Grover's Disease: What works to help find relief?

Posted by 43219876x @43219876x, Sep 23, 2016

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?

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@cruthefp

76 yr old white male diagnosed with Grover's. Rash has spread down arms to palms & back of hands and down to upper thighs, just started getting blisters, extremely itchy, head does not appear to have lesions but is also itchy, though not normally cold I feel chilled in 78* apartment. Also losing sleep.
Prescribed triamcinolone acetonide cream USP 0.1% and betamethasone dipropionate cream 0.05% by Dermatologist.
There were no dietary or environmental changes prior to onset.
Concerned that spread to palms of hands will limit use.
Is tetracycline likely mot help?

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If you're like me you will try everything! Steroid creams help many (otherwise they wouldn't be used). For me they didn't do enough. I found a high strength 10% menthol cream, like Ben Gay, Icy Hot or knock-offs to be extremely effective in stopping the itch for 6 hours or so. Sometimes I mix with the steroid cream. Others here were helped (some dramatically) by Cilantro smoothies. Not me. I found two things in addition to the 10% menthol to help decrease symptoms by 70% or more: sleeping in a hammock (the key here is ventilation…make sure bedding and clothing and arm chairs are breathable) and antihistamine (Claritin in the AM and Benydryl before bed).

More on ventilation. Anything non-porous is bad: leather upholstry, foam or water mattresses, memory foam toppers, tight fitting polyester clothing, etc. . Your skin needs to breathe. Place one of those throw pillows with batting (not foam) between your back and your leather arm chair. Use a mattress cover that is made of bamboo or cotton I'm 67 and sleep in a hammock, but won't be able to do it forever because its difficult to get out of it in the middle of the night. So eventually I'll need to return to a mattress. The key is breathability.

Then there is UV narrowband light. My Doc has great success with it, but it requires going in five times a week for six months, then continuing twice a week maybe forever. So far I haven't been willing.

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@cruthefp

76 yr old white male diagnosed with Grover's. Rash has spread down arms to palms & back of hands and down to upper thighs, just started getting blisters, extremely itchy, head does not appear to have lesions but is also itchy, though not normally cold I feel chilled in 78* apartment. Also losing sleep.
Prescribed triamcinolone acetonide cream USP 0.1% and betamethasone dipropionate cream 0.05% by Dermatologist.
There were no dietary or environmental changes prior to onset.
Concerned that spread to palms of hands will limit use.
Is tetracycline likely mot help?

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Sorry to learn of the severity for you. For ~20 yrs. mine comes and goes for months at a time and has been confined to torso. I once had a PCP RX tetracycline for rash, but the side effects appeared to outweigh the possible benefit.

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@cruthefp

76 yr old white male diagnosed with Grover's. Rash has spread down arms to palms & back of hands and down to upper thighs, just started getting blisters, extremely itchy, head does not appear to have lesions but is also itchy, though not normally cold I feel chilled in 78* apartment. Also losing sleep.
Prescribed triamcinolone acetonide cream USP 0.1% and betamethasone dipropionate cream 0.05% by Dermatologist.
There were no dietary or environmental changes prior to onset.
Concerned that spread to palms of hands will limit use.
Is tetracycline likely mot help?

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Steroids will give you temporary relief, but you can't take them for more than a week. Different things work for different people. My best advice is to go back to the beginning of this blog and start reading. There is a lot of really good advice here, more than any doctor can prescribe.

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@honestclifford

I should have added that while I was taking the three homeopathic medicines, I also started taking Zyrtec (over the counter allergy medicine). Initially, when the symptoms were raging, I took two tablets per evening (the dermatologist said I could), and as symptoms eased I took one tablet and finally none.

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I haven’t posted in a while as my Grover’s had been fairly mild the past couple of years just erupting briefly on torso or legs. I recently had very bad flu virus. I have now erupted with itchy blistery lesions on my finger. A strange location. With the news reports I’m concerned about monkey pox but most likely Grover’s. Can viruses cause eruptions?
I use steroid cream but little relief.

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@help4meandu

I haven’t posted in a while as my Grover’s had been fairly mild the past couple of years just erupting briefly on torso or legs. I recently had very bad flu virus. I have now erupted with itchy blistery lesions on my finger. A strange location. With the news reports I’m concerned about monkey pox but most likely Grover’s. Can viruses cause eruptions?
I use steroid cream but little relief.

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Soak your hands in ice water, hold an ice pack against other areas (with a piece of a t-shirt) between skin and pack. This will relieve itching better than any agent. Relief lasts for a while once the skin is chilled.

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@krissm77

Hi! I’m 45 and diagnosed with GD almost a year ago. I have tried ointments and oral but nothing has helped. I’m currently on prednisone but interested in trying accurate next. Any suggestions? Also dies following a grain free diet help? Thank you!

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I am 52, diagnosed 2 1/2 yrs ago with GD by my Dermatologist, confirmed with a biopsy.
My rash began after a weekend at the beach. It has never gone away. I have done steroids, ketaconazole, triamacinalone creams. The breast center told me to try Vagasil powder under my breasts and on my sternum (this is the only place the rash is). Nothing helps!!!!!
I just spent the weekend on a motorcycle ride and I was miserable. In 2 1/2 years it has not gotten any better, the rash remains, some slight scabbing, itching, and burning when showering.
Something has got to help with this!

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@gardeningjunkie

What most Grover's ladies do is remove the bra as soon as possible at home and some just go braless in public if they can get away with it. I have found 100% cotton without the wrinkle free chemical process or stainguard chemicals or 100% polyester camp style shirts which are safe for me, those with 2 pockets over the breast do a fine job of covering the bralessness, but I am small busted. Also with Grover's either find some soft cotton loose fitting Hawaiian style Mu Mu's, grandma style housedresses. They are simple to sew your own as I first tried to order online the fabric was too coarse for my sensitive skin. The gathering of this style house dress allows me to go bra free without anyone noticing. The looser your clothing is the better. My image will become secondary to desire to live pain free. . Grover's is triggered by heat, sweat and friction/pressure. For a light cotton which is safe for me I order from The White Cotton Gown my nighties. 100% cotton, well made and airy, but they hold up for years. I'd had mine for 3 years and still no sign of wear. At the end of the day I love to put this nighty on even the lace is 100% cotton. I also have Allergic Contact Dermatitis and am allergic to elastics, spandex and blended fibers. Even my bras are 100% cotton with drawstring closures. If you are large busted this would be a problem. There are also 100% cotton panties sold at Cottonique, on line, with the drawstring closure. The main thing is now no pressure, so no tight elastic around your waist, torso and definitely no underwires. Grover's normally is located in front and back torso and has gotten as low as my waist in the back. This may sound shocking, but my gynecologist told me years ago to give up all panties as they trap heat and will breed yeast, an ongoing issue I have for a decade. I often wear a 100% cotton long slip under the mu mu's at home without the panties and yes my yeast issues have been minimal if at all. Yet I have also eliminated my diet which was rich in the fruit that breed yeast, so sad, but now eat safe fruit only. Also you mentioned Victoria Secret. First none of their fibers are safe for me, let alone the chemicals they add to their clothing. Also the underwire pressure will trigger your Grover's. Hang loose sister! I know Facebook has a Grover's site, but I don't have time for Facebook, but you would learn more from others.

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I wholeheartedly agree with all of this. My problem is, when I take my bra off the skin sticks together causing even more pain. I am not overweight and am a D cup, so naturally the breast will touch. I have ordered a bra liner in hopes that will help.

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Good idea about bra liner, it may help but it won't help between breasts of your size but as you pointed out you need support with your size. Did I mention that Cottonique has a high quality bra liner? I have elastic allergies so must remove the elastic cotton wrapped band on the bottom and replace with a cotton draw string. I think in the summer heat, if you change your liner when you perspire you will be more comfortable too.
I have mentioned I dealt with GD for years, with it coming and going cyclically until I tried blended cilantro which helped me and almost 50% of us. I'm still clear today, but if I feel that tingly sensation under my upper back torso, where it normally starts, and feel tiny bumps under my skin for several days I make a tonic of 1/2 bunch of cilantro and 1/2 cup of water and chug it down holding my breath, that way I don't taste it and follow with a glass of water I used to add it to my morning smoothie, but it ruins the delicious taste. Cilantro is a natural heavy metal detox, so it helps in many ways.

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I was diagnosed a year and a half ago. It went away after a course of prednisone and was not so bad for a year, then it came back, another course of prednisone and it went away but came back as soon as I went off it. Since then I have been using a steroid cream, Dr Bronners baby soap, jojoba oil ( instead of lotions or creams after bathing ), vitamin A and D and cilantro smoothies every morning for the past month and whatever out of all that …. It is slowing going away.

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And switched out all my bras to organic cotton bras

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@kwarner699

I am 52, diagnosed 2 1/2 yrs ago with GD by my Dermatologist, confirmed with a biopsy.
My rash began after a weekend at the beach. It has never gone away. I have done steroids, ketaconazole, triamacinalone creams. The breast center told me to try Vagasil powder under my breasts and on my sternum (this is the only place the rash is). Nothing helps!!!!!
I just spent the weekend on a motorcycle ride and I was miserable. In 2 1/2 years it has not gotten any better, the rash remains, some slight scabbing, itching, and burning when showering.
Something has got to help with this!

Jump to this post

Try using Dr Bronners baby soap instead of regular soap and try jojoba oil after you shower, it soaks in and does not feel oily. I am also worried about a week long motorcycle ride/rally coming up in July … the heat making it worse ….

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I’ve had Grover’s (TAD) since 1975, when I was 31. Dermatologists at Temple University Skin and Caner Hospital first thought it was Darier Disease, but after biopsy it was found to be Grover’s.

The rash first manifested after a severe sunburn, and has come and gone ever since. Over the past 46 years, I have seen in excess of 10 dermatologists in about as many venues. This last outbreak has been with me for more than a year. Some have lasted 5 years.

Only two treatments have been effective:
1. Oral Prednisone.
2. Photo therapy.

Prednisone drives up my blood sugar, but clears it right up. Photo therapy has no side effects, but the VA Hospital in Philadelphia suspended treatment as Covid spread. I’m hoping to resume treatment soon.

I can’t believe there’s a cream or OTC treatment I have not tried. I've used two prescription creams—Clobetasol and Triamcinolone with some success.

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