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I have been diagnosed with Grover's disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?
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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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!
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.
Let me know if you find a marijuana blend that helps.
Oh, I could talk marijuana strains with you for days. I'm on a tolerance break right now (and a bit grouchy because of it) because I was hitting it way too hard during the last few months and the affects weren't as satisfying as they once were.
Indica strains typically give me a lovely feeling of deep relaxation. GG4 is one of my favorites. I buy these Dutchie pre-rolls here in Arizona. No matter how bad of a day I might have had, I love being able to look forward to having some weed and temporarily "escaping" all of my problems before going to bed.
I alternate between smoking and edibles and immediately make a beeline for the bed when finished. I don't go straight to sleep like I would taking a sleeping pill. In fact, I lie there for a good hour and go deep into my mind before eventually drifting off to sleep. I'm not complaining. Of course, it's not going to do anything for my Grover's, but it at least helps me no longer care that I have it – unlike my feelings during the day 🙂
I'll keep this one short. I tried the zinc oxide too which some people said helped with the itching. Didn't help me at all with itching and made my skin feel slimy. I reiterate no direct sun & try not to sweat. I live in the desert too. I feel your pain!
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?
The only cure for me was daily cilentro smoothies Big handful fresh cilentro pineapple juice banana or any other fruit yoghurt or whatever you fancy
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.
Also, the Zinc Oxide is to protect against sweating I not sure it helps with itching.
I agree.. I've tried several different creams, including the ones mentioned here (one was over $80) with zero improvement. All I use now, which seems to help, is the cilantro smoothies and on occasion when it does flare up, I apply zinc oxide (diaper cream). My grovers, thankfully, has been much better with this regimen. Good luck!
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.
I read a post or two saying it helped with their itching, and since it is used for diaper rash on babies, it would seem to make sense that it might help with itching. However, in my case, no such luck! Thanks!
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.
With eczema, which GD is a form of, nothing is precise. You may wonder if you are going into remission with GD on your own or is it the cilantro helping to put me into remission? If you are getting better with your cilantro drops stay with it, yet put research into others advice about dosage, most of us spend hours researching in our attempt to educate ourselves and find solutions. It's part of the eczema life. I don't know anything about the dosage of the drops. I tried the capsules trying to avoid the smoothies and they didn't help at all. If in time you don't improve and realize the drops don't help then try fresh or frozen.
Doctors can help with some forms of eczema. In fact they have saved my life twice and I am very grateful. If it wasn't for advanced testing like the 5 Day Extended Patch Test diagnosing me with Allergic Contact Dermatitis, ACD I am not sure I wouldn't have committed suicide because I was in such misery. This test identified my allergens, I now know what to avoid for the rest of my life. I could never have guessed what I was allergic to because many contacts have delayed reactions.
Yet you're right about the Witch Doctor theory because like us, they are experimenting with treatments hoping to stumble of a solution. GD is something that has not been figured out. I also believe because eczema doesn't kill us like cancers or heart disease the money is not put into research for eczema like it is for the deadly diseases. For those with Atopic Eczema there is a new breakthrough treatment Dupixent which is making the pharmaceutical company a ton of money. Face the fact, there is no big money in GD for doctors or drug companies yet.
I can't use fabric softeners liquid or sheet because of allergens in them, but I do have soft water which helps and I don't miss softeners at all. Based upon my test results I have many good or good enough cleaning products. Laundry- Liquid- All Free and Clear Stainlifters free of perfumes and dyes does a good job sold at most grocery stores. Dish Soap- Best I have found and I have tried many is Ecover Zero which is good and safe for me as it is free of preservatives and other elements which gave me hand eczema. I buy a case a year on Amazon. I need no protection with this product. My hands are soft and eczema free. You can't get the degreasing strength of Dawn dish soap with any of the "safe for me alternatives", so I wear my vinyl gloves when using Dawn to clean roasting pans and such. I've finally found face makeup for skin and eyes and lips which I can wear daily (still can't find eyeshadow and have given up searching for that). Even with my list of allergens to guide me on what ingredients to avoid about half of what I tried didn't. Finding make-up was an expensive process and the products that I use for make up , except for one, are all from internet based companies and more expensive then what's at the drug store. Plus most are just good enough, but an itch free and rash free face are a blessing. Even with testing it is trial and error. The EWG on the internet is very good for listing and rating the ingredients in products. You can enter Dawn or Cascade and it identifies active and inactive ingredients and rates them. I won't wear any clothing or use any cleaning or grooming products without a complete list of active and inactive ingredients. If it isn't provided I won't use it.
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