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

Thanks for the mention of the Betamaethasone cream prescribed by your dermatologist. I have been using Triamcinolone Acetonide cream, 0.1% off and on for years and it has been only slightly and inconsistently helpful. It looks like the Beta stuff is a stronger steroid cream and I will try to get a doc to prescribe some for me to experiment with. Being a stronger steroid, have you noticed any of the side effects mentioned in the info sheet that comes with it?
Also, I noticed your comment about taking Benadryl (diphenhydramine HCL) every night for sleep. If you are not taking the generic version, it is cheaper and the same thing, but you probably already know that. At Costco, I found something that helps me sleep far better than that substance. It is called Kirkland Sleep Aid and is also an antihistamine. The chemical name of the antihistamine is Doxylamine Succinate @ 25 mg. Also, it is very reasonably priced, but I don't recall the amount. There is a slight indentation on one side of the tablets to guide you in cutting them into two pieces, which is what I do, and 1/2 tablet lasts me all night long for about 8 hours. You might feel groggy in the morning when you wake up, but at least you slept!
Finally, I never had Grover's wander to parts of my body other than the front and back of my upper torso until just recently. Now it has been popping up on my arms, legs, hands and feet. It's a good thing I am retired and live alone in my own home because putting clothes on over all those sores can drive me CRAZY! HAHAHA

For sleep I take a very mild anti depressive called Trazedone. It's 50 mg. but I generally just take half. It is a godsend for me.

A few years ago my healthcare plan tried to convince me to take an antidepressant drug rather than Zolpidem (generic Ambien) for my chronic insomnia which I've had for ages. They refused to pay for the Zolpidem any longer, so now I just buy it myself using GoodRx discounts. Please tell me more about your experience of using Trazedone for sleep. Thanks.

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?

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?

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?

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!