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?

Hello, I’m new here and was recently diagnosed with grovers through a FaceTime appointment with a dermatologist due to covid-19. I’m a healthy, pregnant, 32 year old female with very fair, generally clear skin. I was staining my porch on three hot days we’ve had recently (I live in NC) and this rash just came from out of no where. It definitely sounds like grovers to me just from my own research, but the dr gave me Triamcinolone and told me it should go away in two weeks. It’s been about a week and it seems to be getting worse. The worst of it is on my stomach but it is all over me (legs, arms, back, chest). I feel hideous and the more research I do, the more it seems like this is not something that is just going to go away. I just need some help and encouragement 😔

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@catlover32

Hello, I’m new here and was recently diagnosed with grovers through a FaceTime appointment with a dermatologist due to covid-19. I’m a healthy, pregnant, 32 year old female with very fair, generally clear skin. I was staining my porch on three hot days we’ve had recently (I live in NC) and this rash just came from out of no where. It definitely sounds like grovers to me just from my own research, but the dr gave me Triamcinolone and told me it should go away in two weeks. It’s been about a week and it seems to be getting worse. The worst of it is on my stomach but it is all over me (legs, arms, back, chest). I feel hideous and the more research I do, the more it seems like this is not something that is just going to go away. I just need some help and encouragement 😔

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@catlover32 If it is Grovers, your best bet would be to start at the beginning of this thread and read thorough all the posts. There is a wealth of information and things we have done to get relief. I am a cilantro smoothie advocate, as well as all cotton next to the skin. Diet also helps because of inflammatory foods. Good luck.

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@mariannj

@catlover32 If it is Grovers, your best bet would be to start at the beginning of this thread and read thorough all the posts. There is a wealth of information and things we have done to get relief. I am a cilantro smoothie advocate, as well as all cotton next to the skin. Diet also helps because of inflammatory foods. Good luck.

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I will thank you!

Liked by MariannJ

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@catlover32

Hello, I’m new here and was recently diagnosed with grovers through a FaceTime appointment with a dermatologist due to covid-19. I’m a healthy, pregnant, 32 year old female with very fair, generally clear skin. I was staining my porch on three hot days we’ve had recently (I live in NC) and this rash just came from out of no where. It definitely sounds like grovers to me just from my own research, but the dr gave me Triamcinolone and told me it should go away in two weeks. It’s been about a week and it seems to be getting worse. The worst of it is on my stomach but it is all over me (legs, arms, back, chest). I feel hideous and the more research I do, the more it seems like this is not something that is just going to go away. I just need some help and encouragement 😔

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I agree with other who suggests looking at info here. The dermatologists give no hope for a cure and usually Rx cortisone which has side effects. For immediate help with itching the OTC Witch Hazel w/14% alcohol has helped me. Apply generously with hands 2x daily.

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@catlover32

Hello, I’m new here and was recently diagnosed with grovers through a FaceTime appointment with a dermatologist due to covid-19. I’m a healthy, pregnant, 32 year old female with very fair, generally clear skin. I was staining my porch on three hot days we’ve had recently (I live in NC) and this rash just came from out of no where. It definitely sounds like grovers to me just from my own research, but the dr gave me Triamcinolone and told me it should go away in two weeks. It’s been about a week and it seems to be getting worse. The worst of it is on my stomach but it is all over me (legs, arms, back, chest). I feel hideous and the more research I do, the more it seems like this is not something that is just going to go away. I just need some help and encouragement 😔

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This is a terrible time to get a new diagnosis, both because of COVID-19 and because you are pregnant. Sorry for your suffering. We are all very sympathetic. It is rare for Grover's to affect arms and legs – it is usually, but not always, limited to trunk. It's not possible at this time to get more diagnostic work done, but it might be helpful to pay attention to posts of people with other forms of atopic dermatoses, sometimes referred to as AD. Grover's, otherwise known as transient acantholytic dermatosis, usually lasts 6-12 months in people for whom it is truly "transient." There are people in this group who have had it for a couple of months to several years. There are also forms of AD that affect people only in pregnancy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763729/. The advice you get from the many previous posts hopefully will help. People generously share what worked for them and what didn't, because doctors have little to offer. For any advice you take you'll have to be careful to research safety in pregnancy.

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@babbs

This is a terrible time to get a new diagnosis, both because of COVID-19 and because you are pregnant. Sorry for your suffering. We are all very sympathetic. It is rare for Grover's to affect arms and legs – it is usually, but not always, limited to trunk. It's not possible at this time to get more diagnostic work done, but it might be helpful to pay attention to posts of people with other forms of atopic dermatoses, sometimes referred to as AD. Grover's, otherwise known as transient acantholytic dermatosis, usually lasts 6-12 months in people for whom it is truly "transient." There are people in this group who have had it for a couple of months to several years. There are also forms of AD that affect people only in pregnancy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763729/. The advice you get from the many previous posts hopefully will help. People generously share what worked for them and what didn't, because doctors have little to offer. For any advice you take you'll have to be careful to research safety in pregnancy.

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Thank you! I’ve never thought about it being tied to pregnancy!

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@catlover32

Thank you! I’ve never thought about it being tied to pregnancy!

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Is this similar to what everyone’s else’s look like? This is day 6 with Triamcinolone

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Triamcinolone is a corticosteroid topical cream to relieve itching.(Check with your GP re continued use). If you have biopsy confirmed GD, you need to speak to a Dermatologist who has some understanding about GD. (Few do in Brisbane, Aust.) Do you have consistent itching?, as this is the worst part, in my case, of suffering from GD. Chin up.

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@billjim651

Triamcinolone is a corticosteroid topical cream to relieve itching.(Check with your GP re continued use). If you have biopsy confirmed GD, you need to speak to a Dermatologist who has some understanding about GD. (Few do in Brisbane, Aust.) Do you have consistent itching?, as this is the worst part, in my case, of suffering from GD. Chin up.

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I have not had a biopsy due to covid-19 and was diagnosed over a FaceTime appt. It does itch but nothing like hives do where I want to peel my skin off! The dermatologist said to use the cream for two weeks and then to call back if it doesn’t improve… I think I’m going to call tomorrow and demand a biopsy even though I’ve only been using the cream for about a week. Maybe they can just take it while I’m in my car-I don’t care! The worst part for me is aesthetics which I know is ridiculous but I already have very fair skin so it stands out like a sore thumb. It’s about to be summer time and I live at the beach. 🤦🏼‍♀️

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Sure looks like GD. Go to detmnetnz.org.
They have a mass of representative photos. Study about GD. Steroids do little good for us, other types of eczema can get temporary relief from eczema with steroids. Read this blog starting in Feb. We have found a few treatments that help some of us. You’re lucky if your itching and pain are minimal. Forget taking off your shirt in public until you go into remission.My first outbreak lasted a full year. Your biopsy is only valid if taken during the right stage of your breakout. My biopsy was negative but I
clearly have GD and been coping for 4 years now. It comes and goes with normally 6 months on and 6 months off but because of the cilantro treatment and changing diet- zero processed sugar
Limited natural and reduced gluten have been clear for longer than 6 months now.
You will need to accept that this is a chronic condition and study and blog as
doctors can do nothing. I’ve heard Facebook has a very active site. Yet this site I am grateful for because I learned about the cilantro treatment which works from of us.

Liked by MariannJ, Chloe Liu

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@catlover32

I have not had a biopsy due to covid-19 and was diagnosed over a FaceTime appt. It does itch but nothing like hives do where I want to peel my skin off! The dermatologist said to use the cream for two weeks and then to call back if it doesn’t improve… I think I’m going to call tomorrow and demand a biopsy even though I’ve only been using the cream for about a week. Maybe they can just take it while I’m in my car-I don’t care! The worst part for me is aesthetics which I know is ridiculous but I already have very fair skin so it stands out like a sore thumb. It’s about to be summer time and I live at the beach. 🤦🏼‍♀️

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So I have been diagnosed with Pemphigoid Gestationis. It’s an autoimmune disease that is associated with pregnancy. Thank you everyone!

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@gardeningjunkie

Did you know one commonality of those of us with GD is having another auto-immune disease? I had leukemia. Like you before my first major GD breakout that lasted a year I was itchy at the neck and bra area I always had to remove tags from clothing. Yet that could have been my Allergic Contact Dermatitis, ACD, causing it because I am allergic to blended fibers, so even if wearing a cotton shirt if the tag is blended I itch. i can't wear any elastic as it has an element of rubber in it. So wearing bras, unless 100% cotton is out. I kept thinking my torso itching was an allergic reaction and I was missing what I was exposed to as I have changed my mattress, clothing, grooming products and much more. I know now I had a combination of issues the GD and ACD.

Have you ever had the 5 Day Extended Patch Test for ACD? Medicare pays for this expense test which gave me the names of my allergic tormentors. Google this exact test as it is not the 30 minute prick test for environmental allergies. I ask this because now I have 3 forms of eczema, not realizing I had additional form/forms for years before learning I had added news one that required different treatment. GD is the hardest to deal with as it has a mind of it's own.

This new outbreak is mild so far compared to previous ones and I only have a few spots on front torso, previously that area would break out but never as severely as the back torso,

Your Whole 30 diet is more restrictive than the anti-inflammation diet I am on, yet there are many similarities. I started my detox in October as an anti-inflammation diet plan. Major success with my chronic yeast issues and this is the first year in the last 4 that I have not required a super scary shot for long term use, its a cortico-steroid (Kenalog 40) which I would get each Dec. So far I have none of the internal stinging and burning that would radiate throughout my body inside my skin that would begin about 10 months after my shot. I would make myself wait the full year, yet I have been told by others they get this shot more frequently. My diet kills off internal yeast (fed by all sugar and carbs) as yeast raises our inflammation, ie histamines that make us itch. Your diet will kill yeast also.

Like you, even with my safe clothing, it must be very soft. Most of us with fiber allergies are safe wearing 100% cotton (free of wrinkle free additives, Scothguard, fire retardent), 100% polyester, 100% silk. Make sure you don't wear any poly-cotton or other blended fibers.

Keep trying the cilantro. My new break out seems stalled. It's still have it in the early stages beginning about 1 1/2 months ago. Now going on 3 weeks of fresh cilantro, however by week 2 on cilantro my breakout wasn't advancing and is still mild. Yet with GD we have permanent cellular changes to our torso skin. There is no cure and hopefully we can keep the inflammation down so our symptoms are less severe or go into remission.

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Ok I have been reading every single post here. I'm now on page 11. I am male, 75 yo & was diagnosed approx 1 month ago with GD. Now here's the thing. I was told, read & believed that GD is an 'old man's disease' yet the majority of contributors here are female. So where are all these geezers? I will also post my story closer to the end of these posts.

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@babbs

The arginine / lysine connection was made by me because I started to explore the theory that GD, while not Herpes, is Herpes-like. It comes on from a variety of triggers, sometimes heat and sun. Sun can be a trigger for Herpes 1. It can come once, or it can recur, much like other forms of Herpes. The first attack is often the worst. In me, it travels up and down my trunk by levels, suggesting a spinal source, not a systemic or skin source. And the fact that quite a number of us found ourselves with GD after shingles shot (and in some cases, including mine, shingles.) The fact that it did not touch the area of skin where my shingles occurred reinforced that impression. So I looked for what could aggravate and what could alleviate Herpes, and that's where arginine/lysine appeared in my research. It was just a wild guess and for me, it yielded a great result. Your diet is already rich in lysine – but my diet is high in arginine and low in lysine. I adopted my diet (essentially the original Pritikin diet, not the watered down version they promote now,) because my brother had serious heart disease. He went on this diet and I did too. My diet was very close to it when I started, so it wasn't a big change for me.

The cilantro connection does suggest heavy metals in some cases. In my case, the cilantro, and taking zeolite, which should also remove heavy metals, including mercury from my system, did nothing. BTW, my research on cilantro as a detox for mercury mentioned that it can removed mercury from organs which puts it into your circulatory system but if you don't take extra measures to remove it, mercury can redeposit itself in even more harmful ways. I read that chlorella should be taken 45 minutes to an hour before cilantro to help with the removal of mercury from the bloodstream. Here's an NIH article about chelation/detox that reviews some of these issues: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/. Chlorella may be next on my list to use. What a journey!

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I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

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@mnitchke

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

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@mnitchke The only way you will know if the cilantro will work for you is to try it and patiently stick with it. For some it took months to resolve or lighten. It might be wise to also add chlorella (tablets can be purchased on internet) to help with the cilantro. I am a believer in the cilantro, cotton and whole 30 diet for the worst of the time. Click on my name and you can read my posts only. Start at the bottom, which is the beginning. That is much easier than trying to tell you everything I know.

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@mnitchke

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

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Chlorella paired with cilantro can help with eliminating heavy metals from your system. Chlorella should ideally be taken 45 minutes before cilantro. (I wash and freeze my cilantro to keep fresh. I break off a generous bunch and put in my smoothie.) I have been taking both – added chlorella a couple of weeks ago; cilantro alone did nothing for me. I take approximately 3 grams/day. I think it is making a difference.

My GD rash has faded considerably. My rash has changed from chicken pox like bumps to more prickly heat type tiny, barely visible bumps. Itching continues and is variable. Sometimes I think, "Yay, it's going away," and then I itch worse than ever, despite the fact that my bumps are barely visible. I think my GD is changing and my efforts are resulting in keeping it at bay, rather than curing. I am using witch hazel on bumps, I then follow with a moisturizer and arnica if itch is less, extra strength Bengay if it is bad. (Anything with menthol and camphor produces a burning sensation which competes with the itch.) Also, I take a drowsy making antihistamine at bedtime. I use chlorpheneramine because it's cheap and I can buy bottle of 1000 from Amazon for very little money. Basically, I take pretty much every bit of advice from people on this group. Dermatologists and meds have not been very helpful for most.

Regarding the source of your body aluminum, here's an article from the CDC outlining some common sources of aluminum: https://www.atsdr.cdc.gov/phs/phs.asp?id=1076&tid=34.

The articles on removal of heavy metals with cilantro and chlorella do not mention aluminum. Here's a great summary article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/.

Regarding the removal of aluminum specifically, there is a drug called Desferrioxamine which you might ask your doctor about. Here's an article about removal of aluminum using this drug. https://pubmed.ncbi.nlm.nih.gov/3842106/ Also, there is some documentation of the use of mineral water to reduce aluminum via silica content of mineral water. Here is a couple of article summaries that addresses that. https://pubmed.ncbi.nlm.nih.gov/22976072/ and https://pubmed.ncbi.nlm.nih.gov/17435954/ I may try that myself, just in the interest of preventing Alzheimer's disease.

Itching is a most terrible torture:(

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