Grover's Disease

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?

@aliskahan

Hi @43219876x, welcome to Connect! Grover’s disease or Transient Acantholytic Dermatosis, is a rare condition but I found that some standard therapies include mild topical steroids, antihistamines, and some oral drugs. You can read more about this here: http://rarediseases.org/rare-diseases/grovers-disease/

I’m also tagging @jbmakos who has reached out about Grover’s in the past; I hope that he will share his experience with you. Have you tried any oral treatments yet?

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Dear Ali,

You seem to be well connected here at this site. May I reach out yo you about TAD to you since I can't find the link to upload an original thread. Where can I start a new thread for discussion here? Thank you.

Charles.

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@nodgabnoj

This is kind of a suggestion to all those with sleeping problems, take it for what it's worth. Having been in the restaurant business for my whole adult life, I have sleep issues. I generally don't fall asleep before 3-30 AM, and would probably lie awake for another hour if I didn't start taking trazedone. For years, I mistakenly drank wine and bourbon to sedate me, and I actually slept very well. About 4 years ago I stopped the alcohol. Best decision ever, BUT, I couldn't fall asleep. I tried everything, but nothing worked until the trazedone. For awhile I would take it with CD oil. Boy did I sleep deeply. I realize that what works for one person may not work for another, and I understand that many people out there are resistant to taking more drugs, for good reason. For myself, as someone who loves his sleep, the benefits of trazedone far out weigh the minor risks involved. Now with GD, I don't think I would ever fall asleep without it.

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My husband and I have been taking 50mg Trazodone for more than 10 years, long before I developed GD. It’s was developed as an antidepressant, but it is sedating and so frequently prescribed in low doses to assist with sleep. We also take CBD oil and I just recently tried CBG oil. Not sure what it is exactly, but also helps with sleep.

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@charles2020

Dear Ali,

You seem to be well connected here at this site. May I reach out yo you about TAD to you since I can't find the link to upload an original thread. Where can I start a new thread for discussion here? Thank you.

Charles.

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Hi @charles2020 welcome to Mayo Clinic Connect. Instructions on How to start a discussion and more can be found in the Get Started on Connect guide here: https://connect.mayoclinic.org/get-started-on-connect/

The Get Started guide is accessible on any page. Just scroll down to the black footer.

Charles, if you have any questions about how to use the site or find discussions and topic, simply send me an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@nodgabnoj

This is kind of a suggestion to all those with sleeping problems, take it for what it's worth. Having been in the restaurant business for my whole adult life, I have sleep issues. I generally don't fall asleep before 3-30 AM, and would probably lie awake for another hour if I didn't start taking trazedone. For years, I mistakenly drank wine and bourbon to sedate me, and I actually slept very well. About 4 years ago I stopped the alcohol. Best decision ever, BUT, I couldn't fall asleep. I tried everything, but nothing worked until the trazedone. For awhile I would take it with CD oil. Boy did I sleep deeply. I realize that what works for one person may not work for another, and I understand that many people out there are resistant to taking more drugs, for good reason. For myself, as someone who loves his sleep, the benefits of trazedone far out weigh the minor risks involved. Now with GD, I don't think I would ever fall asleep without it.

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Trazodone is certainly the doctor's choice. Not addictive.Try taking it an hour, before bedtime. Initially, I felt knocked out, in the A.M., but then my body adjusted.

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@sunbird461846

Trazodone is certainly the doctor's choice. Not addictive.Try taking it an hour, before bedtime. Initially, I felt knocked out, in the A.M., but then my body adjusted.

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Lol, despite having taken it for years, I feel totally zonked within minutes of taking it.

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@mariannj

@mnitchke Because you mentioned "poor personal thoughts" I want to make you aware of the fact that Accutane can have the side effect of suicidal tendencies. I know this because of a personal experience with someone who took it for teen age acne and tried to overdose, unsuccessfully, thank goodness. A great deal of research was done and we found many teenagers were suicidal who were on Accutane and, when stopped, the tendencies disappeared. Everyone is wired differently so this is not true for all but if there is the slightest chance that you can react this way you should know it. We all care about you on this site and want to protect you and befriend you with our knowledge. You can try topical lidocaine, which is an anesthetic, slapping, which is better than scratching and of course the cilantro because you have nothing to lose and it will not harm you.
From the Internet: "While you (or your child) is taking Accutane, watch for any symptoms of depression, like:
Changes in mood and behavior.
Feeling unusually sad, angry, irritable, or aggressive.
Trouble concentrating.
Suicidal thoughts, or thoughts of hurting yourself.
Seeing or hearing things that are not real."
You can research even more. I know some have been helped by Accutane but I do not believe it is worth the risk.

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MariannJ: Thanks for the info about Accutane. Even though I am on a small dose it could explain why I feel down and sometimes my thoughts are not very optimistic. I'll be 76 in a week and I always thought I/we would have a nice 'comfortable' retirement. Well that has been blown out of the water. 1st, my wife was diagnosed with Dementia 8 years ago and has been in a Long Term Care home for 3 years now. I go & feed her lunch everyday, walk her when she can, sit with her etc. Now along comes CoVid-19-total lockdown. Haven't seen her in over a month. Grover's is making me crazy. What a life! As John Lennon said: Life is what happens when you're busy making plans.

Liked by gardeningjunkie

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@markopolo

I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil – Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

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Waiting for my delivery. Thanks again.

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@nodgabnoj

Waiting for my delivery. Thanks again.

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Good luck with it. I’ll be posting information on some other treatments for GD soon.

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@babbs

Thank you for that. I had never heard of these mites. One more avenue of investigation. While tea tree oil may be helpful, one study looked at peppermint oil and salvia oil applied at 100% strength. These essential oils killed mites within 10-15 minutes. Oils feed the mites. The recommended essential oils are applied after alcohol is topically applied. I’m going to try these oils. I am grateful for this new (to me) information.

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Here’s some more info on the Demodex mites, which I believe are related to GD.

An elongated parasite, Demodex "sit with their heads down in the sebum-containing pore utilizing human sebum as a nutritional source. The mites release their waste products, which are composed of free fatty acids, into the pore and surrounding tissues, which are extremely irritating," Draelos explained. "Free fatty acids are released not only by Demodex, but also by bacteria like Proprionibacterium acnes, which is the causative agent in acne. It's interesting that all organisms that utilize sebum as a nutritional source release free fatty acids, and providing a common pathway for inflammation, not only in rosacea, but also in inflammatory acne and in the facial erythema and desquamation associated with seborrheic dermatitis."

Has anyone tried Ivermectin (Soolantra) for their Grover’s Disease? It is getting more popular for treating rosacea as it targets the mites. Some doctors prescribe an antibiotic with Ivermectin to make it work better.

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My skin troubles started with what I self-diagnosed as a demodex infestation – extremely itchy and inflamed eyelids and eyebrows, which began during a stay at an unexpectedly shabby airbnb – which has seemed to slowly but steadily spread downward. The eyebrow thing started over Memorial Day weekend in 2018; by the end of summer, my whole face felt inflamed; by the end of the year I was diagnosed with rosacea and was starting to have an itchy neck with inflamation in the creases; bumps then appeared on my shoulders and chest, and I was diagnosed with GD based on a biopsy; now it's gone down my arms and is worst in my armpits and inside my elbows. The docs seem to see what's going on in different areas as unrelated – rosacea vs. GD vs. something fungal – but to me the spread of one kind of itchiness or another has seemed very steady, continually downward, so I can't help but feel they're related.

Anyway, I've been using soolantra or ivermectin cream on my face for the rosacea for at least a year and a half, and for many months – probably a year or so – also used it on the back of my neck, hoping it would help with the GD there, but I can't say it did. More recently, my insurance stopped covering soolantra or ivermectin cream, and it's terribly expensive, so I stopped using it on my neck at least a month ago, and my neck does not seem any worse.

I also tried a course of oral ivermectin, which is supposed to kill demodex, going to great lengths to sanitize all my clothes, bedding, hairbrush, etc. – but noticed no improvement at all.

The short answer: I've concluded that, at least for me, ivermectin doesn't help the GD much, even if it helps with the rosacea.

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@markopolo

Here’s some more info on the Demodex mites, which I believe are related to GD.

An elongated parasite, Demodex "sit with their heads down in the sebum-containing pore utilizing human sebum as a nutritional source. The mites release their waste products, which are composed of free fatty acids, into the pore and surrounding tissues, which are extremely irritating," Draelos explained. "Free fatty acids are released not only by Demodex, but also by bacteria like Proprionibacterium acnes, which is the causative agent in acne. It's interesting that all organisms that utilize sebum as a nutritional source release free fatty acids, and providing a common pathway for inflammation, not only in rosacea, but also in inflammatory acne and in the facial erythema and desquamation associated with seborrheic dermatitis."

Has anyone tried Ivermectin (Soolantra) for their Grover’s Disease? It is getting more popular for treating rosacea as it targets the mites. Some doctors prescribe an antibiotic with Ivermectin to make it work better.

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I found this article and thought I would share it. I found it interesting and it lists GD as one of the diseases Demodex can cause. Human Demodex Mite: The Versatile Mite of Dermatological Importance

Liked by kimass1, babbs

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@impatient

My skin troubles started with what I self-diagnosed as a demodex infestation – extremely itchy and inflamed eyelids and eyebrows, which began during a stay at an unexpectedly shabby airbnb – which has seemed to slowly but steadily spread downward. The eyebrow thing started over Memorial Day weekend in 2018; by the end of summer, my whole face felt inflamed; by the end of the year I was diagnosed with rosacea and was starting to have an itchy neck with inflamation in the creases; bumps then appeared on my shoulders and chest, and I was diagnosed with GD based on a biopsy; now it's gone down my arms and is worst in my armpits and inside my elbows. The docs seem to see what's going on in different areas as unrelated – rosacea vs. GD vs. something fungal – but to me the spread of one kind of itchiness or another has seemed very steady, continually downward, so I can't help but feel they're related.

Anyway, I've been using soolantra or ivermectin cream on my face for the rosacea for at least a year and a half, and for many months – probably a year or so – also used it on the back of my neck, hoping it would help with the GD there, but I can't say it did. More recently, my insurance stopped covering soolantra or ivermectin cream, and it's terribly expensive, so I stopped using it on my neck at least a month ago, and my neck does not seem any worse.

I also tried a course of oral ivermectin, which is supposed to kill demodex, going to great lengths to sanitize all my clothes, bedding, hairbrush, etc. – but noticed no improvement at all.

The short answer: I've concluded that, at least for me, ivermectin doesn't help the GD much, even if it helps with the rosacea.

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My fear is the your dermatologist may be grasping at straws. I had 4 separate/different diagnosis before they finally got it right. Please seek a second or third opinion. I have zero faith in the medical community. They only guess and throw medicine at you until something works. Be your own best advocate. There is another person on the Grover's Disease Facebook Page who was diagnosed with Grover's and it turns out her problem was scabies! I was able to find the Cilantro cure by doing my own research over a year ago and shared the info here so others could benefit. NO other Dr is suggesting it and most poo poo it! Even though it works on a great majority of sufferers.

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@alyssar

I found this article and thought I would share it. I found it interesting and it lists GD as one of the diseases Demodex can cause. Human Demodex Mite: The Versatile Mite of Dermatological Importance

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Hi @alyssar, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– Human Demodex Mite: The Versatile Mite of Dermatological Importance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884930/#!po=0.877193

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@colleenyoung

Hi @alyssar, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– Human Demodex Mite: The Versatile Mite of Dermatological Importance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884930/#!po=0.877193

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Ok thank you

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@kimass1

My fear is the your dermatologist may be grasping at straws. I had 4 separate/different diagnosis before they finally got it right. Please seek a second or third opinion. I have zero faith in the medical community. They only guess and throw medicine at you until something works. Be your own best advocate. There is another person on the Grover's Disease Facebook Page who was diagnosed with Grover's and it turns out her problem was scabies! I was able to find the Cilantro cure by doing my own research over a year ago and shared the info here so others could benefit. NO other Dr is suggesting it and most poo poo it! Even though it works on a great majority of sufferers.

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kimass1 is completely correct. It took me over a year with several demrs to get the right diagnosis- went to a new derm who took one look and identified it. Other's treated it as a different form of eczema to no avail. That said, no px ever made a noticeable or any difference. All the px did was give me hope. kimass1 is my angel. Without her on this site I would have not been aware of cilantro as a treatment which would help me and about 50% of others . I wrote this up and took it to both of my derms when cleared up and they seemed not to have any interest in my results or how it had helped others.

Liked by MariannJ

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