Your request is not B.S. You are seeking health care for a condition that impacts multiple valances of your life. Social, economic, inter-personal and emotional. If that is not justification for granting a 2 minute "pre-authorization" form. You have a subpar health care provider. Declaring this to the public via review platforms is not a act of malice, it is how the market works. Doctors are service providers just like a roofer or a plumber is. They are not immune to factual and justified criticism on review platforms. Be professional, and honest if you do review them. The truth speaks for itself in this instance. It is just the truth. If you present this as it is, with tact and firm stance. It is a inarguable position.

ZORYVE: Works well and fast, reducing symptoms by 85%+ on my knees, elbows, and a few spots on my lower limbs. My hands and lower limbs regions (small patches by ankles) have been the most resistant to treatment. I speculate this may relate to joint size and vascular inputs/outputs at the place in my anatomy, but that’s pure speculation. No side effects. However, it's quite expensive—over $1,000 per tube per month. Most importantly it has a different mechanism of action. Which is huge, you want to hit the plaques with different pathways to actions. We are all genetic snowflakes, each one of us vastly different. One of these will likely work better or differently than it did for me. Have all the tools available in your tool box. Little to no rebound effect, if anything it seems to work ultra long term after treatment.

VTAMA: This has a different mechanism and works equally well, but it’s even more expensive at $1,800 per month. I found it works slower, and does not feature the remission retention that Zoryve does. As a alternating combo it works all the better. I recommend doing a split body trail. Write down L side of body and R. Document when and where for the first week. You will have a clear picture by weeks end what is working better and in which combo. Use both sparingly. Less is more.

Taclonex: I call this my “social event ripcord.” Taclonex clears affected areas in two days, but symptoms return about 20% worse. It produces “onion skin” and is only a short-term solution for social situations, especially for my hands. 20 years ago this was the only prescription that worked. I had to use it only when I NEEDED it. We live in a much better time now. Be grateful. It will feel like you found a miracle ointment. It is not. It is a faustian bargain. Psoriasis free for X number of days. The longer you use it, the worst it will return. Seizing new territory for the bargain. This is an emergency use product. By way of example. I used it for the days upto when I got married decades ago. Weeks later, my Psoriasis was easily 25% larger, and "angrier". No biological free lunch is at play here.

ENDOCA BRAND NAME CBD CREAM: Do not waste time and money on any other brand. I have already done it for you. 10K(?) and years later of trying different brands of CBD creams. ENDOCA is the only one that works. I do not fully know why. It is likely the quality and concentration of CBD Cannabinoids. The CBD industry is full of snake oil salesman, and opaque ingredient labels. I found ENDOCA strictly by trial and error. It was clear that CBD cream worked (not oil), the cheap ones work marginally. 5-10% improvements. The more money I spent, the more CBD content I got. The better the results. ENDOCA has flaws. It does not absorb well, or fast. I will stain clothing. It will get on anything you touch. If you live with Psoriasis you already know this. Buy dark tops, and expect them to get ruined over time. This is just part of the deal. I tried occlusion patches for both absorption maximization and reduction of stains bleeding through fabric. They are on our joints, they move too much. If you have a financial burden, the only solution is heavy gauge plastic baggie, cut open to form a cuff. Wrapped around the impacted joint, covered and held in place with coaches tape. This works but is very uncomfortable, and you sound like a walking potato chip bag. But it is what it is. Closing note on ENDOCA, Zero, 0, Ziltz rebound effect. If you stop using it. The gains in spot reduction will stay around for a long time, if not forever. Or until a new full scale flare up.

Scalp Psoriasis: When life becomes stressful, or if I’m having cocktails around the holidays, psoriasis flares on my scalp. This buildup can give the impression of hair thinning, as it blocks the hair shafts from growing and getting proper exposure to air/sunshine/ and breaking the hydrophobic bonds of your hairs natural oils AKA Build up of stuff that makes it worse for both hair growth and psoriasis management. Here’s my solution, it has NEVER failed to work. I am lucky to be closing in on 50 with a full, thick head of hair. Aside from the psorasis part. I find doing this aids my hair growth in general, 3 months after I buzz my head the plaques are gone and unaffected areas of my head are nearly twice as robust as they were before. I think it may be a good idea for anyone, let alone Psoriasis suffers:

  1. I buzz my head with a #2 clip, creating a clean slate.

  2. Apply prescription Ketoconazole(inexpensive) about 40 minutes before showering, letting it sit.

  3. The next day, use a 5% Coal Tar shampoo with the same 40-minute “steeping” method.

  4. Day three, use a Salicylic Acid shampoo (T/Sal by Neutrogena) the same way.

Repeating this rotation for one week. It clears the scalp until the next stress or holiday season.

Systemic Care: The following carries that same unfair realities of life. If you have a hot-tub and a Blue Cube at home. It is a force multiplier for aiding this condition. I find the turbulence of the jets really gets the ingredients of the brew mixing around constantly and consistently for the whole time in the tub. Then the ability to jump right into a circling ice bath has the same impact. Both releasing a cascade of anti-inflammatory cytokines. The combo is powerful, has no side effects. If anything, it just makes you feel better flat out. Again, I recognize not everyone has access to these therapies. Do what you can, with what you got.

If you experience general inflammation and have access, try a hot tub with the following: 2 lbs of Eucalyptus Epsom Salts, essential oils (spearmint, tea tree, eucalyptus), a hard hand scrub sponge, and Dr. Bronner’s liquid castile soap. Put it all in the jacuzzi before you get in and let them swirl around.

Sidenote: Good, but perhaps gross side note: If you do have the luxury of a Jacuzzi, all of the exfoliated skin will NOT sink to the bottom. It will cleanly and easily collect at the jet inlet cover. Mine happens to be at chest level and is as large as a frisbee. Allowing me to remove the unsightly aftermath with ease. If not, be mindful of the next person to use your tub. Put a strainer in the drain and clean the tub out. Yes, it is gross. Certainly to those not impacted by Psoriasis. Simply stated, this is your problem, so just clean up accordingly. Soak for an hour, lightly scrubbing, then immediately take an ice bath (Blue Cube or a refill with cold water and ice if you don’t have access). This combination creates a fresh base to apply Zoryve first, followed by ENDOCA CBD cream. This gives me a week of remission, except for my hands.

Tanning: Tanning helps, while burning makes it worse. Tan often but only for half the recommended time.

My social recommendation, as a person who has to speak/sell to dozens of people per day as well as present at corporate events. If someone looks at your hand/face (wherever you are effected) I instantly address it with a line. I will crack a joke like, "I'm trying to turn into a Teenage Mutant Ninja Turtle", and then instantly and casually say. "It's just psoriasis, don't worry you can't catch it...or can you?" and then I make a mock Zombie lunge.

This is obviously situational, and deployed when I know I will be with this business associate for a long period of time, or the person is hyper fixated on my hands. Just get in front of it, own it and make light of it. Don't get defensive or shy.

It is NOT the average person's job to fully understand the nuances of YOUR skin disorder. It is your problem, and your problem to deal with. Socially, and medically. Put the party in front of you at ease. Crack a joke and move on.

This works 99% of the time, and often will result in a later conversation...that they initiatie about what exactly is this condition. Allowing me to advocate for those impacted, and not making someone feel stupid or ill at ease.

Thank you to the forum for existing. To the fella in the photo. Please give my protocols a shot. I bet one of those 5+ options will reduce or eliminate it. If they don't, remember there are people who have had their eyeballs shot off in combat, or car accidents. Life goes on, and most people don't really care.

If you are in the dating pool (which I was, with this condition in my 20's) face it head on. If someone is turned off by this condition, and you are otherwise a good human, and a person of merit. They can find someone else. You dodged a proverbial bullet by getting to see the real them right away. Think gift...not curse.

Head high my friend. You got this.

4 Comments
2024/11/09
18:27 UTC

1

Scalp redness

Anyone managed to remove redness on scalp?

1 Comment
2024/11/09
15:34 UTC

1

Lotion that works

I've been dealing with a massive flare up for a few months now, probably 25% of my skin. I've taken several courses of methylprednosolone, clobetasol shampoo and ointment, a few other prescription topicals, and multiple lotions. This one finally worked to tame it, it's not cured but almost tolerable and I've even been able to sleep well without waking up to an itch fest. This has been a life saver and I'm buying more. Finally have derm appt next Thursday, hopefully this lotion keeps me from needing an immunity suppressing shot.

1 Comment
2024/11/09
15:13 UTC

1

If you’ve made lifestyle changes to manage your autoimmune condition, which one has had the most drastic impact on your symptoms?

Psoriasis Warriors, Help me.

View Poll

8 Comments
2024/11/09
12:08 UTC

1

30+ years of treatments.. now what? Planning..

Anyone here stabilized with Biologics and able to manage at age 55 and beyond? I'm feeling the drag and looking for suggestions on how anyone can manage the cost. Do I just expect to start going back to where I started and call it a good run..?

12 Comments
2024/11/09
09:10 UTC

2

Guttate psoriasis

I’ve been struggling with guttate psoriasis for the past four months. It all started after I had strep throat back-to-back this summer, and it’s been a constant challenge ever since. Living with this condition has taken a serious toll on my mental health, making me feel frustrated and defeated as I try to cope with the daily discomfort and visible impact on my skin. I’ve tried countless steroid creams and explored natural remedies, but nothing seems to provide real relief or lasting results.

This experience has changed me in ways I didn’t expect. It’s made me more aware of my own resilience but has also exposed just how vulnerable I feel at times. If anyone has tips or any advice on managing guttate psoriasis, please share. I’d love to hear what has worked for others or any recommendations for relief.

4 Comments
2024/11/09
07:48 UTC

2

Medications mandatory??

Ive had very minor psoriasis and psoriatic arthritis for the last 10 years... I was diagnosed 10 years back itself but it was nothing that troubled me .. both the psoriasis and arthritis itself apart from minor aches in the fingers of both hands.. nothing else.. infact they are so mild that I even forget it at times... No medicines apart from when I treated my initial flare...

Fast-forward 10 years and going thru this subreddit yesterdat reading that medicine is mandatory all thru life and having to take such strong immunosuppressive medications for life is freaking me out... Can I know if this is really mandatory coz im in no trouble as of now... It just hasn't made any impact in my QOL at all...

10 Comments
2024/11/09
05:27 UTC

1

Borics Tea tree Shampoo

This has been plaguing me, Borics has a tea tree shampoo that used to make my scalp tingle. As a scalp psoriasis sufferer this was such a great feeling. I have been trying to find anything like it. This is niche but wanted to know if anyone remembers this shampoo. I can’t find pictures of it online.

3 Comments
2024/11/09
04:09 UTC

1

What is it

1 Comment
2024/11/09
04:03 UTC

2

Thigh chaffing

Hey everyone! I'm currently having a bit of an issue and wondering if anyone had some suggestions. I've struggled with psoriasis for over a decade now and in recent years I've gained a lot of weight. I've always had jobs where I'm on my feet and I'm becoming more and more active to lose weight however my thighs chafe really bad and now it's gotten to the point where I have psoriasis on my inner thighs high up close to my goods 😂😭. I've tried keeping them moisturized and have been wearing loose breathable cargo pants but at the end of every day they're really irritated and itchy and I can't seem to get them to calm down. I work pretty much every day on my feet so letting them rest is not really an option. I've tried wearing biking shorts underneath my pants to stop them from rubbing together and making my psoriasis worse but it doesn't seem to be working. Any advice is welcome, I just want to stop being in pain.

2 Comments
2024/11/09
03:28 UTC

1

psoriaris

I have dry cracked peeling glans no symptoms i have been noticing that there is lot of people say its geital psoriasis now my queqtion is it vaseline healthy for the glans?

1 Comment
2024/11/09
03:20 UTC

0

Vestibular migraines anyone?

Started having VM symptoms and received official diagnosis 4 months after being diagnosed with PsA/spondyloarthritis, psoriasis and rosacea. The neurontologist prescribed me Migraine Care for 3 months. It's a combo of Vitamin B2, B6 and CoQ10.

1 Comment
2024/11/09
02:40 UTC

1

Starting Oral Acitretin (Soriatane) 25MG tomorrow. What should I expect and what should I look out for?

While I don’t have Psoriasis I do have a similar condition i was diagnosed with known as Frontal Fibrosing Alopecia and Lichen Planopilaris. These two scarring alopecias cause inflammation to my scalp and destroys my hair and because of this my dermatologist prescribed me oral Acitretin at 25mg once a day, he said that he saw no history of liver problems but told me get blood tests every month for 3 months and then see him in person again after the first 4 months to see if it’s stopping my inflammation. While I was told severe side effects are low and I’m a safe candidate for the medication I’m still concerned for the common ones and wanted to know if I can do anything to prevent or treat them. I also wanted to know what else I should expect while taking this medication, could anyone help me out?

6 Comments
2024/11/09
01:57 UTC

1

Scalp question

Hi all! I have psoriasis on my scalp. I currently use betaderm lotion on my scalp but I find it just gets absorbed by my hair. I end up using a lot of lotion and running out before I can refill and my doctor has told me that I should only be using a dime sized amount.

Is there anything better suited to those with long hair? I have tried diet changes, rosemary and CBD oil, weekly ocean dips, etc.

Sorry if I didn’t post right this is my first post here! Appreciate any and all suggestions and help :)

2 Comments
2024/11/08
21:18 UTC

1

Online diet resources?

Has anyone got any good resources for trying to heal psoriasis through diet, I’ve tried every topical treatment possible and my psoriasis isn’t bad enough to get on medication so I’m open to trying something new through diet if anyone’s got any tips or resources I’d really appreciate it💖

3 Comments
2024/11/08
20:47 UTC

2

Recommendations please.

Best body wash and body moisturizer for someone who has a light form of psoriasis? I’m new to this group and looking for recommendations. Also, with the winter months approaching hoping to find some relief. Thanks.

6 Comments
2024/11/08
20:21 UTC

1

Recommendation for UVB Light Therapy Product: Guttate and Scalp Psoriasis

My insurance has approved me for an at home light therapy product— either the Daavlin 7 Series or the Daavlin DermaPal handheld device. I am really torn about what product to choose, primarily because I live in a smallish home.

I currently have:
- Scalp Psoriasis (Which the DermaPal would treat better)
- Face Psoriasis: Eyebrows, one patch on my cheek, and ears (Dermapal would treat better)
- Guttate Psoriasis on my stomach, back, and arms. It is usually only a few spots, but currently my stomach and back are probably 50% covered with spots. (which the Daavlin 7 series would probably treat better).

Any recommendations of what I should move forward with? Has anyone had luck with the Daavlin 7 series and scalp / ear psoriasis? Or, used a wand UVB to cover larger areas like the stomach?

Thanks for your help.

2 Comments
2024/11/08
17:44 UTC

2

How to use nizoral properly to descale?

I have some thick plaque on my scalp, and it still feels thick, not as thick as before but still thick. I’m using the 3% sal acid nizoral psoriasis shampoo and conditioner and I read in the wiki that in order to descale I have to let it sit for hours in a shower cap then wash it out, but it necessarily doesn’t say that for nizoral.

Any ideas to help me? It’s labeled to only 2x a week and I’m alternating with coal tar shampoo to help

Edit: I rubbed the shampoo into my scalp and let it sit for 8-10 minutes

8 Comments
2024/11/08
16:32 UTC

3

Does this sound like a possible presentation of psoriasis in ear canals?

Not asking for diagnosis! I have several doctors appointments lined up over the next few weeks as I actually have a complex health situation going on!

So psoriasis isn’t really something I had been considering.. but it popped into my head recently. I’ve been dealing with complex health symptoms for about 2 years now but one thing that has always been a mystery has been my ears. Before the other more serious symptoms started, I had on and off itching in my ears. I went to the doctor several times, they looked and no sign of infection; but they kept prescribing different antibiotic drops… nothing really helped, but the itching just sort of went away for a bit and would keep coming and going. It’s always been manageable just a bit annoying.

Eventually, it changed to a feeling of impacted ear wax or something.. just a clogged feeling. I saw an ENT. He cleared out my ears (although nothing was really in there, did a hearing test, even an mri (because I have ongoing dizziness related to other health problems) but he saw nothing wrong.)

Well now, I have been super clogged, have horrible itching, wetness collecting in one ear, forming a crust along my outer ear canal, it’s flaky and yellowish/white, it bleeds and is even painful.

I’ve also had flaking on my scalp for several months that I haven’t had before.

The reason that I sort of had a lightbulb moment about it possibly being psoriasis is because in my other health problems, I’ve been being worked up/treated for probably ankylosing spondylitis for almost a year now. It’s highly tied to psoriatic arthritis. My case isn’t totally black and white, and my rheumatologist and I are still trying to figure out exactly what’s going on with my body, so not this feels like a new “clue.”

I’m seeing a new ENT at a university hospital in two weeks as well, but thinking I should seek out a dermatologist now too. I also see my rheum. again next week so will bring this up with her.

So just wondering is psoriasis has ever presented this way for anyone else? Just a long, almost 2 year process of itching ears,, not really “showing” itself externally for quite some time and presenting mostly in the ears, possible scalp???

12 Comments
2024/11/08
15:50 UTC

0

Inverse psoriasis question

So I mostly deal with eczema my whole life. I know when a flareup is coming. But recently theres this flareup thats not my usual flareup, its in my inner elbow. At first its just looks like eczema but it doesnt itch, so I treated it with steroids. But then it doesnt go away.

The progression is like this (Note I am using steroid on this as per my derms advise)

  1. Slighty red and irrated skin.
  2. Redness gets bigger.
  3. Skin thickens and tigthens
  4. Small open wounds started forming ( I noticed because when ever i take a shower, it stings)
  5. The thicken skin starts to shed.
  6. A new skin formed.

This has thrown me out of the loop because this never happened to me before. So just wanna asked if someone experienced this before. Per my research, mine looks like inverse psoriasis.

42 Comments
2024/11/08
12:42 UTC

16

Psoriasis & Alcohol

I've regularly drank alcohol for quite a while now, and I've recently been made aware that alcohol is related to psoriasis flare ups

My psoriasis has always been very randomly aggressive ever since I was like 4 years old, so it's kind of hard to track any causes. And recently I've been noticing a lot more psoriasis than usual after being decently clean of psoriasis for a couple years.

If I quit alcohol right now, would it take to notice any change in the psoriasis? Months? Years?

On a side note, does coffee also make psoriasis flare up?

Thanks for the help!

40 Comments
2024/11/08
05:30 UTC

57

This is the Holy Grail for me. I posted once before and got shamed because it was so inexpensive and not the best product maybe but I’ve been using it on my psoriasis spots on my lower back upper back and legs, and those are completely healed.

40 Comments
2024/11/08
03:54 UTC

1

Dupixent and Skin Peeling?

I’ve always had eczema, but after starting Dupixent, I’ve noticed a strange peeling pattern on my skin that I haven’t seen before. It almost looks like how psoriasis is described, even though I’ve never been diagnosed with it. Has anyone else on Dupixent experienced this kind of skin reaction?

2 Comments
2024/11/08
03:52 UTC

3

Skyrizi Experiences/Stories

I am fixing to start Skyrizi injections. I want to hear your stories and your experiences with this injection, side effects, symptoms, any insurance issues later on, anything i need to take into consideration. Literally anything even answering questions like can I get off of it later on? Or will this affect fertility? What do I do if I get sick instead of taking antibiotics and holding a dose??? Help!!

11 Comments
2024/11/07
22:45 UTC

3

Coverage Change

I just received a letter from my Specialty Pharmacy stating that Humira will not be covered as of January 1, 2025. Instead, they list 2 options that are covered, “Preferred - Amjevita, Non-preferred - Adalimumab-adbm, Hadlima, Simlandi.

How should I approach this? What do I need to be aware of?

2 Comments
2024/11/07
21:09 UTC

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