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?

@mnitchke

@gardeningjunkie-you say(said)"Because of this site we have read that cilantro works as a heavy metal detox ". I have posted on this blog but my posts didn't appear until much later. Here's my point, big or nothing at all: Everyone here in the 'Cilantro Club' has been experiencing results, mostly good, or even mildly good, which as a sufferer from GD is a god send. I'm one too. I'm writing this during the CoVid-19 Lockdown so access to fruits, Veg's etc. is not always easy. On to my query: Has anyone here ever thought that maybe, just maybe, the 'cause' of their GD could be related to a heavy metal presence in their body/blood? And maybe, just maybe since Cilantro is known to help remove toxic heavy metals, that is the reason for the vast improvements people are experiencing? I had a Total Knee Replacement done in 2018, and in 2019 I developed a rash at the site of the operated knee. Recently I opted to have a metal sensitivity test done and found that my Aluminum level was way high, over the High level even. To-date there is no explanation as to how and why. BUT in Jan. 2020 I started a new rash, thinking it was related to the other, but it turned out to be (via Biopsy) Grover's. I still don't know how my Alum. level came to be so high so I am about to 'gasp' try the Cilantro route and if it works and IF my Alum. levels also decline, then there could be a definite co-relation between GD & Heavy Metals. Just sayin'. My GD is restrictive, and intereferes with my daily life and activities, sleep especially as I now am lucky to get 3-4 hours of sleep a night. Itch/Scratch etc.

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Lots of info about GD tied to heavy metals, Google it. You have limited options because of implant but it sure couldn't hurt you to try the cilantro. My only negative side effect after consuming 1/2 large bunch daily for 9 months was some darkening of pigment spots on my cheeks. Reading on the internet this can happen when consuming too much cilantro. I gave it up at that time because I thought I was getting another GD recurrence so why take it , but turned out my rash was a reaction to the Shingrex vaccine. Once this reaction cleared up in about 2 months I didn't go back on cilantro. Still in remission and am gardening about 5 hours a day right now, but temps have been comfortable so not sweating yet. I'm realistic, I know it will return someday but it's been a year now.

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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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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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@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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I found the latest info on GD from Medscape dated Saturday 18 April 2020 to be very informative for all my fellow sufferers.
Google – http://www.medscape.com/answers/1124347/-114031 and be sure to read all the linked articles. Chin up everyone.

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@gardeningjunkie

Lots of info about GD tied to heavy metals, Google it. You have limited options because of implant but it sure couldn't hurt you to try the cilantro. My only negative side effect after consuming 1/2 large bunch daily for 9 months was some darkening of pigment spots on my cheeks. Reading on the internet this can happen when consuming too much cilantro. I gave it up at that time because I thought I was getting another GD recurrence so why take it , but turned out my rash was a reaction to the Shingrex vaccine. Once this reaction cleared up in about 2 months I didn't go back on cilantro. Still in remission and am gardening about 5 hours a day right now, but temps have been comfortable so not sweating yet. I'm realistic, I know it will return someday but it's been a year now.

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I'm a bit confused. Why would you stop taking cilantro because you were getting another GD outbreak? I thought that was the whole point of taking it in the first place. So at what point do you think the cilantro should be taken ?

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@alyssar

Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

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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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@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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Thanks for the suggestion. Going to try it.

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@nodgabnoj

I'm a bit confused. Why would you stop taking cilantro because you were getting another GD outbreak? I thought that was the whole point of taking it in the first place. So at what point do you think the cilantro should be taken ?

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I wish I could give you some guidelines. So much is speculative and very personal. For me starting a definite new breakout at my predicable time- 6 months of clear preceding it, the cilantro helped with weeks, not so the rash to begin with but no new papuales and the itching was much less so I guess I am one of the luck ones. I had a reason to keep up the cilantro.
I went off because II figured it wasn't helping anymore. I had been clear for months after drinking cilantro daily and afraid to stop it, but then I got slammed. I figured it wasn't working so why drink it? This happens to me with some medicines, they work for years and then stop working so I figured this was another example. Turns out I was probably mistaken about cause of rash, it wasn't GD but a case of shingles triggered by adult preventative shingles vaccine. After 2 months the shingles rash (reaction to vaccine) was clear and figured why go back on cilantro, perhaps I was detoxed and didn't need it? Frogger a blogger on this site for who cilantro worked for went off of it a few months after he cleared up and I don't believe he has had a new recurrence. Follow his posts as he tried this about the same time I did when Kimass1 brought this to our attention. She had been blogging on an earthclinic site and learned about it. She references this site and I read the entire blog from inception, very helpful posts. I am still in remission today and have been off cilantro since around Dec 19. If I do get a new breakout maybe that means heavy metals have built up in my body again and will follow the cilantro detox again.

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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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Thank you for the insight I do have some prescription sleep aid and ur correct wouldn’t get through GD flare without it!

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@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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