1. < Skin Health

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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nodgabnoj | @nodgabnoj | Apr 19, 2020
In reply to @alyssar "Please help! I am at what appears to be the end of a SEVERE Grover’s Disease..." + (show)
@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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3 replies
nodgabnoj | @nodgabnoj | Apr 19, 2020
In reply to @markopolo "I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked..." + (show)
@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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gardeningjunkie | @gardeningjunkie | Apr 19, 2020
In reply to @nodgabnoj "I'm a bit confused. Why would you stop taking cilantro because you were getting another GD..." + (show)
@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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alyssar | @alyssar | Apr 19, 2020
In reply to @nodgabnoj "This is kind of a suggestion to all those with sleeping problems, take it for what..." + (show)
@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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charles2020 | @charles2020 | Apr 19, 2020
In reply to @aliskahan "Hi @43219876x, welcome to Connect! Grover's disease or Transient Acantholytic Dermatosis, is a rare condition but..." + (show)
@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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1 reply
babbs | @babbs | Apr 19, 2020
In reply to @nodgabnoj "This is kind of a suggestion to all those with sleeping problems, take it for what..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 19, 2020
In reply to @charles2020 "Dear Ali, You seem to be well connected here at this site. May I reach out..." + (show)
@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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sunbird461846 | @sunbird461846 | Apr 19, 2020
In reply to @nodgabnoj "This is kind of a suggestion to all those with sleeping problems, take it for what..." + (show)
@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.

REPLY
1 reply
babbs | @babbs | Apr 19, 2020
In reply to @sunbird461846 "Trazodone is certainly the doctor's choice. Not addictive.Try taking it an hour, before bedtime. Initially, I..." + (show)
@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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