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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@aprilfool

Group, I have just spent the better portion of my day reading this feed from beginning to end. This group seems to be, by far, the most supportive and well-documented of any I've found so far. After three months of intense full body itching and misery, I received my diagnosis of GD a couple of weeks ago via punch biopsy. My primary care doc kept saying "poison ivy" even as it spread from my torso to my arms and legs over several weeks. Two rounds of oral steroids and two creams (that didn't work) later, I landed in a derm office and she couldn't believe how bad it was (and all she looked at was my back). Her expectation based solely on observation was that it would be mastocytosis, so GD was a surprise to both of us. I am 44 and live a very active, healthy lifestyle. I have had to give up nearly all of my outdoor activities, especially running and cycling which I have competed at for nearly 20 years. Ugh...that's the toughest part for me. I have an indoor bike now, but it is not the same. Since diagnosis, I have been on the heavy steroid cream as well as zyrtec and hydroxyzine, which helped with my back, chest, and stomach, but not my arms and legs. I even have some itchy spots on my forehead and chin now. I just bought some cilantro tonight and wish I could fast forward a month to see if it works for me. I also have my follow up from the biopsy tomorrow. I think I may have her look at my arms and legs while I'm there since she focused on my back last time. Should I push for a biopsy of that, too? Also, has anyone experimented with a collagen supplement? I'm seeing a lot of that advertised at Whole Foods and Sprouts as "great for skin." I'm wondering if over time it could help it heal?

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Welcome to this most outstanding group. I was so sleep deprived and miserable with my Grover's when I joined this group that I did everything suggested. My Grover's cleared up in just a matter of WEEKS. I hate the taste of cilantro so I make a VERY LARGE smoothie to mask the taste. Mine includes almond milk, strawberries, banana and blueberries. Almond milk because I am lactose intolerant. However, I took it a step further and went to wearing only pure cotton, sleeping in a cotton man's oversize T-shirt purchased on-line from a site mentioned in an earlier post and sleeping only on pure cotton sheets. I even began the Whole 30 diet and added chlorella for metal purging. I thought I would just stay on that eating plan a month but I lasted 6 months and just recently began introducing some things sporadically, if at all. I never got to the point of having scabs. I simply had a three dimensional intensely itching/painful rash that was diagnosed at first-look by my dermatologist, within a month of my having it. He said it is more common in Arizona because of the dry climate. I told him about the cilantro and he was very receptive. I have been using frozen cilantro the past few months for ease in preparation. I simply divide the bunches into sections and put in separate freezer bags. I do the same with sliced banana and my fruit is mostly frozen. I have even used peaches. Cilantro is also very good for the digestive system and I definitely noticed a change for the better. I tried the supplements when I could not make smoothies and they also held the Grover's at bay but I use fresh whenever I can. I don't want EVER to risk returning to a Grover flare up. We are all rooting for you and hope you will stay true to the cilantro, wear only cotton, and keep us posted.

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Welcome @aprilfool! We do have quite a knowledgeable group here! We were forced to figure this all out on our own since doctors don't seem to know much about this disease or how to treat it. Many people respond extremely well to the Cilantro, but others do not. I am hopeful you are one of the lucky ones. If not, trying the collagen is worth a try. I imagine that anything that is for skin health could not hurt and would be worth a try. I got a subsequent rash that I have been dealing with, and I think I am getting to the bottom of it. For some reason it popped up about the time when I started adding yogurt to my smoothies and did not connect the dots until last week. I stopped using the yogurt in my smoothies and my rash is almost 95% gone now, so I think with the Grover's I also have become either allergic, or less tolerant of some things that never bothered me before. We are here for support, but also welcome input and we LOVE to hear success stories!

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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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Hello - I have been on this site many times discussing my Lymphomatoid Papulosis. At my last Derm visit, I showed the derm the bumpy rash that was in between and under my breasts. I told her it was my LyP. She said "Oh, that's just Grover's disease". I'm like what the heck! 2 rare skin diseases! My LyP has been (fingers crossed) in remission for a bit. The Grover's disease isn't as irritating to me as some other people have. I currently am not putting anything on it. I use Clobetasol for my Lymphomatoid Papulosis. Hopefully, the Grover's will stay under control enough that I am not constantly itchy!

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@mroreo126

Hello - I have been on this site many times discussing my Lymphomatoid Papulosis. At my last Derm visit, I showed the derm the bumpy rash that was in between and under my breasts. I told her it was my LyP. She said "Oh, that's just Grover's disease". I'm like what the heck! 2 rare skin diseases! My LyP has been (fingers crossed) in remission for a bit. The Grover's disease isn't as irritating to me as some other people have. I currently am not putting anything on it. I use Clobetasol for my Lymphomatoid Papulosis. Hopefully, the Grover's will stay under control enough that I am not constantly itchy!

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Welcome and this site may give you relief. Read this discussion from the end of Feb, I believe Feb 27 Kimass1 posted info about Cilantro as an herbal treatment. I have had Grover's for 4 years and others even longer who have benefited from this treatment and none other. It seems to help about 50% of us, including me. Starting this smoothie stopped my recent breakout in it's tracks. Normally a breakout lasts 6 months and then I get a 6 month remission. She references the earthclinic grover's site, go to that site too and study all posts. For some GD is not as severe as others. Your symptoms sound more like sisters, more limited in scope with minor itch and no pain, not as my severe as mine. Hers are not bothersome enough to bother with the daily cilantro smoothie.
You ask why you, but most of us with eczema (GD is a form of eczema) also have other auto-immune diseases and this is common to collect autoimmune diseases. I used to have leukemia. a blood cancer, and on the New Zealand derm site, dermnetnz.org they include lymphoma or other autoimmune disease as a commonality in many sufferers.

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Hello, I’ve had Grover’s (diagnosed) for the past 5 years. I have tried almost every lotion, steroid and “natural” food or supplement I have read about from different forums. I read through this whole strain about Chlorella and cilantro to help slow down or put this terrible disease into remission. I did this “chelation” last time as Chlorella with a cilantro smoothie for a couple weeks and it helped. I’ve had about 4 different breakouts total and then 6-8 months later I get a remission period of a few months. Usually it’s my middle/lower back with it moving around stomach or upper chest.

Just started another breakout after a trip to Hawaii and sweating a lot at work. I started up with the 1/3 bunch cilantro smoothies and Chlorella. I also use a baby cream on the spots with about 15% zinc oxide. In just a couple of days it has decreased and lightened significantly. Here is my concern...I just started reading Andy Cutler’s chelation posts and joined the Facebook talk group. After reading how to chelate and what is good and bad for helping this process, I found an article about Chlorella and cilantro. Unfortunately I can’t post the link. Try and piece this together in your url instead of clicking on a link.

https://
cutlersuccessstories
.weebly.com
/what-not-to-do
.html#cilantrochlorella

Are we just lucky to not have these symptoms? I am very concerned about continuing the smoothies and Chlorella after reading this article and some of the talk forums. I do think mercury is one of my causes for the Grover’s. That and bad sunburns as a kid/young adult.

I am going to continue looking into the Cutler chelation method and possibly try that over the smoothies.

Thought?

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@buckeyegreg

Hello, I’ve had Grover’s (diagnosed) for the past 5 years. I have tried almost every lotion, steroid and “natural” food or supplement I have read about from different forums. I read through this whole strain about Chlorella and cilantro to help slow down or put this terrible disease into remission. I did this “chelation” last time as Chlorella with a cilantro smoothie for a couple weeks and it helped. I’ve had about 4 different breakouts total and then 6-8 months later I get a remission period of a few months. Usually it’s my middle/lower back with it moving around stomach or upper chest.

Just started another breakout after a trip to Hawaii and sweating a lot at work. I started up with the 1/3 bunch cilantro smoothies and Chlorella. I also use a baby cream on the spots with about 15% zinc oxide. In just a couple of days it has decreased and lightened significantly. Here is my concern...I just started reading Andy Cutler’s chelation posts and joined the Facebook talk group. After reading how to chelate and what is good and bad for helping this process, I found an article about Chlorella and cilantro. Unfortunately I can’t post the link. Try and piece this together in your url instead of clicking on a link.

https://
cutlersuccessstories
.weebly.com
/what-not-to-do
.html#cilantrochlorella

Are we just lucky to not have these symptoms? I am very concerned about continuing the smoothies and Chlorella after reading this article and some of the talk forums. I do think mercury is one of my causes for the Grover’s. That and bad sunburns as a kid/young adult.

I am going to continue looking into the Cutler chelation method and possibly try that over the smoothies.

Thought?

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Think like anything we are putting our bodies at an unusual/not normal amount, you should probably speak with your doctor. Also read the stories, sound like allergy symptoms. If you could be allergic, don’t do it. Just listen to your body. If it’s reacts negatively, stop. I notice a difference taking cilantro. No side affects liver numbers were a little above range so watching that but otherwise no issue so far So staying with it. At least for now

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@buckeyegreg

Hello, I’ve had Grover’s (diagnosed) for the past 5 years. I have tried almost every lotion, steroid and “natural” food or supplement I have read about from different forums. I read through this whole strain about Chlorella and cilantro to help slow down or put this terrible disease into remission. I did this “chelation” last time as Chlorella with a cilantro smoothie for a couple weeks and it helped. I’ve had about 4 different breakouts total and then 6-8 months later I get a remission period of a few months. Usually it’s my middle/lower back with it moving around stomach or upper chest.

Just started another breakout after a trip to Hawaii and sweating a lot at work. I started up with the 1/3 bunch cilantro smoothies and Chlorella. I also use a baby cream on the spots with about 15% zinc oxide. In just a couple of days it has decreased and lightened significantly. Here is my concern...I just started reading Andy Cutler’s chelation posts and joined the Facebook talk group. After reading how to chelate and what is good and bad for helping this process, I found an article about Chlorella and cilantro. Unfortunately I can’t post the link. Try and piece this together in your url instead of clicking on a link.

https://
cutlersuccessstories
.weebly.com
/what-not-to-do
.html#cilantrochlorella

Are we just lucky to not have these symptoms? I am very concerned about continuing the smoothies and Chlorella after reading this article and some of the talk forums. I do think mercury is one of my causes for the Grover’s. That and bad sunburns as a kid/young adult.

I am going to continue looking into the Cutler chelation method and possibly try that over the smoothies.

Thought?

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Hi @buckeyegreg. Thanks for the info. I did not read through the entire site, but did read some of the stories. I believe that every person is different and it seems that the folks on this site were "Chelating" for various health reasons, none of them had Grover's disease (that I read so far) That being said, I have been using cilantro every day for 7 months (Using chlorella about half the time if I remember to add it to my smoothie) and have not felt a single side effect other than NOT having the Grover's Disease symptoms any more. I will continue to review this site and will monitor my health accordingly. I am always skeptical when someone is selling something and putting down other methods. The evidence will need to be compelling in order for me to give up the cilantro.

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buckeyegreg- I do know cilantro and sometimes adding chlorella has stopped my GD in it's tracks. I have discussed my daily intake, about 1/2 a bunch of stems and pieces and with my dermatologist and it has not raised any red flags as far as ingesting too much. I have been on this smoothie program for 4 months and plan to stay on it indefinitely as so far zero negative side effects.
Like others mentioned I have learned to be skeptical of any method that comes at a cost. It's so easy to become a victim when we are suffering and desperate. Early on with eczema (I have 3 types) I became wary having salespeople offering expensive but convincing programs for a "cure" or remission with their treatment. Their sites would have fantastic testimonials. When I researched them most often it was basic vitamins or miracle oil which was basic tea tree oil. I could replicate their prodcut simply and inexpensively. Some wouldn't give info calling it "proprietary" and that very much concerns me not knowing ingredients, no way. Giant red flag. Many of these programs want an automatic monthly deduction from your bank account to join their club. The biggest red flag. The site you are mentioning may be honest and inexpensive for all I know, but be sure to be skeptical. No money for solicitors to make off of this grocery store cilantro plan.
I have been given my active lifestyle back with this simple cilantro plan and because many who go off of the daily cilantro have symptoms return I will stay on it.

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Thanks for all the replies! Appreciate your honesty. Cutler’s chelation is for people with metal toxicity and I’ve heard one reason for Grover’s may be high levels of mercury. I too have done the Chlorella and cilantro smoothies my previous flair up last winter and just started doing it again last Wed due to another flair up. I feel like the spots have lightened and decreased in number, but still there. How long did it take everyone to see mostly clear skin and not feel the itch/burning sensation when you got hot/sweaty. As we all know, cool equals less issues.
I’m an avid golfer and exerciser and the past month has been brutal due to the sweating really irritating the skin. I try Gold Bond powder with zinc oxide and actual zinc oxide paste on the spots. It helps but tired of always plastering my shoulders and back.
Also, does anyone else take vitamins/supplements along with the Chlorella/cilantro?

Thanks for the input!

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@buckeyegreg

Thanks for all the replies! Appreciate your honesty. Cutler’s chelation is for people with metal toxicity and I’ve heard one reason for Grover’s may be high levels of mercury. I too have done the Chlorella and cilantro smoothies my previous flair up last winter and just started doing it again last Wed due to another flair up. I feel like the spots have lightened and decreased in number, but still there. How long did it take everyone to see mostly clear skin and not feel the itch/burning sensation when you got hot/sweaty. As we all know, cool equals less issues.
I’m an avid golfer and exerciser and the past month has been brutal due to the sweating really irritating the skin. I try Gold Bond powder with zinc oxide and actual zinc oxide paste on the spots. It helps but tired of always plastering my shoulders and back.
Also, does anyone else take vitamins/supplements along with the Chlorella/cilantro?

Thanks for the input!

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Hi. Had my first bout with Grovers. I’m at the 6 month point. It’s winding down. In like a lion out like a lamb. I am taking vitamins B,c,d & E. I also shower with tincture of green soap. 3months now on minicycline (3 more weeks for antibiotic) Sarna cream and cetaphil have saved the day. No longer need steroid creams or antihistamines for itch. I cannot take the cilantro/ Chlorella because I have a blood clotting factor and both have vitamin K and can thicken the blood.. (So if anybody is on a blood thinner it could comprise their dosage). I sure do wish I could try the smoothies though. Just a few small spots on chest now. Spent last Sunday at a nascar race and feared a bloom from being in the sun all day, Nothing! Is this remission time or did I nip this disease in the bud. Who knows but for now I’m continuing the vitamins and creams. Staying cool in cotton.

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