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Grover's Disease: What works to help find relief?

Skin Health | Last Active: Nov 4 2:57pm | Replies (2012)

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@ccamargo82

I am a 39 year-old male and was diagnosed with Grover’s Disease last Summer. I originally thought it was folliculitis from shaving that simply wasn’t going away, but ceasing the shaving didn’t really really help, so I became concerned. It originally started on my stomach, but then spread to my chest and more recently the area around my clavicles. None of the spots heel. I don’t think any of them have healed, honestly. Once they show up, they stay. The very first spot I found probably 1.5 years ago is still there.

First line of treatment was Clobetesol cream, which I applied morning and night for months. The doctor also told me to use antibacterial soap and alternate with some type of antiseptic cleaner when I shower. All of this absolutely nothing, which baffled the dermatologist. It might have reduced itching, but it didn’t really help the spots. I complained after a few months that it wasn’t working, but the doc said that the cream was the “strongest stuff they have” and encouraged me to keep taking it. I eventually requested a different dermatologist, who suggested I only apply the Clobetsol in the morning and apply a different cream (Calcipotriene) at night. This also didn’t help, other than reducing the itchiness. I know that I have to take at least one of those creams at all times, because when I temporarily stopped for two days out of curiosity, the Grover’s flared up massively and the itching became unbearable.

Anyway, a few months ago, the doctor suggested that I try Acitretin (the acne med), which I did for a few weeks with a required “before and after” blood test to make sure it wasn’t doing anything bad. I didn’t feel like it was doing anything other than making my lips dry, so I stopped. I felt like I was throwing way too many things at the Grover’s and nothing was helping.

I switched dermatologists. The new doc told me to immediately stop the Clobetesol (which I had been taking for over a year at this point with no improvement). She claims the antihistamine medicine (Clarinex) may help, which I am now taking, while continuing to apply the Calcipotriene, both morning and night. I still have not noticed any change whatsoever.

Honestly, you can go absolutely insane trying to come up with theories of what’s causing it and changing different things in hopes that you’ll find the cause. Anyway, while doing some research, I noticed that one doctor website suggested something I’ve never heard before:

Cutting out soap completely while showering.

Now, obviously you’d still use soap on your genitalia, but when I think about it, the area that I’ve always targeted the most with soap has always been my stomach and chest. Even long before Grover’s was diagnosed. It’s just how I bathe. But now, I’m curious if experimenting with avoiding soap on the affected area might help. The theory, of course, is that the soap is stripping all of the natural oils from the area, so I should just use water and then apply moisturizer after showering to help “lock” in the moisture. Has anyone had success at doing this? It’s just strange because my stomach and chest have never felt “dry” by any means, but my natural instinct is to attack it in the shower like I’m targeting an acne flare up, when in fact, it’s completely different than acne. I honestly don’t know.

All I know is that this has been a very depressing experience. I can’t wear polos, button-down shirts, or pretty much anything other than crew neck shirts because of how embarrassing it is. I hate going to our community pool because it looks like I have some type of contagious condition like the chicken pox.

I’ve heard all of the theories about heat. I live in Phoenix, which can become insanely hot. However, the fact that it was just as bad when it’s cold as when it’s hot has proven that heat itself isn’t really the root cause of what’s going on here.

Do you guys have any thoughts on the “no soap” approach?

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Replies to "I am a 39 year-old male and was diagnosed with Grover’s Disease last Summer. I originally..."

Have you tried Cilantro smoothies. They work !

You will read a lot about Cilantro on here , Like you, I had no luck with prescribed medications so I tried the Cilantro in my Smoothie every day. It took Three to Four weeks then my Grover's improved by 95% + and no itching . Heat and Sweat are the enemy (Mine was the steam room at the Gym), once you have Grover's it breaks out in the cool weather also. When you go out in the Phoenix heat cover your Grover's area with Zinc Oxide( Diaper cream) it will protect you from sweat. Use half a bunch of Cilantro @ a time. Good luck .

None of those dermatological solutions work for making your Grover's spots go away...strong steroids, weak steroids, or whatever. They may help with the itching, but that's it. Grover's has a mind of its own and for some people it just magically goes away after awhile, but for others like me, it stays around probably for life. I've had it for maybe 15-20 years. Heat and sweating are your worst enemies, and no direct sun on the Grover's area of your body! I would recommend a soap like Dove For Sensitive Skin, hypo-allergenic and fragrance free. The chlorine in your water probably isn't helping either, so maybe get a shower filter. Some people on here swear by the Sarna lotion to help with the itching. I got some recently and it does help a little. I also use aloe vera gel for itching and it helps too. Apparently the cilantro smoothies have resulted in total remission for some people on here, but for others it didn't work or caused remission for awhile only to have a recurrence later. @gardenjunkie knows all about this stuff! She is very helpful. I am experimenting with concentrated and organic cilantro drops from iHerb right now instead of going to the trouble of doing the necessary shopping and daily prep work of making smoothies. It has only been a week or so, but the spots are noticeably less inflamed so far, but it could just be a coincidence. There is no scientific way to prove any of these things work, but the drops may be helping. However, if you don't mind going to the extra trouble, there is far more evidence on this forum that the cilantro smoothies are the way to go. Best of luck to you!

Sometimes doctors are simply grasping because in truth they know nothing that can help with GD. I wrote up our successes with cilantro and gave it to 2 derms. One was completely uninterested and the other said he would pass it along to other GD patients. I have a friend who goes to the derm who said he would pass it along and he never suggested it to her. If they don't read about it in a medical journal it's simply hearsay to them. Both doctors could see my results but probably figured I was in a dormant period.
You have a common reaction to like most of us with GD. I could even feel my collagen impared skin on my upper back start to raise up bumps when I got hot. It's like our skin is just waiting to explode and on the already errupted areas sweat would cause stinging. I was prescribed ever product mentioned in our blog: Clobetasol, Calcipotriene, steroid shots, steroid topicals, px anti-bacterial washes and had all sorts of OTC anti-itch creams or lotions like Sarna recommended and nothing helped. I do correct that, one derm told me to try Flanax (capsacian- hot chili extract) which I would apply at bedtime, avoiding facial contact to help with itching. After my shower I would use a disposable vinyl glove to apply and remove from the bottle with a Q-tip. If you inadvertently touch your eyes it would burn them. It would burn fiercely on the rash areas for 30 sec, surprisingly the burn was a relief from the itching and pain and then the burn would leave I would get about 30 minutes of itch/pain reduction which gave me time to settle in bed and fall asleep. I think it confused our nerves. I trained myself to sleep only on my side and never move in my sleep. My sides were always clear (no sun exposure?). Moving around in bed would set off the itching and pain to higher levels.
I've never read that not washing with soap helps GD. However what soap you use is important for many reasons. I have 2 other forms of eczema, besides GD. Many of my ACD issues were related to ingredients in most soaps and detergents. All 3 of my forms are in remission right now.
Never assume you only have GD. You could also have Allergic Contact Dermatitis, ACD. Many with eczema have multiple types. I've learned a lot about what we commonly put on our bodies not knowing how toxic the ingredients are and how over time our bodies loose their ability to tolerate them and thus raise up our histamine armies in the attempt to rid ourselves of what they believe is poison. Just like GD is tied to heavy metal poisoning or overloading. That is why the cilantro is helping some of this. Do a GD and heavy metal search. Heavy metals are being tied to Parkinson's and also Alzheimer's. With eczema histamines raise our inflammation levels. Just because a bar soap says it is safe or for sensitive skin means nothing- read all the the ingredients, active and inactive.
You should wash with soap like our ancestors did hundreds of years ago before we started contaminating our grooming products to lather more and smell better. Get a soap made from natural ingredients which are moisturizing. The fewer the ingredients the better. Many use Dove for sensitive skin, I used that for years and was allergic to it! Get a pure soap made the old fashioned way. I can buy a locally made soap which is simply lard and glycerin and is inexpensive. A commercially available one sold on Amazon and a Mayo Skin Safe approved product is Grandma's, a bar soap which is made from lard and lye. The soap building process turns the lye into glycerin. Both lard and glycerin are moisturizing. Until I found shampoos safe for me I even used Grandma's to wash my hair. It does leave the hair heavy feeling, but at least it was clean and it stopped the itching. Also Kiss My Face unscented olive oil soap is wonderful, simply olive oil and salt. It lathers better then Grandma's. It may be unscented but it does have an olive oil scent which when first removed from the wrapper is strong, but fades in time so I leave it unwrapped for a a week or more before use. It is extremely good at both cleaning and moisturizing. Today some liquid hand and body soaps are free of the preservatives that trigger my eczema, that said, most contain preservatives so based on my past experiences I avoid them.
I'm glad to see new members following this blog. We are real people, many of us blogging on this site seeking answers since our doctors weren't any help then we learned about cilantro from Kimass1 so we followed each others progress in experimenting with cilantro. I only do this now to encourage other's to try it, the results for me were amazing. Hope is all we have at times.