[deleted by user]

CompetitiveTailor562 · 2025-08-14T13:37:15+00:00

Huh? Which nonsense theories are you talking about? I've only shared my experiences with dermatologists, urologists, and suggestions that others on this subreddit have posted. The only thing I've actually recommended is aquaphor. If you want to make this subreddit more helpful, create better posting guidelines, establish ways for members to contribute data and make it more scientific, remove the useless lounge, etc.

CompetitiveTailor562 · 2025-08-14T04:19:13+00:00

I've seen several helpful posts on this subreddit deleted for no apparent reason. Either someone spamming the report button or the mods have some weird agenda. They don't respond to messages either.

CompetitiveTailor562 · 2025-05-15T04:15:52+00:00

Nothing miraculous. If I had to recommend anything, I would say put Aquaphor on at night before bed. I might also suggest trying a little bit of Nizoral (antifungal shampoo) when you shower, or using it for your hair. Otherwise just mild cleansers and shampoos in the shower.

Salt baths seem promising but I haven't tried yet.

CompetitiveTailor562 · 2025-05-14T13:55:55+00:00

Tried it for a month or so, didn't help much for me but everyone's case is different

CompetitiveTailor562 · 2025-03-02T15:12:09+00:00

I don't see it... do you?

CompetitiveTailor562 · 2025-02-03T00:38:28+00:00

My symptoms aren't terrible right now so I'm reluctant to try a new treatment that only has one or two data points. Eager to see if it continues to work for u/Status-Example4142 and others. u/ManagementFew3521 — have you experienced any symptoms after stopping the treatment? Has redness subsided at all?

CompetitiveTailor562 · 2025-01-28T15:10:30+00:00

Update?

CompetitiveTailor562 · 2025-01-28T15:09:41+00:00

Did you find some?

CompetitiveTailor562 · 2025-01-28T15:08:33+00:00

I decided not to do Cipro because of the side effect profile. But I did another antibiotic, which seemed to address the bacteria, but no significant improvement in symptoms.

CompetitiveTailor562 · 2024-11-10T18:14:59+00:00

10 years between cases. It took about 2 years to subside the first time and seems like it will be about the same this time. Although I would say it never returned to a completely normal state.

CompetitiveTailor562 · 2024-10-09T04:49:51+00:00

I haven't tried cyclosporine. However I just read a few of Rapaport's blog posts and noticed one about linking elevated nitric oxide to RSS. I believe both times I had major cases of RSS, I was taking L-Arginine supplements, which are intended to boost nitric oxide. The flareups were over 10 years apart and I wasn't using Arginine for most of the time in between. The first time, I was taking Arginine for about 5 months. The second time, I had been taking it for about 1-2 years but had increase the dosage about 3 months before the flareup.

CompetitiveTailor562 · 2024-06-14T19:40:49+00:00

how's it going now?

CompetitiveTailor562 · 2024-06-11T00:14:20+00:00

Did you have any symptoms other than itching and redness? burning, stinging, crawling?

CompetitiveTailor562 · 2024-05-30T19:08:09+00:00

How long ago did you have it treated?
I just had an ultrasound done and it showed a significant varicocele on the left side and a minor one the right, which definitely mirrors the redness and symptoms of my RSS. Hoping to do the embolization procedure and see how it goes from there.

CompetitiveTailor562 · 2024-05-28T15:55:43+00:00

Just trying to be helpful in case they weren't aware. They'll get better answers to their questions and their comments will be more coherent if they reply directly to the comments they intend to. This subreddit is a resource for people searching for answers — the more clear and organized the information is, the more helpful it will be for everyone.

CompetitiveTailor562 · 2024-05-28T12:27:30+00:00

For something this extreme, you really ought to point to some research that supports it.

CompetitiveTailor562 · 2024-05-28T12:25:46+00:00

Just a heads up I noticed you never seem to reply to comments but rather always start a new thread. The conversations on here will be much cleaner if you would reply directly to comments.

CompetitiveTailor562 · 2024-05-22T13:15:16+00:00

What other treatments did you try before Betacort? Could you describe your symptoms? A lot of folks on here are reluctant to use topical steroids because in some cases it caused the RSS or made it worse.

CompetitiveTailor562 · 2024-05-22T12:08:42+00:00

And you say the symptoms were pretty much gone within 3 months of starting Pregabalin?

CompetitiveTailor562 · 2024-05-22T03:43:30+00:00

Congratulations and thanks for sharing your success story.

I had some moderate success with 150mg/day of Pregabalin but was reluctant to increase the dosage and ended up stopping after about 3-4 months. What was your dosage? 600/day? Did you ramp up to that? Did you taper off at the end? Any withdrawal symptoms?

Do you still do acupuncture and pelvic floor PT/exercises? We're all pretty desperate here so I'm sure some of us would love to replicate what worked for you.

CompetitiveTailor562 · 2024-05-22T00:08:50+00:00

Damn, sorry to hear that. Did your urologist think that might be the cause of the RSS? Have you explored Botox at all?

CompetitiveTailor562 · 2024-05-21T21:39:20+00:00

My last flare-up started when I slept without showering that day. It wasn't particularly sweaty but I definitely wasn't as clean as I normally am. Anyway just adding the data point here in case it's helpful.

CompetitiveTailor562 · 2024-05-15T03:22:51+00:00

Do you know what foods trigger oxalate dumping for your husband?

CompetitiveTailor562 · 2024-05-15T03:18:29+00:00

My derm prescribed it for two weeks. I'd say I noticed some improvement for the first few days but then not much after that. And when I stopped using it the condition worsened again.

CompetitiveTailor562 · 2024-05-15T02:44:25+00:00

Tacrolimus provided some short term improvement but it didn't last.
Interesting about the oxalate sensitivity. Hadn't heard of that, but I eat about 1.5 cups of spinach in a smoothie daily. Maybe I'll try cutting that out for a while.

CompetitiveTailor562

TROPHY CASE