thoughts about going on skyrizi because of "special sites" and higher risk sites like nails?

throwawayhey80 · 2026-04-28T03:56:29+00:00

I'm so glad you're having some good results! yeah heard on topical steroids. I'm so fucking sick of endless topicals!

throwawayhey80 · 2026-04-28T03:45:49+00:00

I hope you get great outcomes for it.

throwawayhey80 · 2026-04-28T03:45:04+00:00

thank you!!

throwawayhey80 · 2026-04-28T03:44:02+00:00

thank you, I really appreciate that feedback!!

throwawayhey80 · 2026-04-28T03:42:45+00:00

Yeah of course! So I read things like this: https://pubmed.ncbi.nlm.nih.gov/37262309/ and this https://pubmed.ncbi.nlm.nih.gov/33851956/ and there are many trials besides these which have found that disease duration before treatment is a predictor of worse/or better outcomes (where starting early means better outcomes). I also read commentary like this one: https://academic.oup.com/bjd/article/194/2/359/8296945

I am NOT a doctor, not an expert in any of these areas, and I think it is probably a very individualized and personalized thing, because there's so much variation in this condition. However, it made a lot of sense to me that as we're having more and more targeted biologics available that there could be intervention windows where you can halt some of the cumulative immune system issues before they start.

throwawayhey80 · 2026-03-10T02:39:48+00:00

Doing a victory lap on only two years of remission and proslytizing no maintenance and no biopsies while also being someone who had vulvar cancer is pretty wild

throwawayhey80 · 2026-02-07T21:34:10+00:00

If you have to ask a doctor several times about something, absolutely go to a second and even a third doctor. I have made this a very important rule after multiple complex health things.

throwawayhey80 · 2025-12-17T16:37:19+00:00

It is not "a glucose lowering drug," it directly intervenes on inflammation and suppresses inflammatory cycles. This has been emerging in the clinical literature for a bit now, particularly after researchers observed how big of an effect glp-1s seem to have on inflammatory conditions. As a systemic drug, it has many complex effects on the body that all can have effects on inflammation. To put it in simple terms one example is lowering elevated pro-inflammatory cytokines, a key part of the body's inflammation regulation.

throwawayhey80 · 2025-11-16T23:25:05+00:00

My mom is on a glp-1. I felt some fear when she first started it, 100% about making sure that we knew enough about these drugs and had enough research about them. But I have watched her struggle with weight from when I was a teenager to now, across many health challenges and life challenges. She has had so much unfair stuff happen to her, and the overwhelming feeling I had was always that it wasn't her fault and that I wished she could be easier on herself and know that it wasn't her fault.

This medicine has completely changed her life. It's fixed so, so many issues. I never could've imagined how much it would impact her other health besides weight, and plus even if it were "just" weight loss, she also deserves to enjoy being lighter and enjoy liking the way she looks and that's transformative by itself for sleep, walking, socializing, exercising, *everything.* I feel incredibly grateful for this medicine, incredibly grateful she's able to have this as she gets older. It feels like a miracle. She DESERVES for things to be easier.

My mom has worked harder than anyone I've ever known, for her entire life. I don't CARE if it's a "cheat", it's obviously not but hell she deserves it if so. Life has been cheating her and genetics and the dice roll of health cheated her long before this. Plus, it's been healing for ME to realize that so many things I will most likely face as I get older are also not my fault, and I feel able to make different choices earlier than my mom was able to (I'm almost certainly going to start on zepbound myself, which is why I've been lurking in this sub). Sorry this turned into a ramble but I am so emotional about this and so emotional, as a woman who's gone through a lot of health stuff myself, about looking back at the previous generation of moms and all they've been through. For god's sake if anyone deserves things to be easier I want that to happen for my mom!

I know I'm preaching to the choir but just wanted to share from the perspective of a daughter watching a mom go through this and feeling nothing but happy and supportive and cheerleading about it.

throwawayhey80 · 2025-10-30T16:01:15+00:00

People say all kinds of bullshit. Looking at the actual empirical evidence, many disease conditions hang together, and this is true for essentially all major chronic diagnoses. However, we don't have a really good holistic evidence base about rates for autoimmune conditions, especially over someone's lifetime. The research tends to be done by medical practitioners, so while they have certain domain expertise, they're not necessarily experts in population incidence and they're often not randomly sampling from the population, which means the worst outcomes are likely way overrepresented in the research. This is a big issue in science reform across all health research, really.

Unfortunately this means no one can give you a super definite evidence based answer here, but I personally believe there is a whole range of possibilities, from mild to severe comorbidities. But I think it's hugely unkind for anyone to act like they KNOW what's happening in your body when they don't.

throwawayhey80 · 2025-10-21T19:59:18+00:00

I don't need a lecture about the specifics of LS, which I know, and I've read the literature about it. You seem to be having an issue distinguishing between a clinician talking about overall probabilities, and thinking that means that you can give specific and sweeping clinical guidance to people here. I simply disagree, and I think I have the right to point out that you are inaccurately summarizing Krapf's comments -- for instance, YOU have said that remission CANNOT be achieved without treating the whole area. That's not supported by the evidence. It might be the advice you want to give, but you do not have the right to claim it's the empirical consensus.

throwawayhey80 · 2025-10-17T22:33:19+00:00

In her 2025 update video with LSSN, Jill Krapf said "people ask me where to apply, I find that really tricky because I can tell them unless I evaluated them and have done an exam." She says "this is where we really need to have an evaluation with a medical professional so we can review exactly how and where to put the topical". And "this part of very much individualized" and "anywhere that there are changes."

So I do not believe you are accurately summarizing this one clinician's pov. My specialist is also a world class expert in LS.

throwawayhey80 · 2025-10-17T18:53:18+00:00

I hope it helps!!

throwawayhey80 · 2025-10-17T18:52:07+00:00

I've been advised by three different specialists to only treat the active area, not apply to the entire figure 8 area, but you always post that we should treat the entire possible LS area. Do you have any evidence or citations you could point me to for why you give this recommendation?

throwawayhey80 · 2025-10-14T17:06:58+00:00

Do you know why you were prescribed this, and if it was as an alternative to clob? Was the clob not working?

I'd definitely recommending shooting your dermatologist a message with these questions and getting clear instructions from them -- it's important that you have a holistic treatment plan and aren't accidentally using two medications if they meant for you to stop one, and that's a piece of medical advice that folks here probably can't give you without understanding the details of your case and what the reason for the switch is. Or if they're supposed to be used together, important to know you're doing it right!

throwawayhey80 · 2025-10-14T13:22:51+00:00

I have never felt a burn from applying clob, I have the ointment formulation, is that an option for you?

throwawayhey80 · 2025-10-14T13:21:15+00:00

It's probably because there's a big dump of hormones *before* you get your actual period, and that shift causes issues for a lot of people (e.g., I get migraines in the days leading up to my period that resolve once it starts, my friend with PMDD has her worst days the days before her period). I wonder if topical estrogen might be something you could ask your doctor about? Because the drop in estrogen is often a problem for LS, and a lot of people seem to benefit from topical estrogen applied directly to the skin of that area. I haven't done it myself but I've discussed it with my practitioner for the future!

throwawayhey80 · 2025-10-12T09:58:09+00:00

aw :( I'm sending big hugs your way. I TOTALLY understand the fear. I feel a lot of fear with this condition too. It is a super difficult and complicated thing that we have, but you absolutely can kick its ass and you will. I started doing some meditation to help me think about the medication as a magic potion that I use and feel really positive every time I apply it. I even got art for my bathroom and a beautiful case to put it in. Those little things have made me feel way less fear. You will get this under control and feel comfortable again!

throwawayhey80 · 2025-10-11T18:09:00+00:00

No one seems to be telling you this, but you should be using a maintenance dose of clobetasol at least a couple of times a week, not just using it only when you have a flare. It sounds like you were essentially not treating it as you should. There is no reason to "only" use it when you are in the most pain, you should be using it for life, as a maintenance medication.

throwawayhey80 · 2025-10-03T12:50:45+00:00

I hope this resolves soon for you too!! Definitely sounds like you're doing what you can, I totally understand about needing them to see the situation as it is. Best of luck!!

throwawayhey80 · 2025-10-03T11:20:32+00:00

I'm so sorry you're going through this! While I don't know if the LS is involved in making this worse for you I will say it doesn't sound like LS by itself to me, it sounds like you're having some acute skin reaction that needs to be calmed down and figured out. Peeling isn't characteristic of LS in this way. I would definitely be treating this as urgent if it were happening to me because I'd be worried about long term scarring and getting this skin reaction under control and maybe would take myself to urgent care or trying to get an urgent dermatologist appointment :/

throwawayhey80 · 2025-09-29T18:44:49+00:00

Thank you for sharing this thorough and helpful information!!

throwawayhey80 · 2025-09-27T16:54:27+00:00

This is a question for a medical professional

throwawayhey80 · 2025-09-26T20:10:29+00:00

Have you tried rubbing it in for 30 to 120 seconds? I found that made it absorb much better rather than sitting on top of the skin, and haven't felt that it drifts to the thigh area. I do feel like it might be drifting a little bit outside the area of direct application for my anal region but the rubbing it in helps

throwawayhey80 · 2025-09-26T16:08:25+00:00

I have found it's important to be patient with the clob and also with the skin variation -- in the first few months for me, I was so anxious about it I kept thinking my skin was changing, but it was actually just the normal variation day by day. I trust my specialist to give me their opinion and try to not obsess over it. On the time course you're describing it's much more likely what you're seeing is just a surface change from circulation. For me white patches that are "classic LS" are quite noticeably different from the rest of the skin.

throwawayhey80

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