Fred Brack   Fred Brack  
Raleigh, NC
Picture of the Cape Hatteras lighthouse

Recommendations for Treating Grover's Disease
by Fred Brack
Updated

Fred's Chest with Grover's DiseaseIn 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 MORE!

Definition

Grover's disease (Transient Acantholytic* Dermatosis):

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 desmosomesDiagnosis 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

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.)

Fred's leg showing rash from adhesive tapeThe 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, 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.  Updated 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 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.

Prescription Meds

Creams

Pills

Injections

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.

Pills

Natural Remedies

Phototherapy BoothOther Options

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!

Fred

* 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.