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

Let me know if you find a marijuana blend that helps.

I appreciate all of the advice. It’s just strange that when you research the disease, everyone says it goes away after a certain period of time, but might come back. Then I read these stories of people that have been struggling with it for many, many years, which has me very worried.

Living in Phoenix, especially during the summer, avoiding the heat is next to impossible. If you go outside for more than a few minutes, you’re going to sweat - even if it’s 10pm at night. I go running outside when it’s dark for a few miles, but stopped for several months because I was one of those rare people that actually lost weight during the lockdown instead of gained weight. Therefore, I took an extended break which I have recently started to resume. However, changes in my exercise habits, as well as the weather, don’t really seem to make things any better or worse. I have a soft water filtration unit, but I know that's not the culprit, because it's been unhooked for the last few months (long story). Hard water or soft water doesn't really result in a change.

The only time I had a horrible flare up that became unbearable was when I skipped putting on my prescription creams for a couple of days out of curiosity. Even though I’m going to experiment with putting cilantro in my smoothie and applying zinc oxide to the area, I’m still going to apply the calcipotriene. At least for right now. I’m afraid if I stop that, I’ll have another flare up and from what I’ve read, it’s less harmful to take that continuously in comparison to the steroid creams, that I was warned by my current dermatologist would eventually destroy my skin. When I say "flare up," I'm mainly referring to the addition of new spots in addition to the old ones that never fully go away. What's strange is that when I went to the doctor originally, I never experienced itching at all. My concerns were primarily just cosmetic at that point.

What’s interesting is that I’ve always had a reputation for taking incredibly good care of my skin. Between my moisturizer, sunscreen, cleaning, and nightly application of RetinA (0.05%), my face has always looked excellent. I sometimes wonder if I’d have any benefit with applying RetinA to the affected areas as well, but couldn’t find much research about it and don’t want to risk it.

When I was at the dermatologist a few weeks ago, they also gave me a shot of some kind of steroid in my bottom, but I’m pretty sure that was a waste as well.

I’ve gotten so many suggestions from so many different people. Everything from changing my detergent, using different sheets, both avoiding sun (which I already do), as well as giving the affected area some sunlight. The treatment suggestions alone are enough to completely stress you out because many of them contradict each other.

As for now, I’ll just stick to the smoothies, avoiding soaping the area while keeping my shower temperature lukewarm, as well as trying out the zinc oxide in addition to the calcipotriene. I'm done with pills though, that much is for certain.

I will try your method of diaper cream and cilantro in my smoothies and see if I have any success.

It heat is a true cause, then I am sure me being a stomach sleeper doesn’t help my cause - but I have tried to change that for many years and have found it next to impossible. I just flip over in my sleep (if I can fall asleep at all).

Anyway, I’ll try it for several weeks and report back. Should I discontinue my current rx cream and just rely on the zinc oxide?

I will try your method of diaper cream and cilantro in my smoothies and see if I have any success.

It heat is a true cause, then I am sure me being a stomach sleeper doesn’t help my cause - but I have tried to change that for many years and have found it next to impossible. I just flip over in my sleep (if I can fall asleep at all).

Anyway, I’ll try it for several weeks and report back. Should I discontinue my current rx cream and just rely on the zinc oxide?

You might try putting on the cream , gently message in, wait a bit ,then cover with the Zinc Oxide if you think you will be sweating. Cool showers and PAT dry on the affected area (No rubbing) Store your Cilantro in a container of fresh water covered with a plastic bag( Cut some holes in the bag) keep in the Refrigerator . Add some berries , protean powder and juice (Or whatever) to your Smoothie (EVERY DAY, half a bunch) and you won't even Taste the Cilantro. Google Cilantro for more health benefits (If you're Diabetic and on medication. check with your Doctor. Cilantro can lower blood sugar) I've taken the time to do this because people on here did it for me and I'm SO grateful. I hope it works as well for you as it did for me. Give it a month and please let me know.

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?

Also, the Zinc Oxide is to protect against sweating I not sure it helps with itching.

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.

More excellent info from @gardeningjunkie...thanks! I'll look for soap alternatives to the Dove for Sensitive Skin. How about laundry detergents and dryer sheets? I've heard they can be very problematic as well.
I have personally found that dermatologists are not much better than witch doctors. If any of you have ever watched the medical TV drama "House" in the past, these docs are working very mysterious cases where the patient can't be diagnosed, so they throw every possible solution at the patient just hoping that they get lucky, guessed right and the patient starts to recover. This seems to me to be the way dermatologists work too, at least where Grover's is concerned.
I'm still experimenting with the organic and concentrated cilantro drops from iHerb. It's only been about 2 weeks and I have gradually worked my way up to 5 drops twice per day, since taking the number of drops recommended on the label of the bottle has resulted in people posting reviews on Amazon saying that so many drops caused a severe reaction, too much detox all at once, I assume. My GD sores are gradually fading in color and are less itchy so far, but I can't be sure it has anything to do with the drops. I'll just keep going with the current routine and see what happens.