Psoriasis [PLEASE READ FIRST POST!]

Elizabeth Lee49 said:Look, we have to beat PSORIASIS; we can't let it wreck our lives, we have to be the ones to take it down if we want to actually live alongside it, that's what I told myself back when I was 23 and dealing with a massive flare-up, I barely made it out alive, and even though it's still hanging around today, it's nothing compared to how bad it used to be—it just bugs me a lot on my elbows now, but honestly, those patches from China I mentioned before? They keep it totally under control.👍

Exactly, and hey, thanks for the pep talk and the support... my whole goal is just to tame this thing, you know, get it under wraps and at least nudge it into a milder form... you mentioned earlier that if I remember right, you're a beautiful young woman of 35 and the aesthetic side of it really gets to you while you're fighting to keep it in check...
well, personally speaking, I’m just some guy, maybe not even a good-looking one, but I'm 34, and if I wasn't dealing with this psoriasis nonsense, I could probably be a model😎(by the way, without the skin issues, I look like I'm 25) but honestly, I wouldn't trade my current job at Walmart for a modeling gig any day of the week😬 and yeah, I'm doing everything I can to rein it in and get it to a manageable stage, but right now, things have hit a bit of a wall...

Anyway, thanks to everyone for the advice (which I definitely need) and for the encouragement (which is also huge, especially right now)👍

Chris Morgan67 said:Hey... I honestly feel so bad seeing how this sickness just absolutely hammered you. I know it might sound totally ridiculous, but you seriously have to find a way to force yourself to chill out about it. How can I even put this into words? You just have to, like, internally accept that this state exists and make peace with it.

Look, I’ve been exactly where you are—I mean, I had my entire body covered in this stuff, it was a total nightmare. Honestly, if I were you, I’d just bite the bullet and start phototherapy right away, then get on those creams to finally soothe your skin so you can just move on with your life and stop worrying about it.

Oh, please, stop whining to us! Seriously, quit the pity party because we're all stuck in the exact same crap here.😁

Heh, thanks Chris Morgan67!

Look, regarding all this crap we're talking about, I totally agree that we’re all just stuck in the same pile of garbage—it’s just that some people are dealing with it because of their own bad luck, while others are just falling for whatever nonsense they read in some random article... 😬

Honestly, we all just need to find some way to stay afloat or, better yet, figure out how to keep ourselves as thin as possible. 😉

Yeah, tell me about it.

So, I’ve been loading up on goat cheese, bone broth, chicken breast, and whole wheat pasta, but for some reason, I just can't seem to put the weight back on, even though I’m eating like a beast...
(I'm still 15 pounds short of my target weight.) I'm 6'2" and after all this detoxing and changing up my diet, I've dropped down to about 160 lbs, but I really need to hit 176 to look good and actually feel like myself. Honestly, it's got me a little worried that there might be something else going on under the hood...😕

Hopefully, things will just level out soon.🙄

Elizabeth Lee49 said:I haven't even told you guys this part yet... but honestly, looking at my own family, nobody else deals with psoriasis. It’s just me! So, really, there are no set rules to follow here... none at all...

For Gregory Mendoza3... I'll go ahead and ask around about those injections!🙂
Rules don't really exist, I mean, that's just how things stand... but honestly? I've always felt like all of this has just been hidden away until now because people were too old-school or just didn't get it. It used to be that only one spouse even knew what was going on... just kept between the two of them... turns out that was just a lack of understanding...
Oh, man... my heart just aches for young Verter! Seriously... poor guy...😘 So, I was just talking to my uncle—he’s turning 80 pretty soon, can you believe that?—and he told me this crazy thing about family history... apparently, my dad’s uncle had a much tougher time with this, a way more severe case... and if he were still around, he would've actually been older than me... just wild how things line up like that...
Man, if he were still around today, he’d be 100 years old... can you imagine? My uncle actually dealt with a mild case of this from a mechanical injury once upon a time, and he managed to get it totally IZLEČEN... all thanks to some advice from a hunter over in Italy (and no, I don't mean anything to do with HUNTER!)...🙂 ...with some gun oil. My dad didn't have a clue about any of that stuff...
I should probably add that I had it on my hands too... my hands were a total mess! It all hit me about three years ago. Back then, I was driving a heavy-duty log truck equipped with a hydraulic crane, so I was constantly covered in grease and oil... just soaked in it. Honestly, I think that’s what caused it, because I didn't even bother with any kind of treatment at the time...
Since I already brought up the whole idea of hiding things... how do you all other members feel about that? What’s your take on it?! Write back!
I honestly feel like it’s so important not to hide who you are... because trying to mask it is just such an exhausting burden. Me? I haven't hidden a thing from the very start! At first, my mom thought it was a bit weird, and then my friends were kind of skeptical too, but everyone eventually got used to it. I have a really solid, chill group of friends now, so they don't even blink anymore... they actually embrace it. Plus, let's be real, I'm quite the hit at the clothing-optional beaches!😉 Reading between the lines here... I can see there are some different opinions floating around. Honestly? My advice to anyone hiding how they really feel is just to stop right now! Seriously, it’s so much easier that way... you aren't feeling all that pressure, and you won't deal with as many attacks! Plus, you actually get to the good stuff faster—like real info on medications and actual experiences... it just flows better!
I mean, I’ve said my piece, but honestly... we should just be grateful this whole mess isn't lethal!!! So we got hit with it, big deal. We still have our entire lives ahead of us to deal with this thing, chat away on these forums, live life to the fullest with our people, and maybe—just maybe—occasionally slip up a little bit... you know, just enough to remind ourselves to watch those bad habits!👍 Just imagine... I mean, really think about those poor souls who are facing the end... people whose life's hourglass is almost empty, with only a few tiny grains of sand left spinning through... it's just so heavy to think about...😳
Does anyone know of any kind of support group or meetup for people dealing with this... you know, besides just seeing specialists at a clinic? Like, somewhere we can actually hang out and talk? Anywhere at all?

To brings to mind my own experience, where I actually had it all over my hands too... It hit me about three years ago. Back then, I was driving a heavy-duty logging truck equipped with a hydraulic crane, so I was constantly coated in grease, oil, and diesel. Honestly, I suspect that’s what triggered it, since I wasn't using any kind of medical treatment at the time...

Oil is actually quite famous for its beneficial effects on skin changes caused by psoriasis, neurodermatitis, and other conditions. In fact, an entire wellness retreat, the Naftalan Spa, bases its whole therapeutic approach on petroleum, oils, and specialized creams. My father used to go there for treatment, and he tells me that people even travel all the way from Russia just to visit the Naftalan Spa. Of course, you start seeing results pretty quickly once you begin the therapy, though how long the remission lasts really depends on your individual constitution...

Since we're talking about hiding it—how do the rest of you feel about that? What's your take?
I truly believe it is vital not to hide it, because keeping secrets like that becomes such an immense psychological burden. Personally, I haven't hidden it from day one! At first, it was a bit unsettling for my mother, and eventually, my social circle found it strange too, but everyone eventually adjusted. I’m lucky to have a very grounded group of friends...

,

In the beginning, I felt absolutely terrible, almost as if I were carrying some sort of plague... but later on, once I worked through things internally and realized that life can always be harder—I mean, people live full lives without limbs, sight, or hearing—I understood that my situation isn't nearly as tragic as I had conjured up in my own head. After all, as they say, this isn't something that kills you!

My advice to anyone trying to conceal it is to stop immediately. It’s much easier that way; you aren't living under constant pressure, which means you face fewer judgmental stares! Plus, you'll find information regarding potential medications and personal experiences much faster...

That is so true; some people notice the skin changes instantly and come running up to me with their stories—"Oh, my nephew had this," or "My grandson dealt with that"—and I've ended up receiving all sorts of advice about herbal teas, dietary changes, and so on...

I've written quite a lot, but I must add that we should actually be grateful that this damn thing isn't fatal!!! We've been dealt this hand, so what? We still have our entire, long lives ahead of us to deal with it, to chat on these forums, to live happily with our loved ones, and perhaps, every now and then, indulge just a little bit—just enough to watch our bad habits!👍 Just imagine those patients whose hourglass is nearly empty, with only a few grains of sand left...😳

I couldn't agree more.

Does anyone know of any support groups for people like us (aside from specialist clinics) anywhere?

I think I heard something about that once; it might be worth looking into, as I am almost certain there is a patient advocacy group out there somewhere!

THE AMERICAN PSORIASIS ASSOCIATION: Šalata 4, Washington, D.C.

Respect to my fellow sufferers out there!
So, this is my first time jumping onto this forum, and honestly, I’m here for the exact same reasons you all are. I’ve been battling psoriasis for over 15 years now, and just like many of you, I feel like I’ve tried absolutely everything under the sun, yet unfortunately, it’s still hanging around. 😠 I’ve gone through the whole gauntlet—from creams and lotions to pills and radical diet changes—and in the beginning, they even misdiagnosed me with seborrheic dermatitis instead of actual psoriasis. Nothing seems to stick for more than a couple of weeks before it flares back up. Lately, I’ve been digging into more "alternative" ways to tackle this mess, but so far, nothing has truly hit the mark. Acupuncture helps a little bit, sure, but the relief is fleeting and, let's be real, it's incredibly expensive. My best luck was actually with some pills (high-end German ones that cost a ridiculous $180 a box for 100 tablets), though I eventually found a doctor who could get them for me from the Netherlands for about $60 a box. Even then, it was a massive drain on my wallet because I was taking up to six of them a day. Recently, I was chatting with an Austrian coworker of mine who supposedly cleared his psoriasis using that same method, and he hasn't had a flare-up in a year. The only catch? He went way beyond the "recommended" dosage (that 6-pill daily limit). He did an intense six-month run with them—he used to get them at a pharmacy in Vienna for $60 a box too—and it worked for him. Whether it'll come crawling back or not, nobody knows. Apparently, the secret sauce in those pills is some kind of fumoric acid that our bodies supposedly don't produce enough of, or maybe not at all... I can't even be certain.
Like I said, it didn't completely wipe the slate clean for me, but it did make me look a hell of a lot better... the patches weren't that angry, bright red color anymore, just a pale pink, and in some spots, there was nothing at all. I even tried those aggressive liver cleanses, cutting out all the sweets, sodas, booze, pork, and all that other junk, but nothing really moves the needle. To be honest, I’ve almost made peace with living with this thing, but part of me is still out there searching for a real way out...🙂

So now I have a question for the folks over in the States: there’s this clinic called "Bioelixir" based out of Belgrade (they moved there from Pančevo a few years back), and they supposedly boast a 90% success rate when it comes to treating psoriasis and other stuff like sinusitis or eczema. I’m wondering if anyone here has actually pulled the trigger on this? The reason I'm asking is that they just opened up an office right here in Washington, D.C., so I went in for a consultation ($50) just to see what the deal was. The doctor was perfectly pleasant enough, but honestly, she didn't tell me anything about psoriasis that I hadn't already figured out myself. Their whole treatment logic is basically a three-pronged attack: you drink their special elixir, they put some drops in your nose, and then you slather yourself in cream. You have to go to their office for the elixir and the drops, while you handle the cream application yourself at home. The initial therapy lasts seven days—you're heading in there every single day—and then for about two months, you actually have to show up twice a day for a couple of days to apply the cream, because apparently that's how long it takes for the skin to fully regenerate (or so they claim). Now, the real reason I haven't jumped on this yet is the price tag. Here in the US, it’s going to set you back $4933 which is, like, 2000 bucks. They do offer payment plans through credit cards, but look, I’ve spent so much money on "miracle cures" already that if I’m dropping that kind of cash, I want some sort of guarantee... you know, like being good for 3 to 5 years, or if it flares up again, you get the follow-up therapy for free... 🙂 🙂 That’s why I’m really curious to know if anyone on this forum has ever actually tried it....

copperviper102 said:So now I’ve got a question for the crew over in the States: there’s this clinic called "Bioelixir" in Washington, D.C. (they moved there from a place near Chicago a few years back) and they claim to have like a 90% success rate when it comes to treating psoriasis and all sorts of other stuff like sinusitis and eczema, so I was wondering if any of you guys have actually tried them out... Yeah, seriously, I’m dying to know if anyone on this forum has ever dealt with them....

Look, I wouldn't advise playing games with those people if I were you... I stumbled across one of their ads for psoriasis a few years ago... and I started digging around online looking up the company name and the owner... and let me tell you, apparently he was sitting in a jail cell back when he was operating out of the Chicago area because he was nothing but a total fraud and a con artist...
and then he just moves on to bigger business, and now they’re running ads everywhere...

I’ll try to track down the link for that article... I think it was either some official court document or maybe an exposé in one of the major newspapers.

Maria Doyle27 said:Petroleum is actually well-known for its beneficial effects on skin issues like psoriasis, neurodermatitis, and other conditions. In fact, an entire spa facility, the Naftalan Spa, bases its whole therapy regimen on petroleum, oils, and creams. My father sought treatment there once, and he mentioned that people even travel all the way from Russia to visit the Naftalan Spa. Naturally, you see results fairly quickly after starting, though remission really depends on how your body reacts...

Just a small correction: petroleum doesn't work for every single person dealing with psoriasis.👎 I know someone who had a terrible reaction to the Naftalan Spa and ended up with their psoriasis spreading even worse than before...

An older family friend also fled the Naftalan Spa after just a few days; he said the facilities and cleanliness were a total disaster...

Petroleum can be quite aggressive on the skin and tends to dry it out. It’s certainly not a miracle cure, and my doctor wouldn't even dream of recommending it to me right now...

I'm glad if the Naftalan Spa helped some people, but it's important to realize this is a heavy-duty therapy that can have side effects and unpredictable results...😉

As for my social life, all my close friends are aware of my psoriasis. I don't wear skirts because they aren't my style, but I head to the beach without any issues... I suspect the support from my partner helped quite a bit... 🙂

Maria Doyle27 said:Look, like someone already pointed out—this thing isn't going to kill you!

Psoriasis actually can be deadly.
http://www.psoriasis.org/about/psori...throdermic.php
http://www.psoriasis.org/about/psoriasis/pustular.php

I was reading on that site's forum that about 250 people die every year from psoriasis.👎
The real question is how many people take their own lives because of this disease.
Most people just deal with a milder version of this stuff, so they have absolutely no clue how dangerous psoriasis can actually get.

Elizabeth Lee49 said:Just like all of you, I’ve tried everything under the sun! From heavy-duty meds to my grandma’s old-school home remedies. Honestly, I’ve realized that what works usually depends on what you personally feel helps. For me, I use black soap from the Doctors, then follow up with Johnson's baby cream after a shower. I take Vitamin A regularly now, use these patches, and occasionally dab on some butavat cream—which actually works great when you first start using it. Give this routine a shot; maybe it'll help someone out!

🙂 Soap, baby cream, and Vitamin A? That sounds fine. I haven't heard much about those patches, though. But that butavat ointment or cream? Man, that stuff is 👎 poison for your skin. Seriously, I’d advise staying far away from it. I have no clue how it even ends up on our shelves. A pharmacist buddy of mine told me it comes through the black market. If I remember right, the box even had a pharmacy label on it with prices listed in Euros (in a Greek format). I actually reached out to a top-tier dermatology professor at a major clinic in Skopje, and the second I mentioned I was using it, he told me to stop immediately. My next prescription ended up being Neotigason.
My advice? Talk to a real dermatologist before touching butavat, and please, don't recommend it to anyone else. I think Gregory Mendoza3 had some issues because of it too.

Robert Clark2 said:🙂 Soap, Pavlović’s baby cream, and Vitamin A—that’s all fine. I haven't used those patches, though. But as for the Butavat ointment or cream... honestly, that stuff is 👎 pure poison for your skin. I’d strongly advise staying far away from it. I have no idea how they even get it onto our shelves here. A pharmacist friend mentioned it likely comes through black markets. If I remember right, the packaging even has pharmacy labels on it with prices listed in Euros (using Greek script). I actually reached out to a top dermatology professor at a clinic in Skopje, and the second I told him I was using it, he strictly forbade it. My next prescribed treatment ended up being Neotigason.
My advice? Talk to a dermatologist before touching any Butavat, and please, don't recommend it to anyone else. I think Gregory Mendoza3 had some issues because of it too.

Thanks for the heads-up. Those patches being mentioned are from China; I'll try to bring you their ingredient list tomorrow once I get to work (p.s. I'm typing this from my job). Thanks to everyone following along... I've been battling psoriasis for years now, but nobody among those "normal" people really understands. We really needed a chat like this... we're stronger together since we're all dealing with the same struggle

Gregory Mendoza3 said:- I'm not really sure what kind of soap we're talking about here... I haven't heard of "Doctors" before... personally, I stick to stuff based on extra virgin olive oil, and when I can't find that, I just go with Nivea baby wash for sensitive skin.

- As for Vitamin A, I just get my beta carotene from natural sources, like carrots and roasted squash... plus I take brewer's yeast too.

- What's the deal with those Chinese patches? What's the actual active ingredient... is there some other version, maybe an ointment or something similar, for when you need to treat larger areas?

- Regarding that Greek Butavate, I actually preferred the ointment over the cream. In the beginning, it worked wonders for a little while, but then, well, just like everything else, it stopped working and actually caused a flare-up.

Donech, I have a big exam tomorrow... I mentioned that to Robert Clark2, too. Thanks everyone for the support, it really means a lot to me. Up until now, I haven't had anyone to talk to about this. My husband accepts me exactly as I am, but I still struggle with feeling like I'm not pretty enough for him... even though physically I look fine. This psoriasis has just been draining the life out of me for years...

Gregory Mendoza3 said:- I'm not really sure about this soap... I haven't heard of "Doctors" before... personally, I usually stick to stuff based on extra virgin olive oil, and when I can't find that, I just grab some Nivea baby wash for sensitive skin.

- As for Vitamin A, I try to get my beta carotene naturally through carrots and roasted squash... plus I take brewer's yeast too.

- What's the deal with these Chinese patches? What's the actual active ingredient... and is there any other version, maybe an ointment or something similar, for treating larger areas?

- Regarding that Greek Butavate, I actually found the ointment worked better for me than the cream. In the beginning, the results were amazing, but just like everything else, it eventually stopped working... and then the psoriasis flared right back up.

The DOCTORS line is a whole collection of soaps, and they have one specifically for psoriasis and eczema made with coal tar. It's a black soap and it isn't harsh at all when you're washing—it doesn't dry out the skin or cause itching, and your skin feels soft after you're done. You can find it in pretty much any drugstore.

A tiny correction here... just a small observation, really... but a minor adjustment isn't going to be a magic bullet for every single person struggling with psoriasis... especially when it comes to things like Naftalan...👎 I know... One... I can't help but think about that poor soul who had such an absolutely ghastly reaction to the Naftalan Spa treatment, only to find that their psoriasis actually spread even further after the ordeal... it’s just one of those things that makes you wonder where we're all headed with these "remedies"...

That one highlighted word is absolutely crucial here, because strictly speaking—if we’re going to use any actual statistical terminology—you simply cannot draw sweeping conclusions about an entire population based on the experience of just one individual... It's fundamentally flawed logic. Personally, I don't know a single soul who has experienced those kinds of reactions to Naftalan Spa treatments, yet hundreds upon hundreds of people travel to Naftalan Spa every single year, and they keep coming back time and time again...

An older gentleman, a dear family friend of ours, recently fled from the Naftalan Spa after only a few days... he was absolutely adamant that the conditions there were an utter catastrophe and the level of cleanliness was simply non-existent...

Well, if he was actually expecting a Hilton, then thank God he managed to make a break for it... honestly, my own experiences—and those of several people I know personally—have been nothing but positive, which is exactly why I ended up heading over there myself after they talked me into it...

Petroleum products are incredibly aggressive when applied to the skin; they strip everything away and leave you feeling utterly parched... and honestly, if my doctor were sitting here right now, there is absolutely no way they would suggest using something like that as a final solution for my current situation...

I can't help but harbor some serious doubts that the alternative route isn't actually the superior path here—especially when you consider that those corticosteroids seem to pack in more side effects than they actually do to alleviate psoriasis symptoms... honestly, I feel physically ill just reading through the long list of potential complications caused by Diprosalic, Elocom, or Psorcutan... blah, blah, blah... which is exactly why I haven't touched them in over a year now. If all else fails, then sure, maybe they're a last resort—but typically, people only turn to Naftalan Spa therapy when their cases have become absolutely dire... personally, I’m planning to start my own three-week regimen, and regardless of how it unfolds, I will be sure to report back with my results and any side effects I might encounter!🙂

Grace Anderson said:Psoriasis can actually be deadly.
http://www.psoriasis.org/about/psori...throdermic.php
http://www.psoriasis.org/about/psoriasis/pustular.php

I read on this site that about 250 people pass away every year due to psoriasis.👎
The real question is how many people take their own lives because of this condition.
Most people just deal with a milder version and don't even realize how dangerous psoriasis can truly be...

Look, man, that’s not cool.😕 We're all here trying to manage our lives while dealing with psoriasis, and you're coming at us with this heavy depression stuff.☕

Still, those cases are rare... But honestly, talking to others who get it and sharing what we've been through makes it so much easier to accept having this disease. It really helps us avoid falling into those dark, fatal feelings...🙂

Does anyone actually know anything about how St. John's Wort or even an ointment made from it works on psoriasis...

Has anybody here actually tried this stuff yet?

Grace Anderson said:Psoriasis can actually be deadly.
http://www.psoriasis.org/about/psori...throdermic.php
http://www.psoriasis.org/about/psoriasis/pustular.php

I was reading on one of those forums that about 250 people die every year from psoriasis.👎
The real question is how many people end up taking their own lives because of this disease...
Most folks just have a milder version of it, so they don't even realize how dangerous things can get.

If there are around a million of us out there on this big old planet (not totally sure on the math!), then that number is honestly tiny!🙂 I'd bet most of those people aren't getting any medical help or anything at all! And hey, people pass away from much smaller things too...
When it comes to suicide, it isn't really the psoriasis itself—it's more about the mental state of the person suffering. People like that are always looking for reasons to struggle anyway.
Man, if only all the dangers in my life were limited to just psoriasis!👍

Listen, everyone... we’re just regular people here dealing with some body image issues and aesthetic struggles. So, let's keep things positive. Please, don't bring up depressing topics or—God forbid—talk about suicide. We're all normal folks here, and we need to live our lives normally too. Just keep your heads up...