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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@gardeningjunkie

Would you share your GD cycle pattern if you have one? It is interesting to compare what I dealt with compared to others and I'm sure others would be interested.

1st outbreak of GD- 1 year and the most severe
subsequent outbreaks for 4 years 6 months of activity and 6 months of dormancy and although miserable, the misery index was lower then with the first outbreak.
Now free of GD for almost 2 years due to fresh or frozen cilantro

With my ACD I have multiple fabric allergies which are related to rubber. You know you react to latex, an element in rubber, but there are many other rubber related allergens. I am not allergic to latex but to Mercaptobenzothiazole, MBT, an element in rubber used to synthesize materials like spandex, elastic, nylon, poly/cotton, rayon and of course pure rubber contains it although that is not a synthesized material. Safe fabrics for me are not a blend, like 100% cotton, 100% polyester, silk, bamboo and such. Even leather works for me because I am not allergic to tanning ingredients like formaldehyde.

I do wonder if your other locations with eczema symptom's is related to ACD. My 5 Day Extended Patch Test identified my allergens.

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Hello! I have been reading these post for almost one full year. THANK YOU!! They have been so very helpful...more than any doctor. I too have been battling ONE full year of hell with grovers disease. I really wish this website was more user friendly!!

I’ve learned so much so from this group and the Facebook group. I’ll post my experience from start to finish on a new post so it’s not embedded in this thread only.

Take aways, I also have allergies. Only had seasonal allergies before now. After the extended allergy test I learned. I’m allergic to:
1. Carba Mix - pesticides, fungicides, latex, parabens (preservative) plastic...all things containing “emollients” which are typically in topical steroids
2 textile dyes - yes, you read this correct. Clothes are dyed in artificial dyes and then treated with formaldehyde!! So not only is texture important so is the chemicals that are on the clothes. Textile dyes take 6 months to get out of your system FYI. Super fun on top of GD 😂
3. Lidocaine- very interesting as in many lotions

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@ansleyms

Hello! I have been reading these post for almost one full year. THANK YOU!! They have been so very helpful...more than any doctor. I too have been battling ONE full year of hell with grovers disease. I really wish this website was more user friendly!!

I’ve learned so much so from this group and the Facebook group. I’ll post my experience from start to finish on a new post so it’s not embedded in this thread only.

Take aways, I also have allergies. Only had seasonal allergies before now. After the extended allergy test I learned. I’m allergic to:
1. Carba Mix - pesticides, fungicides, latex, parabens (preservative) plastic...all things containing “emollients” which are typically in topical steroids
2 textile dyes - yes, you read this correct. Clothes are dyed in artificial dyes and then treated with formaldehyde!! So not only is texture important so is the chemicals that are on the clothes. Textile dyes take 6 months to get out of your system FYI. Super fun on top of GD 😂
3. Lidocaine- very interesting as in many lotions

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I would appreciate your history like others will, we find strength and learn from each other.
Our history is similar in that until middle age I only had seasonal allergies, severe at times. Now like you I have ACD as well as GD and surprisingly my seasonal allergies are minimal, as if I have outgrown them. I hope your initial breakout period will be coming to an end, as I mentioned mine was for one full year.
I also am wonder if cilantro benefited me and others because we were not in our initial breakout period, but were dealing with our sequential breakout when we started using it. So if cilantro isn't helping you now and you go into remission for months and then GD does it's typical cyclical return you should try the cilantro again.
You also mentioned the time period of 6 months for chemicals and allergens to get out of our systems. I found that especially true with allergic fibers and chemicals, especially the rubber allergy. My foot pads burned for at least 6 months after all allergic contacts were eliminated. Partly because I I didn't think about the rubber residue on allergen free flooring based upon contamination from the soles of shoes and I would walk barefoot on these floors. I am extremely careful, yet if I find myself in a situation I wasn't prepared to protect myself from, for example a doctor's office with blended fiber chairs that contain MBT (my rubber allergy) and my chemical allergies to wrinkle free, scotch guard or fire retardant materials I find I can sit in these chairs without noticing itching. Befoer in 10 minutes I would start itching. I'm not saying these are not off gassing into me or not transferring though my skin, just that it's not immediately noticeable. I still avoid though. My last Patch Test showed a reaction but milder to MBT and to certain adhesives which are in the fabric protectors. My inflammation is down in my body and less reactive because of all my avoidances.

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Do you think stress plays a role in outbreaks? Especially during this pandemic all that ails me seems worse.

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@ansleyms

Hello! I have been reading these post for almost one full year. THANK YOU!! They have been so very helpful...more than any doctor. I too have been battling ONE full year of hell with grovers disease. I really wish this website was more user friendly!!

I’ve learned so much so from this group and the Facebook group. I’ll post my experience from start to finish on a new post so it’s not embedded in this thread only.

Take aways, I also have allergies. Only had seasonal allergies before now. After the extended allergy test I learned. I’m allergic to:
1. Carba Mix - pesticides, fungicides, latex, parabens (preservative) plastic...all things containing “emollients” which are typically in topical steroids
2 textile dyes - yes, you read this correct. Clothes are dyed in artificial dyes and then treated with formaldehyde!! So not only is texture important so is the chemicals that are on the clothes. Textile dyes take 6 months to get out of your system FYI. Super fun on top of GD 😂
3. Lidocaine- very interesting as in many lotions

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@ansleyms Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like you have a lot of information to share and that you get a lot of reading the posts here on Connect.

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@gardeningjunkie

I would appreciate your history like others will, we find strength and learn from each other.
Our history is similar in that until middle age I only had seasonal allergies, severe at times. Now like you I have ACD as well as GD and surprisingly my seasonal allergies are minimal, as if I have outgrown them. I hope your initial breakout period will be coming to an end, as I mentioned mine was for one full year.
I also am wonder if cilantro benefited me and others because we were not in our initial breakout period, but were dealing with our sequential breakout when we started using it. So if cilantro isn't helping you now and you go into remission for months and then GD does it's typical cyclical return you should try the cilantro again.
You also mentioned the time period of 6 months for chemicals and allergens to get out of our systems. I found that especially true with allergic fibers and chemicals, especially the rubber allergy. My foot pads burned for at least 6 months after all allergic contacts were eliminated. Partly because I I didn't think about the rubber residue on allergen free flooring based upon contamination from the soles of shoes and I would walk barefoot on these floors. I am extremely careful, yet if I find myself in a situation I wasn't prepared to protect myself from, for example a doctor's office with blended fiber chairs that contain MBT (my rubber allergy) and my chemical allergies to wrinkle free, scotch guard or fire retardant materials I find I can sit in these chairs without noticing itching. Befoer in 10 minutes I would start itching. I'm not saying these are not off gassing into me or not transferring though my skin, just that it's not immediately noticeable. I still avoid though. My last Patch Test showed a reaction but milder to MBT and to certain adhesives which are in the fabric protectors. My inflammation is down in my body and less reactive because of all my avoidances.

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I seem to always be looking out for research on skin health for GD and other forms of AD. My GD started on areas of sun damaged skin. I have recently found the following studies on the topics of skin integrity, diet, supplements and normal pH. I thought I'd share several with all of you. Two new things I am doing these days are: using Grandpa's Pine Tar Soap, and bathing (very little water and not for long) in water with apple cider vinegar added to bring water to a pH of 5. Both these things have reduced itch. I am also taking Omega 3 supplement in the form of Barlean's - a liquid as I cannot swallow pills. I have also been taking high molecular weight hyaluronic acid 100 mg, collagen, histidine 1 gm, lysine 1 gm, vitamin D 2000 iu, a small multi vitamin and vitamin B12 (I am a pescatarian.) I still use clove oil on spots that occur here and there. (If you think you are beset with mites, clove oil kills mites, kills the itch, and in my case, makes the bumps disappear - but don't let near your face or other sensitive areas.)

DP3, characterized by a high intake of potatoes and starch, seeds and nuts, fruits and eggs, was positively associated with acidic skin pH only before adjusting for potential confounders.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6471406/
Natural skin pH is below 5
https://pubmed.ncbi.nlm.nih.gov/18489300/
DIET AND SKIN BARRIER: THE ROLE OF DIETARY INTERVENTIONS ON SKIN BARRIER FUNCTION
https://www.dpcj.org/index.php/dpc/article/view/dermatol-pract-concept-articleid-dp1101a132
Correlation of clinical features and skin barrier function in adolescent and adult patients with atopic dermatitis
https://pubmed.ncbi.nlm.nih.gov/16796631/

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@help4meandu

Do you think stress plays a role in outbreaks? Especially during this pandemic all that ails me seems worse.

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For me, stress has been inconsistent as a GD trigger. Initially thought that was causing it but after years with it, it doesn’t seem as related as heat, and sugar. I can almost predict an outbreak if I have sugar. I am now using monkfruit sugar and I that doesn’t bother my GD. I have been drinking cilantro smoothies daily for nearly 2 months- I change up the ingredients to keep it interesting. It’s definitely helping!

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Update after 2 months of daily cilantro smoothies- I still have small breakouts mainly on ribs but overall GD is significantly reduced! Here’s my latest Cilantro Smoothie recipe: half bunch frozen cilantro, 1 cup bone broth, 1/2 pomegranate juice, bit of kale, 1/3 banana, 1/2 c frozen wild blueberries, water, chia and flax ground. I added the bone broth thinking the collagen boost might help skin? Not sure it’s doing anything but will keep adding for a while.
I am looking forward to full remission by August hopefully!
Thanks to everyone for your helpful and insightful posts:=))

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@dkdarcik

Update after 2 months of daily cilantro smoothies- I still have small breakouts mainly on ribs but overall GD is significantly reduced! Here’s my latest Cilantro Smoothie recipe: half bunch frozen cilantro, 1 cup bone broth, 1/2 pomegranate juice, bit of kale, 1/3 banana, 1/2 c frozen wild blueberries, water, chia and flax ground. I added the bone broth thinking the collagen boost might help skin? Not sure it’s doing anything but will keep adding for a while.
I am looking forward to full remission by August hopefully!
Thanks to everyone for your helpful and insightful posts:=))

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Congratulations. Keep drinking.

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@dkdarcik

Update after 2 months of daily cilantro smoothies- I still have small breakouts mainly on ribs but overall GD is significantly reduced! Here’s my latest Cilantro Smoothie recipe: half bunch frozen cilantro, 1 cup bone broth, 1/2 pomegranate juice, bit of kale, 1/3 banana, 1/2 c frozen wild blueberries, water, chia and flax ground. I added the bone broth thinking the collagen boost might help skin? Not sure it’s doing anything but will keep adding for a while.
I am looking forward to full remission by August hopefully!
Thanks to everyone for your helpful and insightful posts:=))

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I like your idea of adding the bone broth to your GD tonic smoothie. I started adding collagen powder to my daily smoothie about a year ago. I am no longer put in cilantro but other healthy foods. I can't say if it helps with eczema because I am asymptomatic but it definitely has made my hair and nails grow faster and stronger. I like the Vital Proteins Original Collagen Peptides, unflavored which is a bovine base. It has a neutral taste and some collagen can be very strongly flavored from the beef or fish. With GD our cells have lost the collagen support network in our symptomatic areas which for me are the common GD torso areas. The down side is that it is expensive.

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@gardeningjunkie

I like your idea of adding the bone broth to your GD tonic smoothie. I started adding collagen powder to my daily smoothie about a year ago. I am no longer put in cilantro but other healthy foods. I can't say if it helps with eczema because I am asymptomatic but it definitely has made my hair and nails grow faster and stronger. I like the Vital Proteins Original Collagen Peptides, unflavored which is a bovine base. It has a neutral taste and some collagen can be very strongly flavored from the beef or fish. With GD our cells have lost the collagen support network in our symptomatic areas which for me are the common GD torso areas. The down side is that it is expensive.

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I’d like to know what you think about chlorella. I am thinking of taking it to detox heavy metals as well as any other benefits it may provide. I trust your opinion over most doctors. Much much appreciated. What may be the side effects ?

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