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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@impatient

I've struggled with Grover's for 2 years. It all seemed to start when I stayed at a very dirty airBnB. I liked to sleep with a pillow over my eyes, and when I woke in the morning, my eyebrows and eyelids itched like crazy, and things got worse from there. I developed rosacea on my face, and then the Grover's creeping steadily downward from there. I've read that demodex may be implicated in rosacea and Grover's. My doctor prescribed a host of medications and terminated some of them, usually with no discussion – dermatology practice seems chaotic in my city seems chaotic at best. Some meds were oil-based, and I've read that demodex feed on sebum, and my own experience was that oily creams and the like made the inflammation worse, so I've tended to just use the creams (although I think maybe petroleum-based oil is ok?) I've also read that part of the problem is that the skin reacts to the organisms' feces, and noticed that if I scrub itchy areas with a solution of witch hazel and alcohol, I get a beige-gray grime; and if any areas still itch after scrubbing and I go back over it, I get more grime off – in other words, the presence of the grime exacerbates the itching. This may just be because the skin is already irritated and is simply reacting to any kind of grime that may accumulate on it; but I've also started to wonder if there's a whole skin ecology involved; more about that below. Anyway, most of the meds I've tried haven't seemed to help much. The rash gets better and worse from time to time but has slowly and steadily spread from my shoulders down my chest, armpits, back, upper arms, and down to my wrists, in that order. Once an area's been colonized, the rash there never seems to go completely away. The initial sign of spreading is a fairly intense crawling feeling; then stinging as pink bumps pop out, then intense itching. I carefully resist scratching, or only scratch through clothing, but the bump seem easily inclined to turn into open sores and scab, although the scabs are small. My eyes are also itchier and blearier than before this all began; several times a day, I'll use a fingernail to gently scrape the crud from my eyelid edges. As for treatment, I've gradually developed a regimen that seems to help keep things bearable, although the itching woke me up in the middle of the night the other night; and if I neglect things, I'm quickly thrown back into torment. The regimen is: I scrub all areas with a solution of 2 parts witch hazel to one part 90% rubbing alcohol, trying to remove all grime; then a cortisone cream on particularly itchy areas; then slather on antibiotic cream – the latter really seems to help the healing, and this is one reason I wonder about the skin ecology – that if demodex are involved, maybe other kinds of bacteria also play a role, either in feeding them or simply in the inflammation. I do all that at least twice a day, morning and night, and it usually gives me at least 3 hours of relief from the itching; plus I also use Differin in certain areas to help things heal; and I also apply opthalmic ointment to my eyelid edges every night. And of course I wash my sheets, towels, and clothing two or three times more often than I used to, using tea tree oil in the wash and also in my shampoo and soap; and I only wear the softest cotton shirts, inside out since the seams feel torturously scratchy. If I do all this religiously, I can usually still function; but I estimate it's sucks up nearly 4 or 5 hours per day, and I still feel at least semi-tormented much of the time.

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Have you gotten a biopsy and formally diagnosed as having Grover's Disease? It sounds more like you may have scabies rather than Grover's. There was a woman on the GD facebook page that had both Grover's AND scabies and was misdiagnosed as just having GD. You mentioned "organism's feces". Grover's Disease is not an "organism" to my knowledge the cause is still unknown. Have you been tested or treated for scabies?

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@kimass1

Have you gotten a biopsy and formally diagnosed as having Grover's Disease? It sounds more like you may have scabies rather than Grover's. There was a woman on the GD facebook page that had both Grover's AND scabies and was misdiagnosed as just having GD. You mentioned "organism's feces". Grover's Disease is not an "organism" to my knowledge the cause is still unknown. Have you been tested or treated for scabies?

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Thanks for asking. Punch biopsy confirmed Grover's. I've read that demodex are suspected to have a role in both rosacea and Grover's. I don't know that I've been tested for scabies – would that have turned up in the punch biopsy?

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Does anyone know whether there's a quicker, easier way to ingest cilantro? I saw one person has used frozen, and I know there are powders… will those work as well, and how to make them edible in sufficient quantities?

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Frozen in a smoothie is the BEST way. Use the juices and fruits you love or yogurt….anything to mask the taste.
Powders, capsules and oils don't work the same.

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@impatient

Thanks for asking. Punch biopsy confirmed Grover's. I've read that demodex are suspected to have a role in both rosacea and Grover's. I don't know that I've been tested for scabies – would that have turned up in the punch biopsy?

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I'm not sure about that. But worth asking your Dr.

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@kimass1

I'm not sure about that. But worth asking your Dr.

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Thanks for sharing your experience and thoughts!

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@impatient

I've struggled with Grover's for 2 years. It all seemed to start when I stayed at a very dirty airBnB. I liked to sleep with a pillow over my eyes, and when I woke in the morning, my eyebrows and eyelids itched like crazy, and things got worse from there. I developed rosacea on my face, and then the Grover's creeping steadily downward from there. I've read that demodex may be implicated in rosacea and Grover's. My doctor prescribed a host of medications and terminated some of them, usually with no discussion – dermatology practice seems chaotic in my city seems chaotic at best. Some meds were oil-based, and I've read that demodex feed on sebum, and my own experience was that oily creams and the like made the inflammation worse, so I've tended to just use the creams (although I think maybe petroleum-based oil is ok?) I've also read that part of the problem is that the skin reacts to the organisms' feces, and noticed that if I scrub itchy areas with a solution of witch hazel and alcohol, I get a beige-gray grime; and if any areas still itch after scrubbing and I go back over it, I get more grime off – in other words, the presence of the grime exacerbates the itching. This may just be because the skin is already irritated and is simply reacting to any kind of grime that may accumulate on it; but I've also started to wonder if there's a whole skin ecology involved; more about that below. Anyway, most of the meds I've tried haven't seemed to help much. The rash gets better and worse from time to time but has slowly and steadily spread from my shoulders down my chest, armpits, back, upper arms, and down to my wrists, in that order. Once an area's been colonized, the rash there never seems to go completely away. The initial sign of spreading is a fairly intense crawling feeling; then stinging as pink bumps pop out, then intense itching. I carefully resist scratching, or only scratch through clothing, but the bump seem easily inclined to turn into open sores and scab, although the scabs are small. My eyes are also itchier and blearier than before this all began; several times a day, I'll use a fingernail to gently scrape the crud from my eyelid edges. As for treatment, I've gradually developed a regimen that seems to help keep things bearable, although the itching woke me up in the middle of the night the other night; and if I neglect things, I'm quickly thrown back into torment. The regimen is: I scrub all areas with a solution of 2 parts witch hazel to one part 90% rubbing alcohol, trying to remove all grime; then a cortisone cream on particularly itchy areas; then slather on antibiotic cream – the latter really seems to help the healing, and this is one reason I wonder about the skin ecology – that if demodex are involved, maybe other kinds of bacteria also play a role, either in feeding them or simply in the inflammation. I do all that at least twice a day, morning and night, and it usually gives me at least 3 hours of relief from the itching; plus I also use Differin in certain areas to help things heal; and I also apply opthalmic ointment to my eyelid edges every night. And of course I wash my sheets, towels, and clothing two or three times more often than I used to, using tea tree oil in the wash and also in my shampoo and soap; and I only wear the softest cotton shirts, inside out since the seams feel torturously scratchy. If I do all this religiously, I can usually still function; but I estimate it's sucks up nearly 4 or 5 hours per day, and I still feel at least semi-tormented much of the time.

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Wow, you have a serious symptoms. So very sorry.
Have you ruled out having various forms of eczema. Yes I have GD, but also have severe Allergic Contact Dermatitis, ACD as well as a few cases of Perioral Eczema. Why assume you only are dealing with GD? Eczema is an autoimmune disease and most of us with autoimmune diseases collect more as we age.
Have you been tested for ACD with the 5 Day Extended Patch Test? You need to rule out other forms of eczema in addition to GD. For example I am severely allergic to Mercaptobenzothiazole, MBT. This is an element if rubber, just like latex is from rubber. MBT is used to blend materials and memory foam is one, as well as nylon, poly/cotton, rayon and so on. The pillow you used could have had memory foam or blended covering materials you are allergic to. Even if you cover all with a 100% cotton towel elements off gas into you via your skin which is not an occlusive barrier. I also learned I am allergic to several adhesives which are used in fire retardants, spray starch, wrinkle free material processing, Scotch Guard and more. Any of these elements could have been used in this pillow. These materials could be used in a million products you contact or off gas into you.
Medicare as well as most insurance policies cover this expense test which is usually about $1,500. I have been tested twice. The first time I learned of only 6 allergies our of 78 sites, but avoiding these stopped my symptoms. 5 years later had this test again because of issues and learned of severe acrylic allergy and have eliminated those contacts. We collect allergens as we age. I didn't have these allergies in my youth. Each subsequent contact lessons our reaction time and increases the severity of reaction.
Controlling ACD has no relation to GD, yet you are atypical with the locations of some of your rashed up area so am suspecting other types of eczema, like ACD in combination with GD.
Also do not discount the benefit of an anti-inflammation diet. As a last resort and only reluctantly now follow the William Crook, MD, "The Yeast Connection Handbook". This dropped my histamine levels by killing off the yeast in my body. I no longer require a potent corticosteroid shot, Kenalog 40 annually to control the internal all over sensation of burning, stinging and random taser like stinging because of a rigid detox for 3 months and then the maintenance plan. A challenge as this diet means zero processed sugar for life!!!! Yet within 6 months sugar cravings will leave. I will never start up on processed sugar again and be true to this diet now for 1 and 1/2 years.
I am not a medical professional, just an eczema victim who has been forced to understand what has been happening to my body.

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GD follow up. Maybe not GD symptom outbreak at all but reaction to Shingrex. Now 1 month after seriously bad upper back torso outbreak with large plaques of blisters, all plaques gone and itching gone. My GD outbreaks never had these large plaques, simply thousands of papuales; not grouped solid. Stopped cilantro, at beginning of outbreak used the Witch Hazel and then 2 weeks ago added the Hydroxyzine 25 mg twice daily. Unbelievable fast recovery. Normal pattern of GD recurrence is 6 months. Was this GD or a case of shingles. GD and Shingles have similarities. Derm said I had a 100% probability this outbreak was cause by the vaccine. I am not getting 2nd shot of Shingrex.

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@gardeningjunkie

GD follow up. Maybe not GD symptom outbreak at all but reaction to Shingrex. Now 1 month after seriously bad upper back torso outbreak with large plaques of blisters, all plaques gone and itching gone. My GD outbreaks never had these large plaques, simply thousands of papuales; not grouped solid. Stopped cilantro, at beginning of outbreak used the Witch Hazel and then 2 weeks ago added the Hydroxyzine 25 mg twice daily. Unbelievable fast recovery. Normal pattern of GD recurrence is 6 months. Was this GD or a case of shingles. GD and Shingles have similarities. Derm said I had a 100% probability this outbreak was cause by the vaccine. I am not getting 2nd shot of Shingrex.

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Good idea not to get it. I believe that the second one really did it for me. At this point nothing is working. I am now on an anti biotic for 30 days. I still take the cil. smoothies in hopes they will eventually do something. I don't have to tell you how insidious this disease is. I am going away for two months, but am going to write the manufacturers of the vaccine and tell them what they have done to me. I think it is important that we go on record with this.

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Hello. Had a shaved biopsy (3rd biopsy) new lab. I posted my results. Insufficient for Grover’s. Back to square 1. I let derm know I was having some itch near my girly parts-possibly yeast- and asked him if I should use monistat cream. He said he could do better and prescribed me fluconazole 1 pill every 2 weeks for as long as I am taking antibiotic. Took the pill on January 18th. 3 days later I feel great. No girly itch and no itch on my chest my back nor my head. My skin also looks much better. I actually slept through a whole night. It was heaven. Now here is my question. Yes, I had to go to the Derm back in early 2019 when I had my initial break out and I was given like all of us are given antibiotics to help clear us up. I have been on antibiotics for a total of nine months. Could these antibiotics be killing the good bacteria that is on our skin exacerbating our Grovers or whatever skin rashes we have. Any thoughts on this or am I just grasping here. I am always cautiously optimistic when something makes me feel better because I know what works for me this week may not work for me next week.

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I'm curious about this (the effects of antibiotics), too. I have confirmed Grover's and was on antibiotics for more months than I counted, and then the doc took me off without explanation (I called but got no response), and it seems like the rash got worse. I assume they don't want to keep people on antibiotics forever; understandable; but I wish I felt like the docs knew what they were doing and cared enough to explain it to me.

I also want to throw in fwiw to others re- the shingrix vaccine, I developed Grover's before receiving the vaccine, and I've received both parts and did not notice any effects re- the Grover's.

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@impatient

I'm curious about this (the effects of antibiotics), too. I have confirmed Grover's and was on antibiotics for more months than I counted, and then the doc took me off without explanation (I called but got no response), and it seems like the rash got worse. I assume they don't want to keep people on antibiotics forever; understandable; but I wish I felt like the docs knew what they were doing and cared enough to explain it to me.

I also want to throw in fwiw to others re- the shingrix vaccine, I developed Grover's before receiving the vaccine, and I've received both parts and did not notice any effects re- the Grover's.

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Pretty sure the vaccine was responsible for my GD.

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