7 posts shown.
Robert Clark2 said:Back in the summer of 2005, my psoriasis vulgaris decided to get real fancy and added psoriatic arthritis and erythrodermic psoriasis to the mix. What a lucky guy I was, right? lol.
That meant I had to start on Neotigason therapy immediately.
Before they’d even let me touch the Neotigason, I had to go through the whole ringer with full blood work.
Here’s a peek at what those first results looked like—since I know you guys are curious about the numbers: ASAT was 14 out of 25, ALAT was 10 out of 25, alkaline phosphatase was 172 out of 230, and Gamma GT was 12 out of 38, with a minimum value of 5.
Hey there! How did Neotigason end up working for you? Personally, I had such great experiences with it!
Robin Robinson8 said:I think this part applies to me, so I just wanted to clarify things a bit... 😁
I’ve already posted about everything I’ve tried, how many times I’ve dealt with erythroderma, and just how brutal my psoriasis and arthritis can be. Honestly, if any of the meds I tried before actually worked, I definitely wouldn't be looking at something like this—especially since I'm still not totally sure if it's doing better work than Sandimmune or Vaseline or something else entirely. But for the first time, I'm seeing improvement, so it feels like my only real option right now.
Now, I am absolutely NOT recommending that anyone uses this without talking to their Doctor first! Of course, everyone is different, and just because it helps me doesn't mean it'll work for someone else. All these drugs have side effects, and something like this can be pretty intense. I totally agree with you on that point, but if this is what's finally showing results for me, I'm going to stick with it regardless of the long-term stuff. My psoriasis went from covering 90% of my body down to just 15%, which is honestly such a huge relief!
In the States, using Sandimmune for psoriasis isn't quite as common as it has been elsewhere for decades, but it's definitely an established option, even with all those side effects people talk about.
The way it works is, if you see improvement, you gradually taper off the dose until you stop completely. That’s a massive plus for me—it's not something I have to take forever. And if there’s no visible result within the first six weeks? You stop the therapy entirely, which is also a great safety net in my book.
I'm with you—fewer drugs and fewer toxins is always better, but not when you're stuck in a situation like mine.
Thanks so much for the heads-up! I really hope your psoriasis is staying calm. Best, 😍
Hey! I completely agree with you. I think you gave everyone the perfect answer, and honestly, it's exactly how I would have phrased it based on everything we've all been through... The only reason I was digging for more details was because I'd been chatting with some folks who used Sandimmune in liquid form, so I was curious about your specific experience... BEST WISHES!👍
Robin Robinson8 said:I had my tonsils out too, and honestly, my psoriasis didn't calm down one bit. Every single time I catch even a tiny little cold, the lymph nodes in my neck swell up, and whenever my immune system takes a dip, the psoriasis flares right up and gets all puffy. I really feel like psoriasis is always lurking somewhere inside us, just waiting for a trigger—like stress or a sniffle—to blow up. 😁
I'm really hoping things settle down for you!
By the way, ever since I started using nothing but Vaseline and taking Sandimmune, it’s almost completely cleared up! There's still about 15% left on my body, but it's super minimal now. It doesn't even flake anymore, it's just slightly red. 🙏 👍 Oh man, I am so incredibly happy! 😍
Hey everyone!!
Hey there! Could you share a few more details? Are we talking about the Rinestone Sandimmune? How do you take it, and do you need a prescription? I'm asking because I've seen a couple of people for whom it actually made a huge difference. And of course, I'm so glad to hear you're doing better now...👍
Michelle Parker3 said:I made this homemade stuff... you basically boil about 2-3 cups of water and toss in a teaspoon of chamomile. Then you cover it up, let it cool down, and strain it. I take a cotton ball, soak it in the cold chamomile, "apply" it first, and then just dab at the worst spots and let it air dry. I’ve been doing this right before bed, and honestly, it actually dried out my psoriasis! I'm not sure if it'll stay away long-term though... I'll keep you guys posted!
Hey everyone! So, a buddy of mine from an abbey in Ostrog gave me this lotion called Stefalaz yesterday. I'm thinking about giving it a shot and seeing if it works for me. Has anyone here ever used it? Let me know what you think!
Robin Robinson8 said:Hehe, thanks!!
Well, I'm still pretty young (turning 20 soon!), so I've got plenty of years before I even need to think about pregnancy 😁
By the way, I used Neotigason for two whole years and honestly? Nothing. Zero effect. Once I finally quit, I actually felt better because all those annoying side effects finally cleared up.
I totally agree that sometimes we know way more than the experts, since none of them actually live with psoriasis—they just study it from a distance.
Best, 😍
I'm so sorry it didn't work for you! It really feels like we just have to keep searching and swapping stories to find what works...
Hey there, fellow psoriasis warriors! I finally decided to jump into the conversation and share what’s been going on with my own struggle. I've been dealing with this for 25 years now, and if there's one thing I've learned, it's that this stuff is incredibly individual. What works for one person might do nothing for another—it's all about finding that specific medication or cream that helps you actually feel human again or keeps things under control. For me? It’s Neotigason. Honestly, just that and nothing else. I use it for about 18 months at a time, then I take a break to let my system reset. My body seems to have adjusted to it pretty well, too; even on a daily 50 mg dose, my triglycerides and cholesterol levels don't really spike. I’ve been using it on and off for five years now and I'm super happy with the results. In fact, during an 8-month stretch, my skin was totally clear, which feels like a massive win! Dealing with topical creams is such a massive headache, so having these capsules has been a total lifesaver. The only little nuisance is how dry my skin gets after a shower, so I just use some neutral Pavlovic ointment to smooth things over. Anyway, that's just my experience... hope everyone is doing okay!👍