Recommendations for Treating Grover's Disease
by Fred Brack
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. I UPDATE THIS PAGE FREQUENTLY AS I LEARN
Grover's disease (Transient
- has unknown origins;
- affects roughly 0.1% off 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
- 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.
doctor wrote, "Treatment often seems unsatisfactory." Yep.
means loss of intercellular connections between epidermal cells due to the
breakdown of intercellular bridges such as
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.
for this and some other facts above.)
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
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
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
To make a long story short, 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 has passed. At night, my head, neck, and
back feel very hot in bed, though the skin is not hot. My
dermatologist has no explanation. I often lie on gel packs.
As of August 2022, the internal heat continues with no explanation;
however, I appear to have had positive results from two things:
phototherapy and Elidel cream (Pimecrolimus). As I update this page in
September 2022, my chest and back are mostly clear (I believe from
phototherapy), and the Pimecrolimus has 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 am continuing with phototherapy.
The following is based on my research (especially the most useful Facebook
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.
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, feel 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
- Menthol is your friend! It's my #1 go-to for relief, in several
- 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
- 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 daily on the same spot; or
back off of it completely for awhile.
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 sole steroid from now on, and to use only
- Mometasone Furoate 0.1%. While some folks
have reported using this, it seems more oriented toward other uses than
- Clobetasol Propionate. An especially strong
steroid. Wikipedia says: "Use should be short term and only if other weaker
corticosteroids are not effective." I would suggest using it
very selectively. That said, I am about to try this myself
(mid-October) because I have an extemely itchy breakout on my back that
is not responding to Betamethasone. 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.
- 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.
- 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.
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). Turn 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.)
- 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 is not working well for
me, but maybe for you. Worth trying.)
- Diphenhydramine (trade names include Benadryl, Unisom,
Nytol). It is another powerful prescription antihistamine, who 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
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. Melatonin
drugs have never worked for me, though I have restarted taking 5mg tablets
occasionally before bed.
- Dupixent. I have not tried this, and 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 cost is about $1800 per dose,
with two doses required per month on an ongoing basis. (GoodRx will
not help.) 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.)
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.
- 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).
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
(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
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
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).
- 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
- Calmoseptine Ointment. Lanolin, Menthol,
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
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.
- 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).
Contains salicylic acid, which can be used for exfoliation.
- 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. One person
swears by this, 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
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
- 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, but helps others.
- 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
Cilantro Pills. Someone reported positive results with this
recently (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.
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!
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
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
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
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]
- 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
- 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.
- 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 has been 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!
DISCLAIMER: Any links to Amazon products on this page contain a referral code
directly benefiting the American Council of the Blind, for whom I am a
contractor. They do not benefit me.