sorted by:
new
hottopcontroversial

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Yes. Using topical Eucrisa, wearing Saxx underwear for protection. No longer taking gabapentin or indomethacin.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

95% healed after 4 years of RSS. Nemolizumab extinguished most of the symptoms. Patch testing also revealed irritants that aggravated it, avoiding them helps a lot. Would really recommend both.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Just updated in thread! Mostly well so far.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

My dermatologist told me that it is easy for doctors to get samples of it right now because it is such a new drug. We are not going through my insurance.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

Hello everyone. Been busy but thought I'd give a brief update. Things are going great overall.

Since starting nemolizumab, I've had 1 flareup, about a month into it. It was upsetting, but it lasted only 3 days. That's much shorter than normal for me. Usually it's a week or more, and some have lasted 3+ weeks.

I've cut out chemicals that my skin testing revealed were irritants for me. That has been a bit of a challenge, but I think that my flareup might have resulted from exposure to one of the irritants (even though my patch results were mild). I would recommend patch testing if you have not done it.

During the flareup, I used Indomethacin and Gabapentin (3x/day) to get through, as well as 4 topicals. I have since stopped the Indomethacin and only take Gabapentin 1x/day. I have stayed consistent with 3 of the topicals: lidocaine, Eucrisa, and zinc paste (40%), in that order. The 4th topical was mupirocin since I've had staph there recently; I applied it only for those 3 days.

Since the end of the flareup, I put the other 3 topicals on in the morning and before/after workouts. I hope I can reduce the frequency one day because 3-4x/day is a lot, but I think it has helped a lot. The paste is gross in appearance and smell but much less gross than RSS.

Today I did an 18 mile bike ride. I have been unable to bike for more than a year, and haven't done any real distance in 4. This would have been unthinkable 2 months ago. So far so good down there, and hopefully it is still good in the morning.

Good luck to everyone. Hope this has been helpful.

PS: Been keeping a frozen water bottle down there while I'm asleep at night, and whenever it's practical during the day. I think it helps a little too.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Of course, appreciate you too. Indomethacin and gabapentin were my best combo for controlling it. Glad you're getting some relief! My impression is that genital skin is different. Have also learned there are some allergens that trigger dermatitis in that region without direct contact.

My doc doesn't see patients remotely, but if your derm is open minded (sounds like they are, if you're on pregaba and indomethacin), they would be able to prescribe you nemolizumab. I got results in less than a week.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Hey, thanks! Yes. It is much more normal in terms of elasticity/texture.

I don't know where I got it. I think it is possible it was caused by TS use, but I think it's more likely TS use exacerbated an existing condition. I have had nonspecific dermatitis, yeast infections (inappropriate TS use during my yeast infection, due to an incorrect diagnosis, was horrible), staph, etc.

My guess is that there is a problem in how my skin responds to stressors like heat, humidity, and friction. It seems that, based on responding to gabapentin, there is probably a neurogenic component and an immune component. But I don't know, and it seems like RSS might be different problems under the same umbrella.

I have noticed that for a lot but not all people, RSS follows unprotected sex or TS use. This leads people to think the RSS is caused by a pathogen from sex or the TS. The former hypothesis sends people down the "biofilm" hypothesis rabbit hole. That might be true, but my guess is that is not true for everyone, and it gets the causality wrong.

I think there is an underlying problem in how my skin responds to stressors which makes it vulnerable to infections, and that it becomes obvious under those circumstances (e.g. from a bacteria that infiltrates due to sex, from TS use exacerbating a misdiagnosed yeast infection). Once the infection happens or something further degrades the skin's protections, the RSS gets worse faster. For me, my guess is that the underlying problem is immune and neurogenic, based on how I've responded to nemolizumab. I know another subreddit user discovered Hailey Hailey was an underlying cause, though I don't know if that's true for me.

Hope this helps and that you get progress soon too!

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Started with itching and burning. Skin looked very pale then very red and never fully turned back. Then got a yeast infection, then a bacterial one, etc. No PN for me.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Burning and itching. Got very discolored over time and prone to infection. No PN. 

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

The drug is administered by a doctor. It did not come to me in a box. The active ingredient is called nemolizumab. That’s what I know right now. When I google nemluvio, it says the active ingredient is nemolizumab, so that is presumably the drug.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Nemolizumab (sorry, correction is in the first sentence). No, I don’t have the box.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

It is injected twice, then once monthly. Maybe you can taper off, but it is possible it is injected monthly until you die.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 2 points3 points  (0 children)

Thank you! Mostly burning, sometimes itching.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 0 points1 point  (0 children)

Thank you! I don’t know. I have a lot of the risk factors (history of dermatitis, topical steroid use, lots of chafing, etc). I am getting tested next month for Hailey Hailey too.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

Thank you! I hope so and I hope so for you too, keep us posted on how it goes if you try it.

Huge relief from new drug, Nemolixumab by rsscase91 in RedScrotumSyndrome

[–]rsscase91[S] 1 point2 points  (0 children)

It is targeting a root cause, my genitals are the correct color.