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?

@july4

Thank you for post. I am going to try the Cilantro. Nothing else has made a dent into my full blown Grover’s outbreak diagnosed in mid summer. I’m desperate!

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I hope it helps you. Please give it 100% for at least two months. That's how long it took for me to find relief from the red bumps and severe itching. I still have some small hives but they are tolerable. GOOD LUCK!!!

Liked by MariannJ

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@kimass1

Welp, I went off the cilantro and on to MollyB for a little over a week. Big mistake for ME! The itching and bumps started coming back. Now I am playing catch up and back on the cilantro. I am hoping it goes back to the way it was before I went off. Cilantro has been my best remedy so far!

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Good follow up info.

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@july4

Thank you for post. I am going to try the Cilantro. Nothing else has made a dent into my full blown Grover’s outbreak diagnosed in mid summer. I’m desperate!

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My re-occurrence cycle is 6 months symptom free and 6 months symptomatic. No medical prescription has ever made a noticeable difference. I was only a month into a new outbreak, not severe yet when I started the daily fresh cilantro smoothie (I have learned on this site it freezes well so if out of fresh I make up a frozen smoothie). It only took me 2 weeks to notice my emerging outbreak stalled. Yet months for the scabs to start to fall off. I still have a few scabs after 6 months that won't go away, if the scab comes off in the shower it crusts over again, but only extremely minor itching at those sites. The true GD itching stopped in a few weeks after beginning the smoothie and it never got to the pain level. Pain is my most miserable symptom. You have a full blown outbreak and perhaps it will take longer to notice improvement, but as others say keep it up for months before you give up. Please keep us updated.

Liked by MariannJ

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Yes – I admit I have been very reluctant to do cilantro – but I'm throwing in the towel. Some of you know – I've been GD free since February (after 5 or 6 years, lost count, of solid GD – did not come & go on my chest) after going on isotretinoin 40mg pill once per day. I could feel in going away within days. After 5 months of torture with dry skin (lips are the worst) – I went off it and have been completely GD free since 2nd week. It's been two months now since stopping and I'm starting to feel festering (like pin pricks) slight redness and even a couple baby bumps under line (crease) across my chest. I use the treadmill heavy duty walking, but recently I've added running for more cardio (Dr. recommended, COPD, & diaphragm issues), I'm wondering if this is sweating induced? Thiking of going back on iso pills even for a short period as Doc left me plenty. Seeing him again in two weeks.

Any recommendations on a small blender? Will have to do protein and little fruit as I watch every gram of sugar I intake.

Liked by MariannJ

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Our cellular structure in our front and back torso is changed with GD. Our collagen has separated and even when dormant I can feel tiny little bumps under my skin when it is pushed hard.
We all know how it feels when a breakout is beginning, just like you are experiencing. I think cilantro worked faster for me than some because I was only 1 month into a new breakout when I started using it.
I sure hope the cilantro gives you relief. On the earthclinic GD site Kimass1 referred us to, a man had a 6 year outbreak going on- like you never had a break during that time. He tried the cilantro and it worked. He was aggressive and desperate consuming bunches daily, I use about 1/2 a bunch. This worked for him and was ecstatic. Have you read the earthclinic blog?
Like you I limit natural sugar and zero processed (this has definitely helped my inflammation levels). My anti-inflammation diet allows only Stevia, an artificial sweetener. I simply put cilantro, a bit of Stevia, 1/2 cup unsweetened almond milk and 1/2 cup pro-biotic yogurt (I like Stoneyfield whole milk yogurt) and blend. No fruit. I do have a Nutribullet blender, but with my wrist arthritis it's almost impossible and definitely painful to open, so have reverted to my basic Oster blender. It doesn't blend it as clear as the Nutribullet, but it's quick and easy and painless. Also a real flaw with the Nutribullet is cleaning of the gasket which is not meant to be removed. I noticed a sour odor coming from under it and it is almost impossible to remove to clean. With a basic blender cleaning is easy. Either way the cilantro turns to water. Just chug it down and my taste buds now find it acceptable, refreshing.

Liked by MariannJ

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Cilantro smoothie artificial sweetener. Stevia is an artificial sweetener recommenced as the only artificial sweetener allowed on many anti-inflammation diets. Many brands are hard to work with, too strong. Now brand is too strong, just a pinch is enough to sweeten an entire smoothie, too much is bitter. Best I have found that is delicious and easy to use and economical is TRUVIA sold in easy to use packets. Best price at Walmart, but also Amazon and elsewhere. The ratio is truer to natural sugar; just sprinkle a packet over cereal just the same as you would sugar.

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I like my Oster Blender because it has all metal parts, is easy to clean, and had a plastic container so it is light.

Liked by kimass1

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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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@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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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?

Liked by MariannJ

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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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@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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@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🙏🏻

Jump to this post

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.

Liked by MariannJ

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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.

Liked by MariannJ

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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.

Liked by MariannJ

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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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