silverscout91 said:I need a little help—does anyone know which agency handles trips to the Dead Sea for psoriasis treatment?
It’s not really an agency thing—you should probably just reach out to Doctor Andrew Stanimirović at 01/3820-077. He has a practice over in Badalicev in Brooklyn (NYC), though I can't recall his exact office number offhand. 😢 He'll likely handle all the arrangements and reservations for you, and he can walk you through everything you'll need. I think the only thing you'd really need to do yourself is book a flight to Los Angeles. As far as I know, that's the way to get to those specialized clinics in Israel—at least, that's how I handled it. If you need anything else, feel free to ask. Best of luck! 😍
Maria Chavez55 said:I scheduled my trip to the Spas for May—it's a three-week treatment plan. My goal before then is to get the skin on my legs down from scaly to just red (ideally through more natural means), so their treatments can actually work effectively. This is my first time going, and I'm putting a lot of hope into it. 😉 In the meantime, I’m battling this itching—honestly, it’s way more frustrating than how everything looks, but oh well. I can't help but feel a bit bummed that I only started dealing with this annoying condition after turning 35... though I suppose I should just be grateful. 😉
I actually managed to move my psoriasis from being scaly to just red within a month using nothing but Vaseline—so, highly recommend that. For me, the itching hits hardest right when my skin starts drying out, so I just keep applying Vaseline constantly to stay ahead of it. That usually does the trick for the itch. Good luck!
Maria Chavez55 said:Quick question for the Vaseline users here😁—how long and how often should I be applying Vaseline to those scaly patches if the goal is just to get rid of the flakes while leaving the redness? Also, should I be mixing it with some kind of nourishing or neutral cream, or just stick to the Vaseline alone?
In my case, I’ve been using nothing but Vaseline for about two months now. During the first month, I still had some redness, but as long as you stay on top of hygiene, the flaking stays away. Over the last month, even the redness has calmed down, and some of the areas where I had thinning skin look totally normal again. Nothing new has flared up in these two months. I use only that—nothing else—and after showering, I rub in some local olive oil. I haven't started using castor oil yet, but I probably will. I apply the Vaseline once a day, at night—if I do it in the morning, it just sticks to my clothes. I think that cabbage cream > uses might be good too, since it's all-natural. Best, 😍
Sophia Martinez3 said:Hey, Happy Holidays! Yeah, that’s definitely the Pavlovic ointment. Thanks for the tip—honestly, I feel a bit bad that you’re in a different boat than us guys. I know things get a bit more complicated for women when dealing with Neotigason, but if pregnancy isn't on your radar right now, I’d really recommend it. Don't listen to doctors too much about those long timelines—like, three years? Please. You'll probably notice things looking better after just ten days or so. To be blunt, I don't even bother going to them anymore; I honestly think we know more about psoriasis than they do at this point. About five years ago, I was actually staying at the Military Hospital in New York City, and there were times I’d even help out some of the residents while they were drafting discharge papers for psoriasis patients. Best...
Hehe, thanks!! Well, I’m still pretty young—almost 20—so I won't even be thinking about pregnancy for a few years yet 😁 As for the meds, I used Neotigason for two years and didn't see any real results; in fact, once I stopped, I actually felt better because all those side effects finally cleared up. I totally agree that sometimes we know more than the professionals—after all, none of them actually live with psoriasis, they just study it. Best, 😍
Sophia Martinez3 said:Hi everyone dealing with psoriasis—I figured it was finally time to jump into the conversation about our shared struggles. I've been dealing with this for 25 years now, and I truly believe it’s a highly individual thing—whether a specific medication or a cream will actually help us feel better or just keep things under control. In my case, it’s Neotigason—just that, and nothing else. I use it for about six months at a time, then take a break to let my system clear out. My body seems to have adjusted to it quite well, too; even at a daily 50 mg dose, I don't see major spikes in my cholesterol or triglycerides. I've been using it for five years total and I'm very happy with the results—I managed to go eight months totally clear, which feels like a massive win. Dealing with topical creams is such a hassle, so the capsules have really made my life easier. The only minor issue is how dry my skin gets after showering, so I use a neutral ointment like Pavlovic—anyway, that's just my experience... Best to everyone!👍
Hey there, welcome to the group—it's great to have you here. Just a quick suggestion: maybe try some plain white Vaseline whenever your skin feels dry. It works wonders for me. Of course, everyone reacts differently, but it's inexpensive, neutral, and since it helped me with similar issues, I suspect it might work for you too. Also, is that Pavlovic ointment you mentioned? If so, that's fine by me, though personally, I find Vaseline a bit easier to spread—it just feels better to me. Regarding the Neotigason, I think it takes about three years for the body to fully clear it out—at least, that's what my doctor told me when she was warning me about pregnancy, since it's a teratogen. 👎 Anyway, I'm really glad it's working for you. Cheers!!
I figured I’d jump in here—just wanted to let you know I’m going through something pretty similar. I’ve been dealing with vulgar psoriasis for almost 40 years now, and about three years ago, erythrodermia and arthritis kind of hit me all at once. At that point, my skin started thinning out so much—honestly, it felt no thicker than a sheet of cigarette paper. My feet were swelling so badly that I couldn't find any shoes that actually fit. Since it was summer, I ended up walking around in wool socks just to cope because I was always freezing—my body temperature just wouldn't stay steady. Where I am now, I have to say I’m grateful for Neotigason, starting with a 30mg dose. In the meantime, I’ve been using white petroleum jelly mixed with olive oil and St. John's Wort oil.
I think I recently read somewhere—maybe in the New England Journal of Medicine?—that adding about 3-5% salicylic acid to petroleum jelly works well for the body, and for the scalp, mixing salicylic acid into olive oil might help.
That’s all for now.
Best regards!
I'm sorry I didn't get back to you sooner, but unfortunately, we’ve been in the exact same boat—except I couldn't even stand up because the pain was so intense, and since I have anemia, my iron levels dropped to 2, which caused me to pass out constantly. I completely agree about the coldness, too—I actually ran fevers as high as 105.8.😁 My goodness, I even took photos of my hands and legs while I was in the hospital; they were swollen like balloons—I looked like I had gained 200 pounds.🤣 Apparently, that swelling happens due to a protein deficiency, so the doctors in the hospital had to supplement my intake.
Could you tell me if your erythrodermia flared up right after you stopped taking corticosteroids? I'm guessing you must have been using topical creams for a long time if your skin has become that thin. Luckily, my skin has recovered and feels like a normal thickness again.😉 Oh, regarding what you read about adding salicylic acid to petroleum jelly—that’s actually used for those thick scales on the body, and it works well for that. Personally, I don't deal with very thick scales because I try to keep things under control with good hygiene. For the scalp, you could use salicylic acid in olive oil or even lard, then cover it with a shower cap. I prefer using lard—it’s just easier for me. I really hope you're doing better now and that things aren't getting worse. Take care!😍
Whatever you do, don't use lavender oil—it can cause some pretty bad skin irritation. St. John's Wort isn't an essential oil, and I’d definitely recommend using it. 👍 You can apply it as much as you want without needing to dilute it; it’s great for soothing the skin and helping little scrapes heal. I use it all the time.
Just one thing to keep in mind—you shouldn't go out in the sun after applying St. John's Wort, because it makes your skin super sensitive, which might lead to spotting. 🙂
Right now, I'm using Lush Dream Cream and Nivea body oil, which I apply to damp skin right after my shower. 🙂
Sorry about that link issue, I must have messed something up. Here it is again: www.histoterapia-placentaria.cu
Thanks for the advice! I usually stay out of the sun anyway since my skin is quite sensitive, so I'll start leaning on that St. John's Wort oil. Everything is fine for now, though I did just start coughing and sniffing today—if I catch a full-blown cold, I'm toast. Best, 😍
It’s me again—so, I ran into this woman yesterday (she’s about 70) who had been receiving treatment in Cuba, and she hasn't dealt with psoriasis in 16 years. She mentioned she tried just about everything imaginable before finding her way to Cuba—not that I want to go on and on about it, since she wasn't exactly an open book, but here is a link if you guys want to see what people are saying over there
I also have a quick question for everyone here—since I’ve managed to clear away all the scaling using just plain Vaseline and olive oil, I feel like I have things under control. The main issue now is this redness, which I just can't seem to get rid of with the Vaseline alone. I was wondering if maybe some essential oils, like lavender or perhaps St. John's Wort, could help soothe or fade it? I’m just not sure how to dilute them properly—or if it would even be a smart move to try. Thanks, and best wishes! 😍
Emily Johnson9 said:Hi everyone. Back in November, I was dealing with some gum inflammation, and my doctor sent me for blood work because she mentioned I looked pretty pale. The issue is, for about two weeks leading up to those tests, I couldn't really eat anything because of the pain in my gums. When the results finally came back, my iron levels were sitting at 2.5, while the normal range is supposed to be between 8 and 30. People have been telling me for three years that I look washed out, but I never actually connected the dots to this. My doctor wrote me a prescription for these tiny, pathetic little iron pills and told me I should get retested once I've finished them. I went to the local pharmacy since my aunt works there—she’s a pharmacist—and she basically agreed that the pills the doctor prescribed were pretty useless... I switched to something stronger, like Ferrogreen, but it just gave me terrible stomach aches and digestive issues. Eventually, I started taking Ferrogreen tablets instead. They're great—natural, easy on the stomach—but I'm halfway through the bottle now and I don't feel any different. On top of that, I've been trying to eat foods high in iron, but I'm not seeing any improvement. I read somewhere that you're supposed to take Vitamin C along with iron to help with absorption. Is that actually true? I'm honestly terrified of what happens if even this doesn't work. And I have no clue where 😕 this damn anemia even came from; I feel terrible, like a walking corpse. I'm worried this might be something more serious, like an underlying disease, and it's making me incredibly anxious. To be honest, I'm becoming afraid to even see doctors anymore. I also deal with very heavy, painful periods—could that be linked to all of this? Thanks to anyone who can share their experiences or thoughts.
If you were prescribed certain types of iron tablets, you might not need Vitamin C, but with others, it's definitely necessary. Iron can be really tough on the stomach since you're usually supposed to take it on an empty stomach in the morning, but if you can't handle it that way, you can try taking it after a meal. If you take it consistently every single day, you should start seeing results in about a month, so plan to head back for blood work then. There's really nothing to worry about—these supplements are designed to replenish your iron and they will help. And please, don't be afraid to see the doctors; we aren't children.🙄 With an iron level of 2, I could barely make it to the bathroom without feeling dizzy and nearly collapsing. Anemia can show up because of a specific diet, or if you're vegetarian and aren't getting enough iron from meat. You actually pointed out a very likely cause yourself: those heavy periods. Just keep taking the pills as your doctor recommended. Hang in there!👍
Lawrence Ramirez3 said:Could you tell us a bit about Israel? What was it like there—any real fear regarding terrorist attacks? How did the therapy affect the actual psoriasis versus the psoriatic arthritis? Are any Americans traveling there for treatment? If it isn't a secret, what’s the cost? If it is, maybe just a ballpark figure. What exactly is included in that price? How long does the relief last 😁—as in, how soon do the first symptoms return? Do many Americans head over there for these treatments? Regarding those neutral creams and ointments, dermatologists also mention that even something like Vaseline works well. Best regards 🙂
Honestly, there's no real fear; it's a tourist destination and everything is under control. They check passports at every transition between cities, but that's about it. And everyone walks around with guns on their hips, I guess. 😁 As I mentioned before, in my specific case, the treatment didn't quite work because I ended up with erythrodermia—which basically means everything flared up intensely since I had been using corticosteroids for a long time and then stopped them too abruptly. The only silver lining after the erythrodermia was that I was totally clear of psoriasis for about a month. As for the arthritis, the climate worked wonders—for about five months, I didn't have a single aching joint, not even needing a single painkiller. Quite a few Americans head there—lots of people with vitiligo because the results are great, and plenty with psoriasis too. One night, there were fifteen of us sitting at the same table. The price varies; the hotel stay is paid separately from the actual therapy, though there are different treatment combinations available. The basic package is just sun and sea, which is essentially the foundation for all conditions. I wanted extra stuff specifically for the arthritis—things like various massages, baths, mud applications, oils... I don't even know anymore since I couldn't try them due to the erythrodermia—and that, of course, costs extra. I think the whole thing came out to around $3,000 $0.00 (don't hold me to that, though, as my mother was the one paying 😁), but it all depends on the regimen, so the basic treatment shouldn't be too expensive. With a single course of treatment (lasting 4-6 weeks), the condition usually improves by about 40% for most people, but you'd likely need to repeat it the following year to reach your goal, even if the skin cleared up completely. People generally go for treatment during the summer months, mostly from May through September. As for the staff, they are incredibly kind. The hotel manager would greet us with a "good morning" and ask how we were doing; they truly care about their guests. Even the doctor joked that he was going to learn some American English, haha. 👍 So, that's the short version. Feel free to ask anything else, though even if it wasn't a complete cure for me, I have such wonderful memories of Israel—especially Jerusalem. Cheers!!
Roger Garcia9 said:Regarding that acne lotion, I don't believe a prescription is required, though I suppose I can't be entirely certain about Clindamycin. In my case, I didn't actually receive a formal prescription; rather, I simply presented my medical history showing that this specific therapy had been recommended to me previously. As I recall, Clindamycin was available $13 whereas the lotion was closer to $6.75.
Clindamycin definitely requires a prescription, though it’s usually used for facial acne or maybe spots on your back—not really for boils. For boils, a sulfur-based ointment works much better. My doctor prescribed one to me once when I had an ingrown hair on my leg that started getting infected. It worked well if you just apply it and cover it with a gauze pad for a couple of days—just leave it there until the inflammation clears out. It helped me, anyway, though I only dealt with that once.
Maria Scott4 said:I’m asking for my grandmother—she’s 78 and has been dealing with leukopenia and thrombocytopenia for about ten years now, along with an enlarged spleen that’s grown quite large recently. Over the last two months, she’s had this severe inflammation in her left thigh, stretching from her hip down to her knee. Her primary care doctor put her on some pain meds (Tramadol, Voltaren suppositories), an antibiotic called Klavax 1000mg, and Myoflex. Unfortunately, the meds didn't really touch the pain, and the leg issue just kept getting worse. By February 8th, the pain became unbearable, so her doctor referred her for hospitalization at a nearby hospital in Des Moines. They ran an EEG, an X-ray of her hip, and a color Doppler ultrasound of her veins, but none of those tests pinpointed the cause. Since she has hypersplenism, the doctor suggested the enlarged spleen might be pressing on the lymph nodes/channels running through her leg, so she recommended we see a hematologist. I’m reaching out to anyone who might have some insight or expert advice—is there anything that can be done to help her, or at least manage the pain? Is there any way to actually shrink the spleen? Thanks so much in advance!
Unfortunately, it doesn't look like we have many specialists here. I wish I could be more helpful, but I suppose your best bet would be seeking a second opinion from a private specialist—or maybe looking for a consultation in a major city like Chicago, where you'd have a much wider selection of doctors than you would in Des Moines. I'm really sorry, sending my best.
Susan Scott5 said:I’ve dealt with jewelry allergies since I was a little girl—it’s just one of those things—so I pretty much have to stick to gold. I try wearing silver every once in a while, but most of the time it just triggers an allergic reaction for me. That said, if I can find high-quality, pure silver, I can usually manage it—right now I'm wearing this silver ring from a local jeweler that isn't causing any issues at all.
I can only wear earrings for about a day at most—after that, the itching and redness always start up. A long time ago, I was given some ointment—I guess it was just one of those things you had on hand back then. Betrion I was using a certain cream for those inflamed spots—but then the pharmacy ran out, so they ended up giving me a substitute instead. Nystatin—it’s one of those things you don't think about much until you actually need it, I suppose. It’s pretty straightforward, though—just a reliable way to handle certain fungal issues when they pop up. I’ve tried that ointment from Johnson & Johnson—it’s okay, I guess—but honestly? It isn't all that great. If you can track down some Betrion, though... that stuff is actually the real deal.
You can pick up Betrion at most pharmacies—you can even get it via prescription, I believe. I'm not entirely certain, though, whether it's classified as a corticosteroid or an antibiotic—maybe one or the other?
Chris Gray5 said:I’m talking about those massive, deep, subcutaneous bumps—the kind that never actually come to a head or let you squeeze them out, just stay buried under the skin. They stay inflamed and painful for ages, like a solid week, and then the redness and scarring linger forever... I’m talking nearly a year of marks...😢... It's not like I get a bunch at once, but because the redness takes so long to fade, it looks like I have a dozen different spots going on at the same time...
It’s honestly awful. I feel like I’ve been fighting this since I can even remember. Things actually calmed down quite a bit over the last two years—it even cleared up completely for a while, which was huge because that's when I started getting intimate with my boyfriend... But now it's back, and the thought of him seeing me like this absolutely terrifies me... 🙂
My skin is otherwise totally fine. No acne, no breakouts on my face or anywhere else on my body... just this one thing. And obviously, I’m super diligent about my hygiene...
Do you guys think I should go see a dermatologist? Has anyone else dealt with something similar, and if so, how did you actually fix it...?
Please, no mean comments. Thanks...
That sounds pretty typical for cystic acne. But tell me—is this happening constantly, or can you link it to something like PMS? Next time one pops up, just go see a dermatologist (if you're near a major center like the Mayo Clinic or similar) and please, don't feel embarrassed. Sometimes you need to run some tests, and honestly, a lot of this stuff can be managed pretty easily with a prescription. 🙂
granitegull3 said:I'm with you there—long-term, changing your diet is always going to be the real answer. But when you're already dealing with certain issues, I guess the quickest way to get the body to actually respond to that shift is through "cellular nutrition." It’s just easier for the system to process—highly assimilative, if you will—and it gets those nutrients to your cells way faster.
Lawrence Ramirez3 said:Reading through your post, I get the feeling you might have headed down a bit of a wrong path—I don't know, maybe you just placed too much faith in the doctors. Look, doctors are professionals and they likely know more than we do, but when it comes to psoriasis, even they can be pretty helpless sometimes. I suspect you should have leaned less on corticosteroids and focused more on neutral creams or those with a lower salicylic acid content. Also, since you're dealing with psoriatic arthritis, maybe petroleum would be a better alternative than going all the way to Israel? You could probably combine an Israeli trip with petroleum treatments. Petroleum has actually shown some real promise for psoriatic arthritis specifically. Generally speaking, I wouldn't recommend long hospital stays; they tend to combine corticosteroids with various types of phototherapy, which can be devastating for the skin. To me, hospitals are fine for getting tests done or staying a couple of days, but that's about it. Give petroleum a shot—it's available in the US, and they have great doctors and specialized staff, plus the treatment feels much more natural.
Hmm, well, when I first dealt with psoriasis, I was only 14. At that age, the doctors were really my only option—I didn't know anyone else who had this, and I was spiraling into a bit of a depression after finding out I’d be stuck with this for life. That was my first real encounter with specialists; growing up, I was healthy as a horse, so this was all new. I mean, sure, doctors aren't perfect, but if you're facing something like cancer, you're still going to turn to them first—even knowing how heavy the diagnosis is and that they *might* be able to help. You have to trust them, right?! I only use salicylic acid in my ointment on my scalp, and I've done that from the very beginning—but only because nothing else lifts those scales quite like it does. I've tried everything under the sun, but that's the only thing that actually works for me. As for corticosteroids... well, I've already mentioned that I run from them like the devil from temptation 🙂 though, unfortunately, I learned that lesson the hard way. I went to Israel specifically for my psoriasis, but it turned out to be especially helpful for my joints (if it hadn't been so expensive, I'd go back in a heartbeat). The treatment in Israel is completely natural—don't get me wrong, I'm not trying to preach, but I truly saw incredible results with my own eyes. My rheumatologist actually suggested petroleum, but my dermatologists advised against it because I deal with three different types of psoriasis (vulgaris, guttata, and pustulosa), and they weren't sure how it would affect each one. Plus, at the petroleum facilities, they combine it with phototherapy, which I absolutely cannot do because my skin is just too sensitive. I hate being in hospitals—honestly, I'd avoid it unless I absolutely had to—but when things take a turn for the worse, they're the only solution. 🙂 It's not like I'm begging them to keep me there longer, but I can't exactly run away either. The last two times I was admitted, I ended up clashing with both the nurses and the doctor, who kept insisting on applying a specific cream to one part of my body. Of course, I won that fight—nobody can force me into anything—and ever since then, I strictly demand neutral creams (like plain Vaseline or basic emollients). All in all, it's just a constant battle with this disease. 😁 Thanks for taking a moment to respond to me. 😉 😍
Chris Morgan67 said:Hi, Robin Robinson8. 🙂 I'm really glad you decided to join us.
To put it briefly—since I stopped following my doctors' orders blindly, I've seen some massive improvements. I honestly regret spending so much time slathering corticosteroids (like Belosalic) on my skin; they just don't work long-term. In fact, they can actually make things worse.
Your private doctor gave you solid advice regarding the Vaseline... though, honestly, it might be even better if you used natural oils, like calendula or St. John's Wort oil.
For me, those oils were a total lifesaver! If it weren't for them, I don't know where I'd be right now.👎
And funny enough, I actually got that advice about the oils from my GP, not a dermatologist.
Anyway, I have to tell you—your story really touched me, but it also worried me. It’s pretty clear our doctors here prescribe these nasty medications in crazy amounts.👎
Hey, I've been reading through a lot of your posts, and I think your advice has helped so many people—I'm sure there are folks out there who are incredibly grateful to you.👍 Unfortunately, I can't quite bring myself to stop listening to my doctors. I'm just too afraid of this condition getting out of hand—not just with my skin, but with my joints, too—so I feel like I have to stay in constant coordination with them. That Belosalic stuff left me with some real trauma.😲 Those two times I dealt with erythroderma were probably the worst experiences of my life, so I try to steer clear of those kinds of toxins. I'm not sure if anyone else here has gone through erythroderma or truly knows what it feels like, but I know you mentioned something about it once. As for our "esteemed" doctors... I wouldn't even bother commenting on them. They—and honestly, the entire American healthcare system—are basically zero compared to doctors elsewhere in the world. For instance, I think I'm one of the first people in the US to use these specific meds (Sandimmune Neoral) for psoriasis, even though they've been used globally for 20 years already. Usually, that drug is used for organ transplants to prevent rejection. Well, we'll manage somehow, haha. Take care!👍
Michelle Parker3 said:I don't even know which type of psoriasis I'm dealing with yet—which feels a bit tragicomic, honestly—since I’m currently stuck in this waiting game for my doctor to get back, so I can finally head in for an appointment. It's been about two or three weeks now without any flare-ups; I've just been messing around with those various creams. But, after reading your post, I kind of feel like just tossing everything in the trash and stopping all treatment altogether. I think that might actually be what I'll do. I've been applying those creams for the last year or two—well, more like the last couple of days, really—and I have this nagging feeling that I've just fried my skin. Plus, based on what you described, phototherapy probably isn't my cup of tea. I'm incredibly sensitive to the sun—like, seriously sensitive—and for the last three years, I've been getting allergic reactions all over my face if I don't slap on SPF 50+, even in the middle of winter. To be honest—I have this feeling that things have been calming down lately. I'm seeing fewer flare-ups, less nervousness, and just less overall stress... I guess I’ve started focusing more on my mental state, and now I find myself hoping it won't resurface... though, honestly, this damn hope is a double-edged sword. 🤣
What can I even say? Everyone keeps telling me, "Don't get worked up—stressing out will only make things worse." But honestly, the second I notice a flare-up on my own skin, I just lose it. I mean, I live with this every day and I’ve gotten used to it, I really have—but there's still that nagging thought that gets under my skin... the idea that I might not be able to just walk outside in a t-shirt without feeling self-conscious. It's frustrating, I guess. Based on my own experience—if I'm being honest—I probably wouldn't recommend corticosteroids. My private doctor suggested I just stick to plain old Vaseline—and honestly, I have to say, I’m pretty happy with the results. I’ve been using it for about four months now, and at the very least, my skin doesn't feel bone-dry anymore. On top of that—just a little trick I've picked up—I apply olive oil while my skin is still damp right after showering, which helps nourish and hydrate everything a bit better. Now, the Vaseline doesn't exactly do much to calm the redness, but it definitely keeps those thick scales from forming and stops the dryness.
Regarding phototherapy—before you actually dive into it, they’ll run a test to see just how sensitive your skin is. In my case, I had an immediate reaction, so they started with incredibly low doses—though they still managed to burn me, regardless. Personally, I think PUVA is quite effective since it works alongside melanin to encourage pigmentation, but you definitely still need to be careful.
Every treatment plan needs to be handled on an individual basis—honestly, just because someone claims a specific therapy worked wonders for them doesn't mean it’ll do the same for you. You don't necessarily have to take my word as gospel, though I suppose it might be helpful to read through some different perspectives and advice every now and then. And if you’ve ever dealt with this—well, in my own medical history, I’ve actually had three different types of psoriasis—so now you're left wondering how on earth you're going to treat them all.🤣 😁 Don't worry about it—best regards!
I figured I’d jump in and share my own experience dealing with this miserable disease. 🤣
I've been living with psoriasis for six years now. It started with just two little patches on my scalp—pretty itchy, too—but before I knew it, it had spread across most of my scalp and even moved onto my face. After some major stress, a fever, and an infection, things took a turn for the worse and flared up all over my body. Of course, the standard move from our doctors is to prescribe corticosteroids (like Belosalic or Beloderm...), some basic moisturizing creams, or maybe 5-10% salicylic acid in a lard base to deal with the scaling on the scalp. Early on, I actually spent a month in the hospital undergoing occlusion therapy and stuff like that; it helped a little, so they eventually let me go. A while later, things flared up again because of a throat infection and a fever, which landed me back in the hospital for three months. My private specialist suggested I have my tonsils removed—which I did—but honestly, it didn't seem to make any difference at all. Under medical supervision, I used Belosalic ointment for quite a long stretch—maybe five or six months. I tried basically every type of phototherapy out there (UVA, UVB, PUVA, PUVA Bath). In my opinion, UVB had a tiny bit of an effect, but they ended up stopping because I'm super sensitive to the sun and those rays—it basically scorched me, so they gave up on it. They also put me on Psorcutan ointment; it's expensive and it works, but you can't use it in combination with phototherapy—apparently, it's strictly forbidden because of the risk of hyperpigmentation. About two years after the psoriasis first showed up, psoriatic arthritis joined the party. At that point, I feel like I've tried everything under the sun. 😕 Medrol, Vioxx, Decortin, Indomethacin, Methotrexate, Keto... right now, I'm on Indomethacin. After that, I was prescribed Neotigason, which is usually reserved for critical cases like mine. I took it for two years under a doctor's watch, but saw zero results. Meanwhile, I was still using Belosalic (because, well, there's no other way to survive 😢). On my own accord, and following a recommendation from my private specialist 🙏, I decided to seek treatment in Israel. But after just four days there, my overall condition plummeted and I developed erythroderma. This happens when you've used corticosteroids for a long time and then stop abruptly—your body gets so used to them that once you quit, it just goes haywire and tries to purge everything at once 😁. Since the treatment in Israel is entirely natural, this unfortunately hit me hard because I had needed to taper off all my meds a few months prior. That month there was pure misery. (Though, don't lose hope—I saw so many success stories there; I was actually one of the unique cases they dealt with involving that specific condition.) Once the erythroderma passed, I was psoriasis-free for about a month 🤣. My doctor wouldn't accept that the erythroderma was caused by the corticosteroids; she insisted it was from stopping the Neotigason, which the doctor in Israel absolutely disagreed with. By the way, because of the dry climate in Israel, I didn't have any issues with my joints for five months—I didn't even take a single pill during that window.
Two years later, everything naturally comes rushing back and starts all over again. They don't have much left to offer me besides neutral creams and a little Belosalic, which led to the exact same thing happening this summer. I had erythroderma again and ended up in an infectious disease hospital. Based on my labs, they thought I had sepsis, so they treated me with sepsis medication, only to realize a month later that they were treating me for the wrong thing. 😠 Then comes the recovery phase. This summer was a zero out of ten for me (even though the ocean usually helps). After being discharged, they started me on Sandimmune oral tablets, which I'm still taking today. Since things usually improve after erythroderma, my doctor assumed it was thanks to the tablets—she was so happy she thought she'd found the solution that she spent two months lecturing me about it. Then, of course, another flare-up happened, and now I'm just waiting to start biologics. I should mention—those biologics were actually recommended to me about two and a half years ago while I was in Israel.
My private doctor even discussed treatment options for me in Munich, though I'm still weighing that decision—not sure if it's the right move yet.
On top of all those steroids, my skin has become incredibly thin—honestly, it's awful—and I've developed stretch marks that are up to 3 cm wide. 👎 It’s pretty bad; even the slightest bump or just pressing my skin against something causes these bruises and welts to pop up immediately.
Because of all these heavy-duty pills, I have to get my blood work done every two months just to keep an eye on my liver levels.
So, yeah, that's the short version. I know this all too well from my own experience. 👍 Best regards,
hollowraven78 said:Good evening. Hey there—so, that first photo shows how things looked up until this date. I’ve been dealing with this for many years, and if you read back through my previous posts, you might get a better sense of the history. I actually have photos documenting the results after every single injection, but—due to server space limits—I can't upload them all at once. The second photo shows progress after three injections. Things were moving in the right direction until my HLA B27 antigen flared up, causing the psoriasis to act up again. Because of that, they had to add Medrol—prednisone—along with an extra ointment. My case of psoriasis is pretty complicated, and I honestly thank God it’s going this well; otherwise, I don't think I'd still be here if it weren't for these injections. It suggests that for people with less severe cases, these biologics probably work even more effectively than they do for me. I'm sharing these photos specifically to show how the psoriasis resurfaced, and now I'm pushing forward with these injections. As long as Medicare keeps covering them, that's what I'll do. What happens after that? I don't know. All I can do is get my affairs in order at home so that if anything happens, I won't leave any problems behind. You just have to take life as it comes, I guess. 🙂 One thing is 100% certain: these preparations really do help, even those whose psoriasis covers their entire body. Tomorrow, I’ll put together a photo showing the progress after 40 injections and post a web link. Just hang tight—I'm going to go grab a cup of coffee.☕
I'm not sure if I understood correctly, but did they start you on Medrol because the psoriasis came back?! If that's the case, then in my opinion, that's about the worst thing they could have done. Medrol is a corticosteroid, and it's usually reserved for the absolute worst-case scenarios because it—well, it really tears everything down. By the way, I met a guy who has psoriasis affecting his internal organs, and the only reason he's still alive is because of Medrol—but it basically "ate him up" from the inside. His skin is practically non-existent; it's so thin you can see every tiny little vein underneath, and he can't even scratch himself because he'll bleed instantly. But he's content with it, though—he says he'd rather be alive.