Mayo Clinic Connect
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?
As mentioned your input has been most inspiring to me. Even with good results my determination was starting to waver. I didn't mention I couldn't resist and ate an oatmeal cookie a few days ago- that's after almost 3 weeks of diligently following my no sugar plan and 1/2 a year of following low gluten plan. I had read the revered Karen Fischer books on eczema years ago and resisted attempting to follow her strict dietary plan. A month ago I picked up a used book, The Yeast Connection Handbook by William G Crook, MD written 20 years ago. Very simply written for the layperson. For once an author got my attention. I think it was the simple hand draw illustrations and graphs of what the wrong foods are doing to us that woke me up. The lights came on. On the cover it purports, How Yeasts Can Make You Feel "Sick All Over" and the Steps You Need to take to Regain Your Health. In the book it also refers to the cross over with eczema which is an inflammatory condition and we both know how this inflammation can be torture and how we need to lower our inflammation. Yeasts in the body create inflammation, not sure how the yeasts are related to the histamines, but perhaps our histamines are trying to kill the yeasts and so inflammation occurs. Although written decades ago it has an addendum, 2006, with updated research, referencing studied herbal treatments that have been amazing and he documents. Actually doing as well as PX Diflucan. So daily I added oregano, either fresh from the garden and/or oregano oil capsule , caprylic acid capsule, kolorex capsule. My go to breakfast now is a smoothie with kefir (dairy) or probiotic plain yogurt (dairy), almond milk plain, carrot (the big carrots have all the flavor), cucumber or zucchini and fresh oregano from garden with a pinch or 2 of Stevia (only allowed artificial sweetener). I don't think I could enjoy this without some sweetener. Very drinkable along with 2 poached eggs. I tried adding kale to the smoothie- the #1 choice for benefits, yet I couldn't gag it down. I like it cooked with garlic and olive oil, but it takes a stronger will than mine to gag it down in a smoothie.
As mentioned, according to Dr. Crook (egad, what a name!) if this plan is followed for 2 months we can slowing add back occasion sugars, like you are doing now.
As mentioned, I am Grover's free right now. My Grover's was so bad I couldn't lay on my back, even driving a car i had to hunch over the steering wheel which is very fatiguing, but any pressure or friction was intensely painful. Yes my Grover's was itchy, but not as itchy as say my ACD issues on hands, yet Grover's is extremely painful. It would hurt even without pressure. Even in remission before I could always feel tiny bumps under my skin, yet now while still there, they are barely discernible. I can even take a hot shower again. Also gone is the constant feeling of having a bad sunburn on my back. My front torso was only moderately affected and never had anything on my sides, so that is how I could lay down. I would dread anyone wanting a hug, it just hurt too much!
A blessing is that I could hide it with clothing, so few new I had it.
Still I amazed at your strength, as I can't imagine dealing with it for 8 years; I would have lost my mind. I do get emotional and I am weeping for you now, and so hope you have a nice long break from your suffering. I know you are treasuring each day. They say if something doesn't kill us it will make us stronger and I know I am more compassionate, humble and grateful everyday and can't see that changing.
Liked by John, Volunteer Mentor, basslakeview
Hi all. I am happy to find this thread. My hubs was diagnosed a few months ago and it is rapidly spreading and he's starting to lose his mind. He has 2 different creams. One tube is blue and white, the other is read and white. They are said to eventually thin the skin and he feels like that's starting to happen. I need to find another solution to help him. He even scratches them while sleeping at night, subconsciously. I need to help him. It's breaking my heart for him.
Tell us exactly what he has been prescribed, probably steroids which thin the skin and I didn't have great success with those. I also was given a powerful corticosteroid shot, Kenalog 40 which helped my Allergic Contact Dermatitis internal symptoms but did nothing for my Grovers. My first outbreak lasted a year, with is common, but now consider myself lucky as some have it last for years, one person said she had it for 6 years before she had remission. I have had 2 subsequent outbreaks which lasted for 6 months and then I get about 4 months off, yet each new outbreak is not as severe as the first. I couldn't even lean back while driving of lay back in a chair. Pressure and friction hurt.
Several products seemed to help some:
Prescriptions 1. Calcipotriene Cream, 0.005%, this is a topical vitamin developed to help with psoriasis and took special approval by dermatologist for my Humana pharmacy insurance to approve. I use this at the start of breakout and all during. No magic bullet, yet started using this with second breakout and it was not as severe as the first. So does it help or are subsequent breakouts less severe?
2. Clindamycin Phosphate USP, 1%, I am confused about this one as internet describes it as being an antibiotic yet my doctor told me it was an anti-inflammatory. I use this if the bumps break and it keeps them from getting infected and seems to help them scab over faster.
Non- prescription 3. Flanax Linimento- only thing I have found to relieve itching, it will help within 5 minutes and gives some relief for about 30 minutes. I apply just before bed and then lay on my sides which have never broken out and this can give me time to fall asleep. Purchase on Amazon, small 2 oz bottle will last for several months, only remove with a q tip then dab on skin and spread with a long handled spoon to rashed area. Do not touch with fingers or if rubbing in by hand wear a disposable vinyl glove. If you rub your eyes or mouth the ingredient, capsaicin (red hot chili pepper) will burn! Yes it does burn Grovers rash for a minutes, yet it's a relief from the itch, then the burn goes away. Buy on Amazon, not a px. I also have ACD another form of eczema and this topical is free of any of my ACD allergens.
I have 3-4 forms of eczema now, beginning after age 55, and this year developed a new one and was prescribed Elidel,it is not a steroid but Elidel, 1% is an immunosuppressant and it truly helped my symptoms for the Perioral form of eczema, all cleared up in a matter of weeks, so I'm thinking I may try for next GD breakout.
Except for the Clindamycin all the prescriptions are expensive. For one px I am better going to GoodRX and getting their coupon than using my insurance. Yet even with back and front torso rashed up they last a long time. I grow weary of asking my husband to apply, plus I hate him seeing the ugly rash, so I have a long handled spoon and then can spread just a tiny amount of topical to back area without his help.
Yes this form of eczema can cause you to go crazy, no relief and worse at night with elevated histamine levels. Lack of sleep is a real issue, a form of torture. With my subsequent breakouts my pain and itching level was less so was able to sleep. Also I learned not to move once on in bed, if you turn over the pain wakes you. Somehow I trained myself.
He must avoid sweating and heat, yet my last breakout started in Feb of this year and went away mid August. This makes no sense. Please understand if you go to hug him why he flinches- it hurts as much as it itches. Now I even enjoy a warm shower, as with a break out warm water hurt, I could only handle cold or cool and of course water pressure had to be very low as water pressure hurt. At least I didn't have this happen to me until age 67, for so many it begins earlier in life.
Very little research done about this form of eczema. It won't kill us, but it makes sufferers so miserable we may wish we are dead. During the day activity kept me sane, a woman's work is never done and when busy I could forget about it for a few minutes. A good movie in the evening or book while laying on my side, could distract me. Night's in bed are long with nothing to distract us. You both need to pray that this will be his first and last outbreak, yes in some cases they only have one breakout. The name Transient Acantholytic Dermatosis, TAD, aka, Grover's Disease, GD, means it comes and goes and could also leave forever. For me it will now be a way of life I am afraid.
You are a caring and loving wife and I know he will appreciate your search seeking help for him.
Liked by ptownmama
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I greatly appreciate your response. he is currently prescribed mometasone (.1%) and aug. bethamethazone (.05%). It just seems to get worse daily (for many many months on end). We read this can go on for decades and I feel so badly for him. Thanks again I wrote down what you're taking and sent the doc. an email. 🙂
Both these meds are steroids. If these steroids are not working by now, doesn't seem like they will ever help. As mentioned steroids didn't help me with Grover's. True I am allergic to 1 of the 5 classes of steroids with a cross over to 2 others, so my options are more limited. There are many classes of steroids and perhaps your dermatologist could switch to a different class. In truth with my experience with eczema I have never heard of a person using 2 different steroids as the same time. I would like to hear from others if this is normal for treatment.
Surprising little info about Grovers. Go to dermnetnz, a New Zealand Dermatology site. They have easy and simple info on Grover's, plus I think they also have photos. My Grovers was confused and assumed to be ACD for a period of time, at least he has a name for his tormentor and no longer guessing about what he has. This condition creates a structural cellular change and even during symptom free periods I can feel little subsurface bumps under my skin. Now they are almost indiscernible, but I know they are just waiting for an excuse to be reactivated. I found it helpful to read and study about this disease and hopefully you can inspire him to get involved in searching for more information, my studies helped me to learn to accept my situation, it's just my new reality.
@gteach I did read on a few sites that sports bras can trigger the problem, so I am careful to wear them when I work out and then swap to something else. Mine seems to be related to the heat, sweat and moisture. So keeping things dry helps. I’ve been trying to read up more on diet but haven’t found any solid information yet. My family all did Whole30 earlier this year and seemed to help other inflammatory health symptoms for my husband but not sure there would be a link to Grover’s. Hope you are feeling better soon! Also for me the pain went away shortly after my treatment from the dermatologist.
Hi, I am new here and reading through the posts here and on other sites it is very interesting to read how others handle their GD. Mine started a couple of years ago but was only diagnosed from punch biopsies a couple of months ago. The first thing I did was stop wearing conventional bras and changed to oh so comfy and breathable bamboo shaper bras with no seams or wires. The rest of my body is covered in rashes but none under my breasts.
Hi, your poor hubby is not alone. GD is depressing and can really get you down. I find that a wet face cloth gently rubbed over the painful itchy areas does reduce the itch and cools the skin. Fresh aloe vera gel is also good for healing. Scrape the gel into a blender and then strain through a fine wire strainer into a small jar and keep in the fridge. I added a teaspoon of lemon juice to keep it green.
Bamboo is a good choice for those us that along with Grover's have Allergic Contact Dermatitis, ACD. I started with ACD and now 18 years later have 4 types of eczema, all unique in some way but may have overlapping symptoms also. Bras are an issue because not only does the pressure trigger Grovers, but I am allergic to an element in rubber, MBT, which is used to manufacture blended materials like poly-cotton, rayon, nylon, spandex, elastic and many more. 100% bamboo, 100% cotton, 100% polyester or 100% silk are safe. I buy underwear from Cottonique, as they have very soft cotton and many elastic free products. They sell a front tie bra which is safe for me and also a bras liner I remake into a stand alone bra, while it does contain a band of latex free elastic in a pocket at the bottom I must remove (I am not allergic to the latex in rubber but the MBT), remake a wider pocket and run a 100% cotton drawstring though the bottom to tighten. Nothing will take the place of elastic, but a loose camp style shirt is nice too as I have no need to wear a bra! Also bra goes off once at home.
Educating myself has been a reason for some of my success dealing with eczema. I began in earnest to search for answers 6 years ago when I began adding more forms of eczema and my ACD issues exploded. I even self diagnosed my most recent form, Perioral, because my derm assumed it was ACD and was treating it as such. The ACD treatments aggravated and fed the Perioral and because of my research I told her it was a new form and how to treat it and it was better in less than a week and gone within 3 weeks.
I have mentioned to others this site can be helpful, but I come here to share and help those desperately seeking answers and have not learned anything to help me, as I have figured out so much already. Go to the Inspire Network and signup for the skin or eczema blogs- that's where I learned an amazing amount. We mentor each other, not as volunteer mentors like on this site who may not be dealing with our personal diseases, but we are personal sufferers or parents of personal sufferers who have been learning and trying to cope and have first hand knowledge of how treatments work for them, what testing is available, dietary changes that improve control and so on.
As I have mentioned, as of right now I am eczema free, will forms return, sure, and then will at least have a name for what I have and know what to do about it or at the very least like with Grover's, because of my history, know how long to expect the new outbreak to last.
I was diagnosed with GD about 9 months ago, starting on my inner thighs, and now has spread from head to feet. The symptoms started with my wife itching, and 2 weeks later I had the same itching, and continued to track her itching to chest, back, and arms. Although the dermatologists are certain GD is not contagious, they cannot explain how we both have it (also eliminated scabbies). We of course thought it must be contact dermatitis, we changed bed, clothes, furniture, detergents, soap, food, etc., and had no effects. The itchy areas mostly do not have bumps or a rash associated, just terrible itching. TAC .1%, Eczema lotions with oatmeal provide only temporary relief, as do hot showers. Our next step is to try UV light treatments, as a close MD friend found this to be very effective.
Liked by jameswb
Hi @jameswb and welcome to Connect! You may have noticed that i moved your post on Grover's Disease to this existing discussion so you can read what others have posted, and can learn more from their experiences.
It must be difficult to be dealing with the same disease as your wife.
I wanted to introduce you to @gardeningjunkie @robrash and @ptownmama as they have Grover's and may be able to offer support and ideas to how to treat this disease.
Back to you @jameswb when will you begin UV light treatments?
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Any suggestions for bras? I’ve been looking as my current flare is not responding to treatment. Thanks on advance!
Planning to begin within the next 1-2 weeks, or as soon as I can get in!
I have both Grover's and ACD. Cottonique has some 100% cotton elastic free options, yet if you are large breasted you won't get much support. The side tie doesn't work at all. Their 100% cotton 3 front tie bra is adequate. Yet you will have a lumpy look under a knit, but fine with a 100% cotton or polyester button down shirt. The most comfortable one for me with small breast is their bra liner. It has a casing at the bottom with latex free elastic. I am not allergic to latex, but a different element in rubber, MBT which is in most elastic, spandex and blended fiber. I open the casing and remove elastic and replace with 100% cotton drawstring.
jameswb- go to the New Zealand Dermatology site and study Grover's, they also have photos. I have never heard of Grover's without a rash or bumps. I have 3 forms of eczema, Grover's is one and I am a classic case. New Zealand site list 5 criteria, and I have 4 of the 5 with the fifth being that most are male. It also list triggers. There are at least a dozen forms of eczema, even the NEA doesn't list Grover's as it is less common. I would search this site for other forms that may be more similar to your symptoms. Guessing what allergens you have won't work. Study the 5 Day Extended Patch Test for Allergic Contact Dermatitis. I guessed wrong for 10 years, after this test I learned what to avoid for this form and now am ACD symptom free. One of my various ACD symptoms was internal itching and stinging with no rash.
Hi – I am a 65 year-old woman, andI was just diagnosed with Grover's Disease by a punch biopsy. I've had the rash for 6 months now, and it came on pretty much overnight. Traveling from a vacation in Denmark, back to California. I also have Hashimoto's, and have been on a very specific diet for the past 4 years, called AIP, Autoimmune Paleo protocol. While in Denmark, I ended up eating several things off the diet, including gluten. So, not sure how much diet contributes to GD. Though, it's hard to imagine the symptoms could come on that quickly – I felt fine the entire 3 weeks I was in DK. It seemed to come on during travel home. I am also wondering if it could be autoimmune related in any way.
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