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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@pen2015

I am newly diagnosed with Grover’s. Have had ongoing spreading rash since May. Started on my sides, then moved to entire back and chest. Now has continued to spread down arms and sides of butt, to back of legs and front of shins.

Two rounds of oral steroids did not help. Was using clobetasol solution on scalp, ( it was there too, but that part is much better) then triamcinolone ointment and clobetasol cream. Nothing helps very much.

Now I’m just using a cream lotion that I found online, so I can get steroids out of my system. Also, Dr started me on soriatane 10 mg/day. Just keeps spreading.. it is awful.

I did make a cilantro smoothie this morning🤮I don’t like it, but I’m gonna do it.

I pray for everyone going through this🙏🏻

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I was diagnosed in January after biopsies. Started cilantro smoothies daily in February. Rash free in 6 days and now off smoothies. I still mix one up once a week or so just because they are good for your digestive system. Doctors have no idea how to handle Grover’s.

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@gardeningjunkie

Your post is painful to read because myself and the others on this site feel your pain and misery. How many of us are there? Your case sounds extremely severe. My rash was more traditional- back of upper and lower torso and front and it was miserable enough. Yes cilantro is a "miracle treatment" for me, I will drink it daily for life. Like you steroids did nothing. Please keep up with the cilantro for at least a month since your symptoms are severe, you are in a full blow and active breakout and may take longer to respond. For me I was just beginning a recurrence, only a month into it so when Kimass1 shared about the success many have with cilantro, that is probably one reason why I felt my breakout stalling within a few weeks. I never tried Soriatane and read it is Vitamin A used to treat psoriasis, but wow the side effects can be difficult. I do think that Calciptriene Cream did help some, it is a Vitamin D topical also used for psoriosis (which I don't have). Yet until cilantro no big difference in anything I tried.
Would you mind sharing how you know you have GD? Did you have a biopsy?
I also would like to know if you have other forms of eczema? I have 3 and to begin with my dermatologists simply assumed my rash was my Allergic Contact Dermatitis, ACD. My point being this, could you have other forms of eczema? Have you been tested for the allergic form, ACD?

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Yes, I had a biopsy 3 weeks ago. Path report says only “ Acantholytic dermatitis consistent with Grovers’s disease”.

I have never had skin problems before this. I also have Crohn’s, so the Drs all assumed I was having a reaction to the Remicade infusions that I was on, so I stopped those. Rash continued to spread, so that’s when I had biopsy done.

I am drinking a cilantro smoothie right now😊 Thanks to reading all of the wonderful posts you guys have on here. So glad I found this site.

I think I do need to be checked into further. My dermatologist just pretty much said “ You have Grover’s disease and it is really gonna just suck for you, you just drew a really unlucky straw”. Literally the words out of her mouth. I had never heard of it before and I am an Ultrasound Tech, in Medical field for 29 years.

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@mariannj

@pen2015 So very sorry to hear about your situation. Hopefully you will respond to the cilantro smoothies. Give it two months. You have a lot to deal with. Try adding chlorella supplements, in addition to your smoothie. (Purchase on internet) They supposed work well together, both helping with metal detox. I have done both since I began because I was super miserable and was willing to go full blown attack mode. I hate the taste of cilantro but manage to make it palatable with frozen peaches, banana and blueberries, blended with almond milk, sometimes chocolate, sometimes coconut, but always with almond cashew mild, all unsweetened. I buy bags of frozen fruit at Costco. I also freeze the cilantro into single mix portions, stems and all. Makes for an easy breakfast. Stay on this site and let us know how you are doing. You have been dealing with this for 4 months. Also read about wearing cotton next to your skin and eliminating certain foods (whole 30 diet). Give it your best and be patient and know that we are here to support you in your battle.

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Thanks so much for the tips! I will order some Chlorella supplements ASAP. You guys are all so sweet to respond with such advice and encouragement.

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@frogger

I was diagnosed in January after biopsies. Started cilantro smoothies daily in February. Rash free in 6 days and now off smoothies. I still mix one up once a week or so just because they are good for your digestive system. Doctors have no idea how to handle Grover’s.

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Wow! Six days. That is awesome! I am trying so hard to stay positive, so it is encouraging to read this. Gonna stick with cilantro for sure. Adding strawberries, bananas and celery, along with a frozen packet of superfood açaí and other green stuff. Lol, I didn’t have my glasses on this morning, so I can’t remember exactly what it was.

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I just looked up Crohn's disease: an inflammatory bowel disease and eczema is an inflammatory disease. I see why your case is complicated. Eczema is an auto-immune disease and many of us with eczema have another auto-immune disease, for example I had leukemia. I thought Crohn's was an auto-immune disease but recent studies are discounting that.
I did forget to mention taking Chlorella like mariannj mentioned. Yet I also take a bunch of other herbals recommended to lower inflammation, like oregano. I either take the oregano oil capsule or add fresh oregano (it grows easily year round in my zone 6) to my cilantro smoothie, yet I had been adding oregano since last October and had a GD re-occurrence start in Feb/March. The oregano I am sure is helping with lowering my yeast and overall inflammation. I know Crohn's is an inflammatory bowel disease and the reason I add oregano is that it helps control the residual hard to kill yeast that lives in the bowels. The yeast is a living entity and the waste it gives off raises our histamine levels. Ever wonder why we get sugar cravings? Your yeast is demanding to be fed.
Going off sugar now for almost a year I never look at a dessert and have my mouth water because the yeast isn't screaming to be fed. We are all here to learn and share ideas and yes try anything that doesn't seem dangerous.
Your doctor brutally shared with you, "GD is really gonna just suck for you". My new young derm took one look at me and almost got giddy! Saying, "Wow, you have GD and I only get to see about 1 case a year". I had never heard of it before. I went to my favorite eczema site, dermnetnz.org and looked at photos and descriptions and don't see how other derms could have misdiagnosed it. Still I am grateful she figured it out in one look. At least being told I had GD gave a name to my tormentor, even after I learned nothing much helped but time. My first outbreak was 1 full year and then for 4 years, 6 months on and 6 months dormant. Also be hopeful as my subsequent outbreaks were not as completely debilitating. My symptoms were about 30% less severe. Awful yes, but better. As I often mention, going to many different dermatologists has made the difference for me as I often learn something new.
I hope you will have success like many of us have had. I wish more GD sufferers knew about this treatment. I wrote up my history using cilantro and included info on accessing our GD blog on the Mayo, plus the earthclinic site Kimass1 turned us on to and gave it to my local derm and will bring this info it to my Western derm when I visit this fall. I want them to mention this to their patients, as I think it helps about 50% of us. My local derm had never heard of cilantro helping.

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@frogger

I was diagnosed in January after biopsies. Started cilantro smoothies daily in February. Rash free in 6 days and now off smoothies. I still mix one up once a week or so just because they are good for your digestive system. Doctors have no idea how to handle Grover’s.

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@frogger, I am so happy that you are off everything and just using cilantro once a week or so. I want to wean myself from the smoothies but I am addicted to them. Love all that fruit and almond milk! Ha ha! I have slowly added some carbs and sugar to my diet but they are not as satisfying as I thought they would be so I still stick pretty well to the whole 30 plan but I don't check everything for additives such as sugar now. I just know what to stay away from. I never realized how much of an inflammatory sugar was till I went off it. I continue to learn from this site and take support from it. I only hope we can help others. I am fortunate that my dermatologist knew immediately what Grover's is. He diagnosed it in about a second. I found out later that he is an expert in rare skin diseases. I told him about the cilantro and will tell him again when I see him this month.

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@pen2015

Wow! Six days. That is awesome! I am trying so hard to stay positive, so it is encouraging to read this. Gonna stick with cilantro for sure. Adding strawberries, bananas and celery, along with a frozen packet of superfood açaí and other green stuff. Lol, I didn’t have my glasses on this morning, so I can’t remember exactly what it was.

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Yes 6 days but kept taking smoothies for 7 months before I stopped everyday use.

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@frogger

Yes 6 days but kept taking smoothies for 7 months before I stopped everyday use.

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I don't have the courage to give up the cilantro till I have zero signs of GD. I still have a very minor, barely noticeable area on lower back torso with a few scabs that simply won't go away with a minor itch from my March GD re-occurrence. It's no big deal and does not affect my life or keep me away from outdoor activities. Landscape projects for me in my yard in record heat and I work till I feel I am starting to get heat stroke and still no GD breakout. Cool down here in the Ozarks Thursday. 92 today, record breaking.

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@mariannj

@frogger, I am so happy that you are off everything and just using cilantro once a week or so. I want to wean myself from the smoothies but I am addicted to them. Love all that fruit and almond milk! Ha ha! I have slowly added some carbs and sugar to my diet but they are not as satisfying as I thought they would be so I still stick pretty well to the whole 30 plan but I don't check everything for additives such as sugar now. I just know what to stay away from. I never realized how much of an inflammatory sugar was till I went off it. I continue to learn from this site and take support from it. I only hope we can help others. I am fortunate that my dermatologist knew immediately what Grover's is. He diagnosed it in about a second. I found out later that he is an expert in rare skin diseases. I told him about the cilantro and will tell him again when I see him this month.

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I wonder if others, like you and me are acquiring a taste for the cilantro smoothie? To those starting to try it, it took me months to begin to tolerate it and about 5 months to find it refreshing. I'm happy with my anti-inflammation diet, but am curious about your whole 30 plan and will research.

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I actually liked it right away. Yogurt and orange juice is very refreshing and cilantro is a minor taste in my concoction.

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