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?

I saw my dermatologist who was very interested in the cilantro treatment for Grover's that's helping many of us. Frogger, MarianneJ and Kim's history on cilantro I included with mine, along with copies of the earthclinic Grover's Miracle Cure blogging site and this site. She has only a few Grover's patients a year and seems interested in cluing them in to this treatment. I'm still symtom free and exposing myself to heat and sweat.

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I’m having some rash symptoms after running, mowing lawn etc every week in Texas heat BUT no itching. Cilantro is a godsend. I’m not going to let the Grover’s win.

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@grandturk67

hello how do you start a new post on here i dont see an option

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@grandturk67, I am a volunteer mentor, and I just came across your post about starting a new discussion. @gardeningjunkie, Thank you for being on top of sharing your how to begin a new discussion.
I would like to jump in here. I want to share the following link to Connect Pages > About Connect: Who, What & Why About Connect
You will find step by step instructions under How to Get Started.
https://connect.mayoclinic.org/page/about-connect/tab/aboutconnect/
Let me know if you need help.

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@frogger

I’m having some rash symptoms after running, mowing lawn etc every week in Texas heat BUT no itching. Cilantro is a godsend. I’m not going to let the Grover’s win.

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Frogger I am bummed that your rash symptoms are beginning. Have you thought of adding the amount of cilantro you intake? I 'm pushing my luck and gardening until 11:00 and do get sweaty and heated. I am so loving my freedom from Grover's symptoms. Yet so far no issues and of course still drinking a giant cilantro smoothie, but may skip one day a week. Next season plan to add many plants to my herb garden as others say it does well here in the Ozarks.
I have made a point to give my skin a break every other day staying out of the heat hoping that gives my skin time to heal any damage I have inflicted.Have you been out in the heat daily? I know Texas heat; when first married and my husband was in the Air Force we lived in San Antonio and Lubbock. My son and grand-kids live in Dallas area, Argyle and have to say that summer heat and humidity can drive me inside even when skin is in remission.
My fear is that cilantro is just a temporary fix and can only hold off a new outbreak temporarily.

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Thanks but rash symptoms do not bother me as before. I have no itching and it doesn’t appear as red as in January and February. I may up my cilantro intake and thanks for the concern!

Liked by kimass1

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At least with Grover's most of us can cover up our rash, so that's not the main problem: to be free of itching is a victory.

Liked by kimass1

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Exactly right. I cannot see the rash on my lower back but it would drive me crazy if it itches as it once did.

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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?

Liked by kimass1, MariannJ

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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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I too have found most doctors have never heard of Grover’s. However my dermatologist was quick to run 2 biopsies and give me the diagnosis. But this group is most educated on subject. I told my dermatologist about cilantro and he was surprised at how it worked. But Grover’s has kept me from training and competing (running-Masters Track) since January. I have just resumed running. It was longest hiatus in 43 years. Still taking cilantro and maybe someday may get off the daily routine.

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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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On this site we totally understand your misery and search for treatments or lifestyle changes to help.
As you have read cilantro, which I learned about on this site from a fellow blogger, thanks to Kimass1 and her Wed Feb 27th post, has not only helped me, but cleared me of 99% of my symptoms and the only treatment that helped. It sounds like you are experiencing your initial breakout. Normally the first breakout is the most severe and the longest lasting. I have read from one person who was dealing with a 6 year initial breakout, but I followed a more normal course of a 1 year break out. I was beginning year 4 with Grover's and a new breakout period so my rash symptoms were in the early stage when I started the daily cilantro smoothie. I noticed my breakout stalled in less than 2 weeks and I never got the extreme pain or any pain and only a mild initial itching that was gone within a month. Still the scabs held on for months. It began in the lower back and never advanced to the upper back and only had a few on my belly. I have never had it on my arms or legs, as this advanced form seems to be less common. Since you are severely broken out and in the initial outbreak stage it make take longer to notice any improvement, so don't despair and keep this cilantro smoothie going for at least 3 months. Now 5 months later since drinking my daily smoothie I still have a handful of scabs that fall off only to return, but no pain or itching. Most scab scars have faded. You read that most of use fresh, but frozen also has helped some. Tips on how to keep it a week are in our blogs.
You mentioned collagen, ours has separated and no longer holds our skin cells together in our Grover's regions. I believe this cellular restructuring is permanent and we no longer have our skin protecting us like it used to. Cilantro will be a temporary fix I believe, as our skin structural damage is permanent. That's why I plan to drink this daily for life. Right now you are trying any treatment you can, so it will be hard to tell if the collagen treatment is helping versus other treatments like cilantro, but you are doing what I have done and others desperately grasping for any help trying to get our normal lifestyle back and most importantly be pain and itch free. While your doctors were treating it incorrectly as heat rash, mine considered it a symptom of my initial form of eczema Allergic Contact Dermatitis, ACD. I would suggest the 5 Day Extended Patch Test for ACD, because I have both forms of eczema and they can have overlapping symptoms and you could too, but you can't have this 5 day test until your back is clear as the patches cover your entire back torso and need clear skin for a reading.
Most of us with Grover's were leading active outdoor lives like you. Have you gone to the dermnetnz.org site I have recommended and looked at Grover's site? It has a good simple list of supposed causes, for Grover's sun exposure is one, and also this site has very good photos. Even though my GD case is classic, my only biopsy came out negative, the derm said it is because the GD must be active to show up positive on the biopsy and when biopsied my breakout was beginning to clear up. They say it is not genetic, but my sister who was always told she had heat rash got a biopsy after I told her that I finally got a name for my torso rash other than ACD, she got biopsied and it was positive. Her symptoms have always been minor and only around her lower bra area. Even her itching is mild and never painful. My symptoms have been severe and like you restricted my outdoor activities and sleep.
Others like myself are sharing info about our cilantro treatment trying to help others. My next step will be to go to dermnetnz.org, contact them into looking into adding this information to their website.
I'm hoping cilantro helps you, seems it helps about 50% of us.

Liked by kimass1, MariannJ

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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?

Jump to this post

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.

Liked by MariannJ

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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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