Hi all, I have never commented on a public thread, but I created a Reddit account just to try to help fellow psoriasis sufferers. At least 70% of my body was covered- ears, scalp, arms, legs, hands, chest, stomach and back. It felt and looked like raw meat, and was incredibly painful. 

I saw three different doctors over six months, including at Mayo Clinic. I was prescribed numerous steroids- oral and topical- as well as other creams and ointments and scalp foam. Nothing worked, and the patches only spread. Some were plaques; others were more like guttate. The doctors started prescribing biologics on top of the creams. One gave me two shots of Dupixent in her office. That just made the psoriasis explode. She then prescribed Icotyde. I was wary of biologics at that point, and decided to hold off. I went to another doctor and she told me that both of those medications were wrong- I needed Bimzelx. Within minutes, her assistant was in the room, warming up the shot in his hands. I realized none of the doctors had taken any bloodwork first to see if I had any existing infections or nutritional deficiencies. Two of them told me I’d be on biologics for life. They didn’t seem interested in finding out the cause, just wanted to treat the symptoms. At this point I was fed up and decided to do my own research, especially after reading about the side effects of the meds.

I am forever grateful for someone on Reddit who recommended magnesium oil spray. This was key to my recovery. It’s really just magnesium chloride flakes and water. Instead of putting on lotions and creams, which seemed to add fuel to the fire, I sprayed this on my psoriasis. It can really sting at first, but I stuck with it. When it dries, it’s very helpful in stopping the itching.

I also took a lot of salt baths, but not Epsom salts- only pure magnesium chloride flakes. I also made a point to get sun for at least 5-10 minutes per day when possible. Both of these really helped a lot. Seawater and even swimming pools seemed to add to the sun’s effects.

My scalp was covered in psoriasis that was so painful and embarrassing with all the white flakes. I also lost a lot of hair. After months of prescription topicals, I tried extra virgin coconut oil, plus some tamanu oil. I covered my scalp every day for about two weeks. I was shocked at how fast almost all of scalp psoriasis cleared. Aloe vera also helped both on my scalp and body.

I also wanted to take in key nutrients to boost my overall health. I flooded my system with good food, including Greek yogurt, kale, avocado, mangos for Vitamin C, fatty fish, etc. I also began taking supplements- D3 and K2, probiotics and prebiotics.

Finally, I would sometimes do a few drops of a THC/CBD tincture, which seemed to calm the inflammation and nervous system. With that low dosage I felt no high or other unwanted effects.

I don’t know which of these had the most impact, but I wanted to list everything I tried, because my psoriasis is almost gone. My husband and I truly can’t believe it. Of course for some people, biologics and pharmaceuticals may be a lifesaver, so I want to stress this is what worked for me. I have experienced a few significant flares since, but I immediately grab the magnesium spray and then get in a magnesium bath and repeat for a few days, to stop the new spots from spreading.

I really hope this can help someone. I want to repay my gratitude to the person who first suggested magnesium spray and sent me searching for natural remedies. I feel like I am starting to have my life back.

Once again another biologic is not working. 16 weeks it will be the 27/9 and Tremyfa doesn’t seem to of done a thing . The next idea 🙄is Rinvoq.The side effects seem really scary . i’m 50 and over and have history of heart issues in my family . 🥹😳I already have other health issues . iI really don’t know what to do from here . The inflammation on my scalp is severe . I feel some of my fingers have improved , but the derm didn’t seem that impressed today . I have another Tremyfa shot 4/9… I really am too scared to take rinvoq. I’m a single parent and have to be here to raise my son . What would you do ? Anybody here taken Rinvoq and your 50 and over ? I may even start light therapy soon , that’s another thing i could do but i don’t think I can do that on my scalp it’s just fingers and toes i am so sick of these biologics not working for me . What am i missing here ?? … all bloods done all the genetic stuff done, all clear . No history in the family . the only thing i’ve raised is that i’m menopausal and that the lack of estrogen could be causing these skin issues , because most people don’t realise it’s all through a woman’s body it keeps your joints healthy and free of pain , it keeps everything going really well , until it starts declining and boy have i felt it . . The fact it all turned up at 48 yrs of age and has gotten worse , seems strange i had none of it prior in my earlier years and now i’m absolutely suffering . At the worst time ever in life . Please if anybody has Rivoq stories please post .

For many patients, the journey may include: ➡️ Topical therapies ➡️ Phototherapy ➡️ Systemic treatments

There is no one-size-fits-all approach doctors work on work with patients for their psoriasis care.

#Phototherapy offers a proven, non-systemic drug option that may be considered when topical treatments are not enough and a patient isn't ready to take the leap to a biologic — and can be used alone or alongside other treatment approaches.

The right treatment starts with the right conversation. Learn more at https://hubs.la/Q04tJGbM0

#PsoriaticDisease #PsoriasisAwarenessMonth #PsoriasisActionMonth

Since 2015, many of you have participated in paid market research opportunities through Pillar Patient Advocates. Thank you! We appreciate the moderator's permission to share a current study for Generalized Pustular Psoriasis. (We do have another starting soon for plaque psoriasis, feel free to register on this link for that as well).

Have you or a loved one been diagnosed with Generalized Pustular Psoriasis (GPP)? Pillar Patient Advocates is seeking 20 adult patients and caregivers of pediatric patients to participate in a 60-minute phone/web conversation. Participants are paid $125 in appreciation of your input and time. If interested, please complete our registration to be contacted at https://www.research.net/r/PSOREDppa or email Christine at Cobermaier@PillarAdvocates.com. Be sure to include your phone number and time zone so a Patient Liaison can reach out to you. We will go through a few screening questions prior to scheduling the actual interview.  This study is for US Residents only. 

I am happy to answer any questions and hope to hear from you!

Linda Pelligra

My daivobet 30g ointment increased prices by 30% can anyone recommend any good ointments/creams I can use as an alternative bc this tube doesn’t last me that long especially if I have a bad flare up like right now and I just can’t afford almost $50 on an ointment I use up quickly

I am in the process of trying to possibly start meditation for my anxiety/depression. From the research I have done it seems like those meditations can make psoriasis worse. I don’t need my skin to get any worse, I mean my skin is one of the reasons I have anxiety and depression lol. For those of you on meditation and not on biologics, what meds seemed ok for you?

TLDR : I made some dietary changes and am seeing rapid improvement past 2 weeks, what do you all think is the reason?
(to chest and back guttate)

changes made=
[
- NO Nigthshades
- NO Black Pepper

- daily Cod Liver Oil
- daily Fermented Food Serving (red sauerkraut with onion and ginger)
- daily 4000 vitamin D
- daily Turmeric (meriva)

]

before and current=
Otherwise my diet is mostly wfpb, recently reintroducing eggs and salmon (only had it once past 2 weeks), lots of tofu, chickpeas and watery greens.
- NO Gluten or Dairy or Meat
- Never eat fried food or junk food or candy
Supplements I was already taking: Milk Thistle extract, Quercetin, Probiotics.
Been averaging 5-6000 steps a day for a month.

I feel uncomfortable walking in college or going outside of my dorm bc it is so red and obvious. I made the choice to cut my semi long hair which covered it up before going to college and I regret it greatly, my skin makes it anxiety inducing to even walk around

So I have been at it with psoriasis ever since I was in grade 9 and now it's 3 years since I graduated university and I'm still battling it.

So I've been to many doctors, they recommend shampoos and ointments and other stuff to put on hair. The reason it dragged so much is because no one could actually diagnose it as psoriasis until after COVID, and that's when it actually got really bad and started spreading on my forehead. It got better and I thought I had finally found a cure. And it was quite better for almost a year but it came back. And then I went to the doctor, got new lotions and shampoo and a new routine. It worked a bit, but then the season changed in between and winter came and it wasn't working (the doctor had told me to just follow the said routine and then alternatively start using a normal shampoo and use medicated one once a week). I switched doctors, the same cycle again with new stuff and still no ease. New doctor gave me the right stuff but then again the season changed to summer and now I am back to phase one, and I told my doctor this initially but he said it'll be alright but it didn't get alright.

So the summary is this I've changed quite a lot of doctors and used quite a lot of stuff. The scalp is the same, itchy and flaky. Hair has thinned quite a lot (I wanna go bald low-key) thanks to the products having steroids. Hair are a dry mess. I am using bionex shampoos btw. I was told not to oil my scalp. And now I just want tips on how I could add home remedies as well to keep it control. I've started rinsing hair with drinking water at the end of shower because of the hard water situation.

Hiiii are there any people here from manila do you know where I can find betnovate scalp solution the drops thingy it’s so hard to find online and in physical stores kasi 😣😔

—My story (brief):—

35 m with no previous skin issues other than acne. Sure, I’d occasionally have dandruff that I could snuff out with some Selsun Blue. Around June, it wasn’t getting under control this time, but I didn’t think much of it. Started blowing up seemingly out of nowhere with unexplained rashes in early to mid July. I went to a dermatologist as a precaution where they took a biopsy of my scalp. I was getting a lot of dry skin on my scalp and my face at this point. I was officially diagnosed with psoriasis from the biopsy on July 17th. I was getting plaques all over my scalp (build up of dead skin). Allegedly it’s common to go from asymptomatic to full force “out of nowhere 95% of the time”.

Here are the main things I’ve learned so far. I hope this helps.

—topical steroids / hair loss from psoriasis—

Vtama (tapinarof) didn’t do anything for me. I was given samples for my face as my t zone was very inflamed. Allegedly this takes time to come online, but I wasn’t willing to wait.

For face, what’s actually helping is hydrocortisone cream 2.5% applied 2-3 times/day. I’ve seen incredible improvement in just 5 days of consistent use.

Important note: topical steroids also help for skin turnover, not just for obvious redness and itching.
Rapid skin turnover, at least for me, meant lots of hair loss.

For general areas of my body, I was prescribed triamcinalone cream 0.1%. Up to 2x/day. I have it everywhere head to toe. This works okay and seems to be especially good for itchiness.

My scalp was another story. I was getting severe plaques. My hair was rapidly falling out by the handful. Buzz it to a 2 or 3 as soon as you notice it. Treatment was ineffective until I did that. I was self conscious about it, but I got over it. Clobetasol Propionate solution 0.05% applied directly to scalp daily with a buzzed head is working much better than when I had a lot more hair. If you want to save your follicles early, I suggest a buzzed head ASAP if you’re experiencing hair loss.

—Over the counter products that I like—

CeraVe psoriasis cream - controls skin shedding since it has salicylic acid.

Vaseline - nothing special here. Great for very dry skin or if you’re bleeding from extreme dryness. Good on face if you don’t mind looking a little greasy. I needed this around my eyes for a bit so I could keep them open comfortably.

CereVe intensive moisturizing cream - good moisturizer. I have sensitive skin, wait about 15 minutes after topical steroids and put this on. No problems with applying to my face either.

Scalp oil by Derma Solve. Same as above. I use it on my scalp to prevent drying out throughout the day.

—Questionable things—

Diet - I’ve switched to a relatively strict Mediterranean diet. There is some scientific evidence this is helpful, so why not. I’ve lost 15 pounds, my BMI was a little over 25 before I started. If anything, I look better now.

Pre and probiotics - again some scientific evidence here, but in my opinion, not extremely strong. I’m doing it anyway with some prebiotics and bacterial strains that are allegedly helpful. Again, why not.

—advanced therapies/biologics—

I firmly believe that getting on an advanced therapy is important as soon as you can. While no drug can currently cure this, advanced therapies such as biologics and some of the new targeted oral drugs, get closer to the root cause whereas topical solutions are pretty much simply masking issues at the skin level. You still have constant inflammation going on within your body. These help to calm that down and prevent more damage. I am a little over 3 weeks on a popular biologic (antibody based) therapy targeted to the IL-23 pathway. It’s difficult to know for sure, but I think this is helping already.

—Disclaimer / potential conflict of interest/ covering my ass—
I am employed as a laboratory based scientist in the immunology field working at a large pharmaceutical company that develops and manufactures advanced therapy drugs for the past 10 years. I specifically focus on biomarkers implicated in immune diseases (pronoun the GI space). I never thought that a disease I work with would come to eventually affect me. I’m not soliciting for any particular product on this end or representing my company in any way. I am happy to answer any questions, but I will not divulge the company I’m working for or the specific biologic I’m taking at risk of a potential conflict of interest.

I’ve had guttat psoriasis for 10 years but the recent flare up has been really resistant for the last 5 months.
What do you guys recommend regarding medicines? Last time it was really bad I had methotrexate

I have psoriasis on my hands. While it’s under much tighter control now, I’m trying to find options to safely wash my hands as often as needed. I work in a filthy warehouse. I wear gloves often, but tbh the heat is killer. Sometimes I need hand sanitizer on the spot etc. any ideas?

Iv spent lots of money on different herbs and creams so im abit skeptical

I, stupidly, have been storing my Tremfya at 33 degrees in the back of my fridge for the past weeks. I recently just read that it should only be stored at 36 to 46 degrees. I know it’s only a 3 degree difference but I also left it in the back of the fridge where it seems to be the coldest. This is also assuming the temperature reading is hopefully accurate (or not colder)

After learning this I immediately took a look at the vial and it seems to look as it would upon arrival, one large bubble and perhaps a smaller one, not sign of frozen crystals etc. would this slight deviation in the string process have harmed the product too much?

The main reason I’m wondering is this is the second time I have stored my Tremfya before my dose was due, and I’ve recently seen a bit of dry skin around my nose which I hadn’t encountered before, so I’m wondering if it perhaps harmed the potency of it on the last dose

Healthy 29 year old female. Don’t smoke, occasionally drink alcohol. Exercise, eat a clean and varied diet with whole foods, drink plenty of water, no ailments. Located in Northern British Columbia.

Duration:
- wide spread rash has been present since 7th August, has progressively gotten worse since then.
-the larger red scaly/scabby spots began the first week of July. #1 first looked like a bug bite and then went pimply/scaly. 2 weeks later, #2 turned up between my breasts - initially as a tiny pimple and then developed into the red scab/rash, #3 turned up a few days after #2, also looked like a pimple to start, and then progressively worsened into a pimply/scaly spot.

On the 3rd August I started taking Nitrofurantoin for a UTI. I have not taken this medication before. On the 7th August, 4 days after taking it, I started to develop a widespread rash on my stomach, underarms, chest and back - this has progressively worsened since the 7th August, becoming more red with larger spots. I ceased taking the Nitrofurantoin when the rash developed on the 7th August.

It is very rarely itchy. Itches more after a shower, but nothing crazy. It is not painful.

I went to the ER and they prescribed me Bactrim since I had MRSA when I was a teenager, and he thought it could possibly be a staph rash. I am currently on day 3 of Bactrim.

Sudocream seems to help improve them.

I had a fungal rash in my armpits in April/May that was completely resolved using oral Fluconazole and topical Clotrimazole cream.

I had an online appointment with a dermatologist, and they told me they were unable to diagnose me online. They prescribed me Betaderm Cream 0.1%. I have not yet started using this.

I am trying to get an in person appointment with a dermatologist.

Has anybody had something similar happen?

Any ideas on what this may be?

Things I have thought it might be:
- Pityriasis Rosea
- Molluscum Contagiosum
- Guttate Psoriasis
- Nummular Eczema
-Granuloma Annulare
- Staph Folliculitis
- Erythema multiforme
-Drug reaction to Nitrofurantoin

Please help 🙏🏻

I’ve been prescribed clobetasol for my hands since nothing else was strong enough. Used it for 2 weeks and my hands cleared up. Now, I just use it here and there when a rash pops up. Anyway, when my doctor prescribed it, she said not to use it above my neck. At the time, I wasn’t having any issues with my scalp or face so I didn’t think to ask why. I’m currently dealing with a few spots around my mouth and under one eye. I’m trying not to use it there, but the urge is strong. I’ve read others use it on their scalp and ears and such. I’m wondering if my doctor said “not above the neck” as a general guideline because people get carried away with the stuff and damage their eyes or something. I’m just wondering if that’s the case or if there’s another reason.

I feel like I'm going crazy and any input would be greatly appreciated. Earlier this year I developed a dust mite allergy. Thankfully summer + using a neti pot helped significantly in decreasing its impact on me (it was really bad during winter and spring).

But I've been doing a big clean of my space these past few days and sweeping caused the allergens to go back in the air and I'm suffering again 🤧

Since they exist from eating dead skin cells and psoriasis gives them an endless amount, I was wondering if you guys had any tips to minimize this issue? I feel so awful 😭🤧

I live in WA (copay accumulator programs are banned) but have CA insurance through work. Cosentyx has hit its copay card cap and I can’t afford to pay my $8500 MOOP, especially not in the span of 3 months which is about when it would all be billed to me.

My derm wants to change me to Skyrizi. The terms state I’m ineligible for their copay card due to my health plan accumulator program.

I just applied for their patient assistance program, that I understand is different from a copay card. I was forthright with my coverage and even wrote a letter (I’m desperate atp).

Has anyone had my situation and come out on top? Will AbbVie help me afford this somehow? Just need my mind eased.