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?

@help4meandu

I should definitely join the support group for Grovers. I continue to be plagued with red rashes and itchy lesions that erupt spontaneously despite using various steroid creams. It is a mystery what triggers them but suspect certain fabrics and allergies probably to my cats and cleaning products. Still not convinced that fleas or dust mites are not to blame.
Thanks to all of you for sharing your experiences.

Jump to this post

Until you get the 5 Day Extended Patch test for Allergic Contact Dermatitis, ACD, you will only be guessing at your contact triggers.

REPLY

Thank you. I will ask the dermatologist.

REPLY
@help4meandu

Thank you. I will ask the dermatologist.

Jump to this post

Yes ask your dermatologist or allergist, but do your homework first on this test. Those of us with the most success in controlling our eczema have put the work into research. Only specially licensed derms and allergists can administer this test. If your derm isn't licensed for this test ask for a referral. Google True Test for Allergic Contact Dermatitis, this a common test and a highly regarded one. If your derm isn't giving you ideas besides prescribing steroids to control your eczema search out other derms. I bet if a survey was taken of how many of us needed to go to multiple derms to help us figure out our best treatment that most of us have been to over 5. I think I have seen at least 7 and 1 allergist over a 20 year period. My mistake was sticking with my first derm for 10 years who only prescibed steroids and told me to stop washing my hands. I was a trusting fool. That was before the internet. That was before I accepted the fact that I couldn't count on prescriptions and doctors to control it. I didn't even know there were different types of eczema that required different types of treatment. I didn't know a person could have multiple types.

REPLY
@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?

Jump to this post

What is the name of the ointment?
I use triamcinolone and ketoconazole with good success to minimize itching and somewhat clear up the skin. Not a cure but it helps.

REPLY
@jamesbmakos

What is the name of the ointment?
I use triamcinolone and ketoconazole with good success to minimize itching and somewhat clear up the skin. Not a cure but it helps.

Jump to this post

I was prescribed mometasone cream and it’s done nothing to decrease the redness or from the lesions from spreading all over my stomach. Has anyone else had it spread to the stomach and under the breasts? it’s spread so fast in a month. I thought Grovers was worse in the winter but the summer has been awful with this outbreak. Has anyone tried other creams or tetracycline to help ?

REPLY

You should read all of gardeningjunkie's posts. She is incredibly knowledgeable. Better than most MD's when it comes to G.D.

REPLY
@sarkei

I was prescribed mometasone cream and it’s done nothing to decrease the redness or from the lesions from spreading all over my stomach. Has anyone else had it spread to the stomach and under the breasts? it’s spread so fast in a month. I thought Grovers was worse in the winter but the summer has been awful with this outbreak. Has anyone tried other creams or tetracycline to help ?

Jump to this post

As nodgabnoj recommended, I would review all the posts here and check out the SkinCell forum too. What you’ll find is the following:
1) Supposedly Grover’s is exacerbated by heat and sweat — except for those that aren’t actually affected
2) Supposedly Grover’s is worse in the winter months but plenty of people have it in Florida and California where real winter is not a factor
3) Supposedly Grover’s is exacerbated by dry skin — except when it isn’t

Grover’s can be transient, recurrent, or persistent. Some people have been cured, or sent into permanent remission, (however you want to phrase it) by using a DMSA under doctor supervision, eating cilantro, avoiding gluten, avoiding grains, avoiding sulfites, taking vitamin A and D, etc.

I’m less inclined to think of this as a disease and more as a symptom caused by some environmental toxins (which, of course, are everywhere) and the body’s difficulty in addressing it.

In the West we are conditioned to think a) you get something and b) you then get a prescription to make it go away or manage it. And while that is sometimes true, I’d suggest it makes sense to look at things holistically and take a systemic approach.

1) What are your vitamin levels? What are your heavy metals levels? Do you have elevated inflammatory markers in your blood?
2) What is your diet and is it anti or pro inflammatory (sadly, there is no middle ground)?
3) What is your stress level and how much sleep to you get?
4) Do you come into contact with toxic substances through work?

Addressing all of the above will make you healthier but is no guarantee of a cure. The only thing I’ve seen, though, is that the long term solutions have only occasionally come from topicals or drugs. If it isn’t transient, systemic changes in lifestyle are likely the best way to address it and all of the anecdotal evidence points to that.

Granted, that is just my two cents.

REPLY
@justmemyself

As nodgabnoj recommended, I would review all the posts here and check out the SkinCell forum too. What you’ll find is the following:
1) Supposedly Grover’s is exacerbated by heat and sweat — except for those that aren’t actually affected
2) Supposedly Grover’s is worse in the winter months but plenty of people have it in Florida and California where real winter is not a factor
3) Supposedly Grover’s is exacerbated by dry skin — except when it isn’t

Grover’s can be transient, recurrent, or persistent. Some people have been cured, or sent into permanent remission, (however you want to phrase it) by using a DMSA under doctor supervision, eating cilantro, avoiding gluten, avoiding grains, avoiding sulfites, taking vitamin A and D, etc.

I’m less inclined to think of this as a disease and more as a symptom caused by some environmental toxins (which, of course, are everywhere) and the body’s difficulty in addressing it.

In the West we are conditioned to think a) you get something and b) you then get a prescription to make it go away or manage it. And while that is sometimes true, I’d suggest it makes sense to look at things holistically and take a systemic approach.

1) What are your vitamin levels? What are your heavy metals levels? Do you have elevated inflammatory markers in your blood?
2) What is your diet and is it anti or pro inflammatory (sadly, there is no middle ground)?
3) What is your stress level and how much sleep to you get?
4) Do you come into contact with toxic substances through work?

Addressing all of the above will make you healthier but is no guarantee of a cure. The only thing I’ve seen, though, is that the long term solutions have only occasionally come from topicals or drugs. If it isn’t transient, systemic changes in lifestyle are likely the best way to address it and all of the anecdotal evidence points to that.

Granted, that is just my two cents.

Jump to this post

Wow! Very informative thank you. I have suffered from stress and anxiety most of my life and of course the covid situation exacerbates everything. Just had blood work done. Will ask dr for report. Take lot of supplements and medications but should work on diet. I did notice it’s worse in winter for some reason yet heat of summer supposedly contributes. Very disheartening.

REPLY

I also had light therapy for a year 2 and 3 times a week and that really helped me in addition to the creams

REPLY
@justmemyself

As nodgabnoj recommended, I would review all the posts here and check out the SkinCell forum too. What you’ll find is the following:
1) Supposedly Grover’s is exacerbated by heat and sweat — except for those that aren’t actually affected
2) Supposedly Grover’s is worse in the winter months but plenty of people have it in Florida and California where real winter is not a factor
3) Supposedly Grover’s is exacerbated by dry skin — except when it isn’t

Grover’s can be transient, recurrent, or persistent. Some people have been cured, or sent into permanent remission, (however you want to phrase it) by using a DMSA under doctor supervision, eating cilantro, avoiding gluten, avoiding grains, avoiding sulfites, taking vitamin A and D, etc.

I’m less inclined to think of this as a disease and more as a symptom caused by some environmental toxins (which, of course, are everywhere) and the body’s difficulty in addressing it.

In the West we are conditioned to think a) you get something and b) you then get a prescription to make it go away or manage it. And while that is sometimes true, I’d suggest it makes sense to look at things holistically and take a systemic approach.

1) What are your vitamin levels? What are your heavy metals levels? Do you have elevated inflammatory markers in your blood?
2) What is your diet and is it anti or pro inflammatory (sadly, there is no middle ground)?
3) What is your stress level and how much sleep to you get?
4) Do you come into contact with toxic substances through work?

Addressing all of the above will make you healthier but is no guarantee of a cure. The only thing I’ve seen, though, is that the long term solutions have only occasionally come from topicals or drugs. If it isn’t transient, systemic changes in lifestyle are likely the best way to address it and all of the anecdotal evidence points to that.

Granted, that is just my two cents.

Jump to this post

@justmemyself I loved your response above. Especially the supposedly…except. In the end it all boils down to addressing the source, not just the symptoms. I'm a cilantro winner! I beat it! Still have that cilantro smoothie occasionally.

REPLY
@justmemyself

As nodgabnoj recommended, I would review all the posts here and check out the SkinCell forum too. What you’ll find is the following:
1) Supposedly Grover’s is exacerbated by heat and sweat — except for those that aren’t actually affected
2) Supposedly Grover’s is worse in the winter months but plenty of people have it in Florida and California where real winter is not a factor
3) Supposedly Grover’s is exacerbated by dry skin — except when it isn’t

Grover’s can be transient, recurrent, or persistent. Some people have been cured, or sent into permanent remission, (however you want to phrase it) by using a DMSA under doctor supervision, eating cilantro, avoiding gluten, avoiding grains, avoiding sulfites, taking vitamin A and D, etc.

I’m less inclined to think of this as a disease and more as a symptom caused by some environmental toxins (which, of course, are everywhere) and the body’s difficulty in addressing it.

In the West we are conditioned to think a) you get something and b) you then get a prescription to make it go away or manage it. And while that is sometimes true, I’d suggest it makes sense to look at things holistically and take a systemic approach.

1) What are your vitamin levels? What are your heavy metals levels? Do you have elevated inflammatory markers in your blood?
2) What is your diet and is it anti or pro inflammatory (sadly, there is no middle ground)?
3) What is your stress level and how much sleep to you get?
4) Do you come into contact with toxic substances through work?

Addressing all of the above will make you healthier but is no guarantee of a cure. The only thing I’ve seen, though, is that the long term solutions have only occasionally come from topicals or drugs. If it isn’t transient, systemic changes in lifestyle are likely the best way to address it and all of the anecdotal evidence points to that.

Granted, that is just my two cents.

Jump to this post

Thank you for this, I’m going to try cilantro and take a look at my supplements. I read that sun damaged skin could also trigger GD but I’m trying to figure out why I never had an outbreak like I do now. No issues last summer or over the winter except for two years ago. I take viatimin A but I will look into viatimin D. It appears sun makes it worse for me. Any suggestions for creams and what are the best anti inflammatory vegetables to eat?

REPLY
@nodgabnoj

Thanks. I've been taking the cilantro for at least 45 days and will continue to do so.

Jump to this post

What type of cilantro do you take? Supplements or cilantro shakes? Do you know of any cilantro shake recipes

REPLY
Please sign in or register to post a reply.