Fred Brack   Raleigh, NC

Recommendations for Treating Grover's Disease
by Fred Brack
Updated

In mid-December 2021, I developed a couple of itchy spots around my armpit.  As the itching spread significantly, it took three months to get the proper diagnosis:  Grover's disease.  I am writing up my personal experience dealing with this problem to help anyone else who may happen to find this page.  Disclaimer:  I am not a medical authority, and this page is a consolidation of opinions of others and personal experience with the disease.

Definition

Grover's disease (Transient Acantholytic* Dermatosis):

• has unknown origins;
• affects roughly 0.1% of the population (mostly white and 2-1/2 times as many men as women) at an average onset age of 61;
• hits primarily older white males (that's me);
• is often influenced by having had high sun exposure at some point, but can also be influenced by a history of malignancy, chemotherapy, or being bedridden;
• in most cases is characterized by extreme itching, primarily on the torso and back.

While medical science says it typically lasts 6-12 months, it may last for years, and it may go into remission and come back later, making the word "Transient" an insulting joke for many people.  Unfortunately, as one doctor wrote, "Treatment often seems unsatisfactory."  Yep. 

(* "Acantholytic" means loss of intercellular connections between epidermal cells due to the breakdown of intercellular bridges such as desmosomes.  Diagnosis of Grover's must be done via skin biopsy which will look for intraepidermal acantholysis [a loss of adhesion between keratinocytes within the epidermis] without negative immunofluorescence staining -- the hallmark finding for a diagnosis of Grover's disease.  Reference for this and some other facts above.)

My Experience

[Feel free to skip this and jump to recommendations if you wish, but note that I am currently in remission...]

First, I must say that I have never had any allergies, food or otherwise.  About 10 days after the itching began around my armpit mid-December 2021, I ate some cooked shiitake mushrooms (which I had done before).  The next day, a rash consisting of red stripe marks appeared on my side below the already itchy area.  My dermatologist diagnosed this as Shiitake Flagellate Dermatitis.  Weird, but OK.  She prescribed a steroid cream and said it should go away in two weeks.  I found this highly unusual, since I had eaten cooked shiitakes before.  Research said less than 2% of people are affected, and typically with uncooked mushrooms.  (In my case, I believe that technically this is called a food sensitivity, rather than an allergy.  If you want to explore this theme further, read 9 Foods to Avoid With Eczema, although technically Grover's Disease is not Eczema.)

The rash slowly went away, but itching began around the other armpit.  Around the same time I was scheduled for an annual skin exam, and surprisingly four basal cell carcinoma spots were found and confirmed by a lab.  I had three appointments to remove them surgically.  During the exam, a skin sample of my now-expanded rash was taken, and the lab result was "medication allergy."  I didn't believe it (I only take one prescription medication) and was later proven right.  However, during the process of excisions, it was clear I had a never-before "allergic" reaction to adhesive tape (photo right)!  At this point, I was convinced I had some underlying "disease" which was weakening my ability to fight histamines (?), which was reflected in the two "allergic" reactions.  [As it turns out, I don't think my problem is related to histamines because antihistamines have no effect on me.  I'm going to make a wild GUESS here:  If you have a history of allergy problems, antihistamines may help; but if, like me, you never had allergies, they may not help at all.  At least give them a try.]

To make a long story short (perhaps...), I visited my dermatologist again and had a second skin sample taken which came back "consistent with Grover's disease."  I felt somewhat "vindicated" because I never felt this was all the result of allergies!  By this time, the relatively small amount of red spots had grown to 100 or more all over my back and chest, and the itching was extreme.  As I start to write this, a month or two later, the red spots and rash from the waist to neck have receded somewhat, but the itching, particularly at night, remains a terrible problem for me.  And BTW, I had another bad response to cremini mushrooms this time; and even switching to generic paper tape (from adhesive tape) has left red, rashy looking petechiae where the tape was (though I will say that switching to Nexcare Gentle Paper Tape solved the problem, though the new 1" dispenser is controversial -- look for an old 3/4" dispenser if possible, and don't buy a generic version of this tape). 

In 2Q22, the backs of my thighs became very bumpy and itchy, and I got mosquito-like bumps on my inner forearms.  This passed.  At night, my head, neck, and back felt very hot in bed, though the skin is not hot.  [NOTE: This particular problem has never gone away as of 1Q24, despite trying 4 meds in 2023 prescribed by a neurologist. My dermatologist has no explanation either.  I had to put gel packs in my pillow at night for a very long time, though I "tolerate" the problem now without them.] 

In August 2022, I had had positive results from two things:  phototherapy and Elidel cream (Pimecrolimus).  As of September 2022, my chest and back were mostly clear (I believe from phototherapy), and the Pimecrolimus had pretty much finally cleared up my neck.  I guess you can say I'm in "remission," thank goodness, but we'll see what the future brings. (I'm educated enough not to say that I'm over Grovers: it is in remission...)

December 2022 Update:  I switched phototherapy providers in early August, and my condition (pretty good at the time) slowly but steadily deteriorated (meaning more itching).  However, the red spots did not return.  A new biopsy in December did not indicate Grover's, so I was a bit mystified.  However, I stopped phototherapy, and the itching became much reduced.  I'm under the impression that the initial phototherapy got rid of the red lesions, but I still have some form of atopic dermatitis, which I never had before.  The saga continued, though, as I still itched a lot (even down my legs), though without the red bumps, but not anywhere near as badly as the spring of 2022.

August 2023 Update:  I have been in remission from Grover's disease for about a year now, replaced with "atopic dermatitis," my definition for which is:  "We know you itch, but we don't know why"!  I still use topical steroids as needed, and I have found CeraVe Itch Relief Moisturizing Lotion helpful.

March 2024 Update:  I'm still in remission, but the burning and itching on my legs is mostly gone, as are the bumps on my sides. I still have a bit of a problem center back, and a small problem around my neck and front shoulder area. The heat sensation on my head (which may or may not be related to cell damage from Grovers) continues unabated, and I am about to start a trial of Dupixent ($$$) which I have avoided due to cost up to now.

August 2024 Update: While on Dupixent, the occasional breakouts on the front of my shoulders and my sides subsided, and the heat sensation MAY have declined slightly; but overall, I didn't see enough improvement to justify $2000 every three months, so I discontinued the drug after the first 3-months. (Your cost can vary considerably in either direction.) Since discontinuing, no itching has increased, and the heat MAY have increased slightly.

The following is based on my research (especially the most useful Facebook Forum Grover's Disease Support Group) and personal experience.  (The Support Group has a surprising number of women members.  I don't know if this means that this is not primarily a men's disease as commonly believed, or if women tend to join support groups more than men.  I suspect the latter...)  You should also read the very detailed and informative post on Grover's disease in the Support Group once you are accepted as a member.

Recommendations

The number one thing you should know about Grover's disease that it affects people differently.  There is no standard cure, standard symptoms (other than extreme itching in most cases), no fixed duration, etc.  What works for one person does not necessarily work for another (which is why I have created this page).  Here is what else I have learned that has helped me or others.

• Heat and sweat are your enemies.  One article I read says that Grover's Disease "is believed to be caused by blockages in the sweat glands in the upper layers of skin," so there's that!  (I, personally, felt very hot on my neck and back in bed, or on my back and thighs in a chair.  I am guessing this is because the sweat glands are not operating normally to cool my body.)
• A limited amount of sunlight on bare skin is good, but not trapped heat or sweat.
• You can fight the itching in four ways:  Prescription meds, Over-the-Counter meds, Light treatments, and "natural" remedies, as listed below.
• Menthol is your friend!  It was my #1 go-to for relief, in several formats.

Prescription Meds

Creams

• Steroids:
  • Triamcinolone Acetonide Cream 0.1%.  This corticosteroid seems to be a dermatologist's first choice of treatment.  It helped me ... to a limited degree.  Be advised, though, that some people report a worsening of results with this and other steroid creams listed here.  I strongly recommend you TRY a steroid to see how it affects you, and don't shy away just because some people pan it. But do start with this one, not a stronger one at first.
  • Betamethasone Dipropionate Cream 0.05%.  This is a "super high potency" corticosteroid (to quote Wikipedia).  I found it more effective than Triamcinolone, but my dermatologist (and Wikipedia) warned against long term use, as it may have adverse affects (like thinning the skin).  My conclusion is to use it in small areas, and not for more than a few days on the same spot; or back off of it completely for a while.  In other words, use it for spot treatment in conjunction with other treatments if your itching is extreme at certain spots.  Personally, I have decided to use this as my primary steroid from now on, bit to use it only as necessary.
  • Mometasone Furoate 0.1%.  While some folks have reported using this, it seems more oriented toward other uses than skin conditions.
  • Clobetasol Propionate.  An especially strong steroid.  Wikipedia says:  "Use should be short term and only if other weaker corticosteroids are not effective."  I am using it very selectively on severe spots myself.  I have been advised not to use it on my face because I have a bit of rosacea, and this product specifically warns about not using with rosacea.  The doctor also suggests not using it on my neck (where I use Pimecrolimus instead).
• Calcipotriene Cream (Dovonex) 0.005%.  This cream is sold for the treatment of psoriasis and is considered quite safe.  It is expensive, but a GoodRx coupon should get you a 60mg tube for around $70.  I think the cream is cheaper than the ointment, so ask for that if you try this.  Some people have reported positive results.  It is my understanding that it takes about 2 weeks to see results.  I used a tube twice daily in the worst area of my body (neck and clavicle) and noted there is no relief of itching and non-definitive results of bump reduction for me.  Your results may vary.
• Doxycycline (an antibiotic).  While I haven't tried this, a number of Facebook users have, and they have almost all reported no positive results.  They also warn about staying out of the sun if you try this product as it causes skin sensitivity to sunlight.
• Pimecrolimus (Elidel), pronounced with the emphasis on "cro".  This cream is used in the treatment of atopic dermatitis.  It is not covered by my Medicare Prescription Drug plan (when prescribed for Grover's... have it prescribed for atopic dermatitis), so I am using GoodRx to get a discount (down as low as $75, but more likely $100 or so...).  I was told that if I eventually want to try Dupixent (using a different drug plan next year), it is likely that they will require that this drug be tried first (because it is so much cheaper).  Turns out this stuff has dramatically reduced the bumps on my neck and stopped them from creeping up over my chin!  Definitely worth a try.  (It did nothing for my rosacea, though, which I am now treating with Metronidazole.  I didn't know I had rosacea!  This is helping significantly with the sensitivity of the skin on my face.)

Pills

• Hydroxyzine HCL 25mg.  A prescription antihistamine.  Can cause drowsiness, so you may want to take it in the evening.  Did nothing for me, but it's a well-known med.  (I don't think my problems are histamine based, and its side effect of drowsiness to help me sleep works variably for me, maybe better for you.  Worth trying.  Curiously, my new insurance carrier doesn't cover it, but it is relatively cheap.)
• Diphenhydramine (trade names include Benadryl, Unisom, Nytol).  It is another powerful prescription antihistamine, whose side effects include sleepiness (good!) and upset stomach (bad...).  I presume the Benadryl you purchase OTC is a lower dose.
• Acitretin (Soriatane).  Now we are into the big time.  You need a blood test before prescribing and periodically with continued use.  Has some significant side effects (like hair falling out).  This is in the same category as Accutane, I believe.  A serious drug for a serious problem.  Someone report being "cured" in just one month, lucky soul.  CAUTION:  This is a very expensive drug.  Before you fill a prescription be sure to look it up on GoodRx.com.  My first month's supply with insurance would have cost me $560 (in large part satisfying a deductible); but with GoodRx, I effectively got a two month supply for $90 (but only one store offered that price, the others typically around $230).  So far (3 weeks as I write this sentence) I have had neither noticeable positive nor negative effects except an occasional upset stomach; and my dermatologist is upping the dosage to 25mg/day as opposed to every two days.  Update:  Now in my 4th week, in addition to increased itching, new red spots, and sleeplessness, I had a bad 24 hour stomach ache; but my dermatologist wants me to continue pending no stomach problems and a new series of blood tests.  Update:  The blood work came out OK, but because stomach problems have persisted, I have stopped taking it.
• Methotrexate (pills or injection).  This falls into the works for some, not others, class, like most treatments.  It is actually a chemotherapy agent, sometimes used for psoriasis.  Be careful.  Serous stuff.
• Zolpidem.  I am listing this reluctantly, as it only has an indirect effect on Grover's Disease.  It is the generic form of Ambien; in other words, it is a "sleeping pill."  Its advantage is that for those of us with severe itching, it is very difficult to fall asleep; and this pill works, removing that incredible frustration for awhile.  I believe it is normally prescribed at 10mg, but if you can get away with 5mg, you should.  Zolpidem has potential negative side effects (including addiction and getting up and doing things in your sleep), and you should discuss these with your doctor before taking any.  Another drug you can discuss with your doctor is Trazadone (left me dizzy in the morning).  OTC alternatives include Unisom Sleep Tablets.  I don't think Melatonin has ever worked well for me, though I have restarted taking 5mg tablets occasionally before bed.

Injections

• Dupixent.  I did not try this until March 2024, as discussed earlier. You can not get insurance coverage if it is prescribed for Grover's Disease per se (that is, it has to be prescribed for some other specific form of dermatitis, typically atopic dermatitis).  The pre-insurance cost is about $1800 per dose, with two doses required per month on an ongoing basis.  (GoodRx will not help, but buying 3-months at a time will.)  Results vary, but for some, this is very effective at reducing itching.  Facebook user LLP wrote:  "Dupixent put an end to the whole nightmare." Many insurance companies will not cover this drug at all, but some lucky folks have written they have a $0 copay.  And if you live in Australia, the price is reportedly $42!  (Note that your insurance company may require that you have tried other drugs first, including Pimecrolimus (Elidel), as noted above.)

OTC Meds

Creams, Lotions, and Powders

The three OTC ingredients that fight itching seem to be Menthol, Pramoxine, and Zinc Oxide.  This section discusses medications I have tried or heard about.  All the blue texts are Amazon purchase links*, not to my benefit. NOTE that these comments were written during my active Grover's period, and I no longer use any of them regularly.

• Sarna Anti-Itch Lotion.  This has helped me and lots of other folks.  You should note that it comes in two varieties (Regular and Sensitive Skin), and they have very different ingredients.  It is also available in generic form (i.e., drug store brand, like Walgreens).
  • Regular Sarna:  This has 0.5% Camphor and 0.5% Menthol, so it gives you a bit of "cold therapy" relief (but has a noticeable odor).  Works pretty well for me.  My #1 choice.
  • Sensitive Skin:  This contains 1% Pramoxine Hydrochloride.  This has not been as effective for me, but your experience may be different.  I use it alternatively with Regular Sarna, particularly if going out in public.
• DerMend.  This is another 1% Pramoxine Hydrochloride product.  It would seem to be an alternative to Sarna's Sensitive Skin product.
• Itch-X.  This is another 1% Pramoxine Hydrochloride product, but it also contains Benzyl alcohol 10%.  It's a gel; it goes on very easily and has no odor.
• Biofreeze.  Interesting stuff!  I can't live without it!  It comes as a gel, roll-on, or spray and leaves your skin "chilled."  My amateur theory is that the chilling disrupts the nerves, either suppressing their ability to transmit the itching sensation or overpowering it.  The gel (which I don't particularly like because the product that comes out sticks together so well you may find it dropping in a clump on the floor) contains 4% Menthol.  The roll-on comes as 4% or 5% Menthol and offers an easy way to treat spots, but it is not as effective as the spray at stopping severe itching.  The spray contains 10.5% Menthol.  Personally, I love the spray.  You can hold it close to zap a spot, or you can hold it over your shoulder, for example, to spray a large area of your back.  Once the liquid is on your skin, you can either leave it alone or spread it around further with your finger.  You will feel cold afterwards for quite awhile, but it sure beats itching!  If you have not used a menthol product before, I suggest you don't start with the spray, though, and do avoid sensitive spots on your body like underarms or "down there" (and don't let the spray hit your eyes or touch your fingers to your eye after using).
  Notes! 
  • I have been using the 3-oz green can readily available in stores.  I recently tried the 4-oz green can on Amazon; however, I don't like the nozzle as much as the 3-oz can, as it is harder to tell direction, especially in the dark (I have sprayed myself in the face...).  The white 4-oz "Professional" version is a curiosity to me, as sometimes it is listed as having 5% menthol, sometimes 10.5%, so I have avoided it.  I have not tried it, but it might be better for those who find 10.5% too strong, if you find a 5% version.  There is also a 360° spray in a can which looks like the Professional one.
  • I thought I would try other brands (Icy Hot and Walgreens) because they have 16% menthol.  Both had very fine sprays that permeated the air, with less effect on my skin.  Not recommended!
  • Conclusion:  The original 3 oz green can Biofreeze 10.5% has the best spray, nozzle, and concentration, so it's the one for me.  Trust me, I use a lot of it, along with Regular Sarna Lotion!  Each lasts me about 10 days.
• Lidocaine cream.  As you might expect, these products have a numbing effect on the itching for awhile.  I have used a generic 4% cream to positive effect.  I also use Medcosa Itch Relief Cream (4% Lidocaine, 1% Menthol) which is very easy to spread.  In addition I use a product from a trusted company:  Salonpas Lidocaine Plus (4% Lidocaine, 1% Benzyl Alcohol, available as both a roll-on and a cream that looks like a gel).  It works pretty well but is hard to find in single quantities on Amazon.  I like their roll-on best.
• CAUTION:  Pricing on Lidocaine products is wacky!  The Medcosa is $2.60 per ounce, while some other products run over $40 per ounce!
• Calmoseptine Ointment.  Lanolin, Menthol, Zinc Oxide, Petrolatum.  Moisturizing and "calming" ingredients.  I do NOT like this because it is very thick, making it harder to spread and leaving you with a white coating.
• Flanax.  This contains 10% Menthol plus two other chemicals.  It has a very strong smell, sort-of peppermint menthol.  You could use this for spot treatment, but never when going out in public soon after!  I will probably not buy again due to the very strong smell.  Some people swear by it.
• Benadryl Extra Strength Itch Stopping Cream.  This contains 2% Diphenhydramine Hydrochloride and 0.1% Zinc Acetate.  It helps somewhat and is worth trying.
• Eczur Cream by Elimia.  Hard to find, but some people highly recommend it.  Seems to be a more "natural" product.  Haven't tried it.
• Gold Bond Lotion, Cream, or Powder.  Many people seem to recommend this (Mentholated powder in particular).  There seem to be many kinds, however.  If you search "Gold Bond" on Amazon, you will be presented with a dizzying choice!  I am currently trying Gold Bond Ultimate Eczema Relief 2% Colloidal Oatmeal with limited relief.  I also tried Gold Bond Extra Strength Medicated Powder (green bottle), which keeps getting recommended by Support Group members, some even sprinkling it on sheets at night.  It doesn't seem to help me much, though I support trying it; but of course powder is powder and can get on everything.  The 4-oz can is hard to find at a reasonable price, but CVS carries it.  I am also trying Gold Bond Rapid Relief Anti-Itch Cream, which is a mix of 1% Menthol and 1% Pramoxine.
• Zinc Oxide.  Several users highly recommended products with zinc oxide.  I tried Boudreaux's Butt Paste Diaper Rash Cream, Maximum Strength, which worked well for one forum user; but I have discarded it after one use because (1) it is extremely thick, like the Calmoseptine, and I got the feeling it may have blocked subsequent applications of other products, which were necessary because, (2) it didn't stop the itching worth beans.  Recently (4/23) people have been recommending 40% Desitin.
• AmLactin or other products with ammonium lactate.  The one I tried smelled awful!
• Products with 20-40% urea cream (per my dermatologist, but not tried).
• Theraplex FT.  Contains salicylic acid, which can be used for exfoliation.  Not tried.
• Eucrisa Ointment (crisaborole).  Doesn't work immediately when applied, but pretty effective for itching after awhile.  Very expensive ($1500 retail, $700 with GoodRx, Tier 4 drug).
• Witch Hazel.  A blast from the past!  I've used the liquid, but I just found Witch Hazel Wipes, which solves the problem of how to apply the liquid.  Witch Hazel not only offers a slightly cooling effect, but it will clean away whatever cream or lotion you last used before you try a new one.  Some people mist it on their body.  Results are generally positive for relief of itching.
• Avene Xeracalm Lipid-replenishing cream.  A number of people find this really works well for them, applied daily, all over affected areas.  Avene website, or Avene on Amazon.
• Anti-Dandruff Shampoos rubbed on skin and left there 5 minutes.  My dermatologist says this is primarily for folks who have a common yeast infection on their skin, and her choice would be Selsun Blue Medicated, selenium sulfide being the active ingredient.  Some Support Group members say this type of self-treatment has helped them.  Member Craig B wrote:  "...  I cover the red sores and bumps on my chest with powder.  After about two weeks of that approach, each time I shower with Selsun shampoo my bumps and rash appear more 'skin tone', with less redness. Then the bumps dry up, become crusty, and fall off."  He warns not to cover your skin with moisturizers while you have "active" red bumps; and when they are healed, go light with moisturizers, because the moisturizer can clog pores, starting the cycle over.  I find that to be an interesting comment, because other people say always use a moisturizer before putting on other products.  My dermatologist did not agree, so I don't use a separate moisturizer ever.  My technique for experimenting with this shampoo has been to put it on prior to entering the shower, then do everything at the sink (brush teeth, take pills, etc.) before entering the shower.  I wet just my head in the shower to apply Selsun or regular shampoo, avoiding washing the shampoo off my body as long as possible.  While the jury is out for me, I do feel this is worth trying, and it may have contributed to less redness of the bumps and possibly has reduced itching a bit.  Please note that the product is very dark and thick, so mentally prepare yourself, and don't drip it!

Pills

• Cetirizine (generic Zyrtec).  My dermatologist said to take it twice daily instead of the once per day normal dosage.  Didn't do a thing for me initially, but helps others.  I have restarted this at night with seemingly good results, now that it is unclear whether I have Grover's or some form of eczema.
• Benadryl.  It's a classic, but it didn't help me. Made me nauseous.
• Pepcid 20 mg (Famotidine).  Used primarily for gastrointestinal problems, but it is also fights the histamines made in the stomach for digestion.  One person suggested it as an alternative to Benadryl.  My dermatologist did mention this also.
• Fish Oil for Omega-3 has been recommended by some.  I have been taking it for years, so I can't remark on how it has helped me.
• Turmeric may be helpful, too, but like Fish Oil, it will be hard to tell, I think.  I have also been taking this for years for an unrelated problem.
• Cilantro Pills.  Someone reported positive results with this (3Q22) on Facebook and was supported by others.  I'm interested, because I can't stand the taste of cilantro; yet many FB users report positive results with cilantro shakes (see below).  The specific product referenced was MauWe Herbs Cilantro Capsules.

Natural Remedies

• Gel Freezer Packs.  I have found that cold packs help in bed against my head and back (which always feels very hot at night).  Obviously I'm talking about the relatively thin flexible ones, not the hard thick ones!
•  Cooling Vest (pictured right).  This seems particularly helpful if someone works outside.  One person said they got 6 hours out of it!  Here is a different design cooling vest from Amazon.
• Turmeric Oil.  Personally, I have found this helpful, and I tend to use it first thing in the morning to "hold" me over during the day, when the itching isn't so bad (that was the old days for me...).  Note that it should always be mixed with oil (I use Palmer's Cocoa Butter Formula Skin Therapy Moisturizing Body Oil).  Not only is the oil good for your skin, but it keeps the turmeric from staining your skin yellow!  I have been told that there are many "grades" of turmeric oil, and I am using a rather expensive one by doTerra, which I get from a healthcare provider.  I'm open to less expensive versions!  Note that use of Turmeric in its various forms is somewhat controversial, as there have not been definitive studies. 
• Limited Sun.  As my dermatologist says, this seems counterintuitive, but a limited amount of sun exposure (say 10 minutes per side) can be helpful.  Given that some folks take "light" treatment (albeit at certain frequencies), there is some merit here.  Just don't get sweaty and cool off afterwards!
• Sensitive Skin Products.  This would include laundry detergents, fabric softeners, shampoos, deodorants, shampoos, etc., but can also involve avoiding perfumes, colognes, animal hair, latex, and the list goes on.  Note that one doctor writes, "Soap is bad for Grover's disease involved skin."  He recommends using only water on inflamed areas.
• Avoid classic allergy items.  While you may not be allergic to them per se, Grover's affected skin can react badly (as adhesive tape and mushrooms have done for me).  Thus the "Sensitive Skin Products" list above.
• Red Wine Sulfite and Histamine Filters.  I hesitate to call them removers, but there are numerous products on the market that claim to filter out sulfites and histamines (!).  Read carefully and try one or two.  Some folks swear by them, but there are so many things that cause Grover's itching that it's hard to lay a solution on one product.  I started using one (because I drink red wine daily); and after I used it up, I concluded this is not my problem or solution.
• Bathing:  If you are a member of the Grover's Facebook Group, check out this detailed list regarding soap and bathing from Jennifer Ray.
• Cilantro shakes.  While you'll never get me to try one (I'm one of the 20% of the population with a genetic extreme dislike for cilantro - but note the pill option above), lots of folks seem to say they are helpful.  One article I read says, "... perhaps the most effective remedy for Grover's Disease is cilantro."  On Facebook, Linda Beattie gave this recipe: 
  Cilantro & Chlorella Smoothie
  1. Cilantro about 1/3 bunch of it
  2. Organic Chlorella 1 scoop that’s included in container.  I order the Chlorella off Amazon.
  3. Water or milk or half and half of both. I prefer both.
  4. 1 or 2 scoops of protein powder, scoop in container.  I use strawberry banana flavor
  5. Frozen fruit is something I add when I feel like adding some.
  6. Be creative remembering that the Cilantro and Chlorella are NOT negotiable.
  7. Put everything in [a blender] and enjoy!

Other Options

• Phototherapy (Light) Treatments.  These can either be at a professional facility (often paid for by insurance), or with home kits.  The primary type of light you want is UVB Narrowband.  It takes about 4 weeks of 3x/week treatments before positive results may be seen.  (My back cleared after about 10 treatments, but it took until 16 to find my chest clearing.  When I switched providers, they dropped the exposure 25%, which is normal to protect against newer lamps, for instance, and I also dropped to 2x/week.  This triggered a slight worsening; but when I got back to the same exposure, my skin mostly cleared.)  This is a big commitment of your time (for the 3x/week driving and waiting, not the few minutes for treatment), and a facility offering it may be hard to find (I have to drive 30 minutes each way).  See the Facebook Grover's Discussion Group for more comments.
• Treatment starts with a very short exposure (maybe 20 seconds) and works up to maybe 4-5 minutes per session max.  As of September 2022, I am running a minute-and-a-half.
• Your dermatologist will specify how much of your body should be exposed to the light; for example (as in my case), neck through waist.  (My head is covered by a towel I have to hold in place.)  If you later add more skin, you will have to start exposure times over, so get it right the first time!
• Note:  When asked, one person in the Facebook Group who had completed Phototherapy said he saw results after 9 treatments (3 weeks) and felt he could have quit at around 20 treatments.  I agree with that assessment.  Whether or not you need to continue will depend on whether or not your Grover's red bumps have disappeared.
• There are home kits for this, but nothing as elaborate as the commercial treatment stations shown to the right.  If you find commercial treatments effective, your dermatologist should be able to write you a prescription for a home kit (typically a flat, rolling panel of lights).

And In Conclusion ...

As I said at the start, I'm no expert, and I'm just trying to gather helpful information in one place for fellow sufferers.  There is no one solution, but these are some to try.  For me, there was no better relief than menthol, and my dermatologist says it will not damage the skin (whew!).  Feel free to write me via the email link below what has worked for you or any other comments on this article.  Good luck!

Fred

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