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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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MariannJ | @mariannj | Apr 1, 2019
In reply to @gardeningjunkie "Like kimass1 I am using about 2 cups of both stems and leaves (why waste the..." + (show)
@gardeningjunkie

Like kimass1 I am using about 2 cups of both stems and leaves (why waste the stems as they totally blend up smooth). If I wasn't off sugar I would love adding strawberries and bananas like you do. If you put it in a blender you don't need to chop up. I simply grab with 2 hands and tear the amount I am using in half and put it in the blender and the blender does all the work and I have a 30 year old blender. I do add Stevia artificial sweetener and it helps the flavor. Have you tried not breathing and just chugging the smoothly? I do that when drinking Psyllium Husk for regularity. I don't taste if I don't breath at all until the end. Surprisingly I am getting used to the flavor of cilantro and can drink it slowly now. Also if you hate the taste the strawberries and banana bulk it up- more volume to get down.

Do you have any papuales or scabs or the just itching? How long have you had this breakout? What supplements are you taking? I must admit this is no miracle for me, yet it does seem to stall a major breakout or is it just coincidence? I still have a hundred papuales and some are scabbed on my back, just about 10 on stomach torso yet the itch is minor this time and so far no pain. I can still rest on my back and drive leaning against back of car seat not hunched over the steering wheel because of the pain caused by any contact.

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@gardenjunkie I am a newbie. I was diagnosed with Grovers mid February but now I know I had it most of January and Doc thinks prior to that. Today I added even more cilantro to my smoothie. My itching also seems to increase at night (never knew histamines were elevated then) and I put Vanicream on to lubricate since I am trying to stay away from the steroid. I have papulae and sometimes they fade and sometimes bright red and raised. Sometimes the itching comes from just one single one and sometimes the itching comes from an area where I are see none. I am also a complex case with another rare entity going on, and that is leiomyomas from HLRCC, though I haven't had the associated cancer yet, and hope never to. (Google HLRCC) I have lived with the leiomyomas for 30 years now and new clusters always itch terribly. That's why I did not know Grovers from leiomyomas. I have had itchy stuff going on in my back area for years and always have my husband put a lot of lotion on it. In a mirror I can see the rash but he didn't know what it was so I just went with the flow and itched. Having it on my front is a whole new storyline. Does anyone know if stress can exacerbate the condition, or pressure, as from clothing? I rarely wear a bra anymore but even loose clothing seems to irritate it. Well, I am on the cilantro express now and I will see how it goes this month and check in again when there is news to report. The good news is that my whole 30 diet is now on day 36 and a new way of life for me. Disregarding the itching, I have never felt so young and energetic and wonderful and I am 78. Thanks again for caring.

REPLY
gardeningjunkie | @gardeningjunkie | Apr 1, 2019

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.

REPLY
4 replies
frogger | @frogger | Apr 1, 2019
In reply to @gardeningjunkie "Did you know one commonality of those of us with GD is having another auto-immune disease?..." + (show)
@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.

Jump to this post

Thanks. I’ll ask my dermatologist about the patch. And hopefully the cilantro smoothies begin working. My yogurt/orange juice mixture actually tastes good! Very surprised. And that’s with any of the Yoplait fruit flavors. And thanks again for the reply.

REPLY
MariannJ | @mariannj | Apr 1, 2019
In reply to @gardeningjunkie "Did you know one commonality of those of us with GD is having another auto-immune disease?..." + (show)
@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.

Jump to this post

I will ask my dermatologist about the ACD test. I see him in a few weeks. I have also cut tags out of my clothes for years. You mentioned internal burning and stinging. Exactly what I had in January/February. It was difficult to describe. Thank you soooo much again.

REPLY
gardeningjunkie | @gardeningjunkie | Apr 2, 2019

Right now am wear a loose fitting, flowing 100% cotton dress by Oh My Gauze (internet order), very cool and comfortable. I always wash new clothes in my allergy free detergent and remove tags before wearing. My neck started itching 1/2 hour after putting it on. I removed and saw I had missed a 1/4 inch tag at neck with the size on it. Obviously the tag was not made of 100% cotton.

REPLY
frogger | @frogger | Apr 5, 2019
In reply to @kimass1 "My bunches are about half that size. My best suggestion is that I use about 2..." + (show)
@kimass1

My bunches are about half that size. My best suggestion is that I use about 2 cups of both stems and leaves chopped up. Every day.

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My itching with Grover’s has slowly subsided after 9 days of cilantro smoothies. Also take 4 each of vitamins A and D each morning. Seems to be working well. Next I’m going to try running although I’ve been told that heat and sweat will bring it on.

REPLY
1 reply
MariannJ | @mariannj | Apr 5, 2019
In reply to @frogger "My itching with Grover’s has slowly subsided after 9 days of cilantro smoothies. Also take 4..." + (show)
@frogger

My itching with Grover’s has slowly subsided after 9 days of cilantro smoothies. Also take 4 each of vitamins A and D each morning. Seems to be working well. Next I’m going to try running although I’ve been told that heat and sweat will bring it on.

Jump to this post

I started 5 days ago according to my recent post and I am totally accustomed to the taste now and I have not had new papulas. The old ones aren't as red. I am still supplementing one pill a day, just in case. I bought some unsweetened almond/coconut milk to try tomorrow with my banana and strawberry mix. Sometimes I even throw in a few blueberries. This whole time I was using almond/cashew milk. I'm looking forward to the day when I can say there is nothing to see anymore. At that point, do I quit the cilantro or is it a daily thing for the rest of my life? Sigh!!!!

REPLY
1 reply
gardeningjunkie | @gardeningjunkie | Apr 5, 2019
In reply to @mariannj "I started 5 days ago according to my recent post and I am totally accustomed to..." + (show)
@mariannj

I started 5 days ago according to my recent post and I am totally accustomed to the taste now and I have not had new papulas. The old ones aren't as red. I am still supplementing one pill a day, just in case. I bought some unsweetened almond/coconut milk to try tomorrow with my banana and strawberry mix. Sometimes I even throw in a few blueberries. This whole time I was using almond/cashew milk. I'm looking forward to the day when I can say there is nothing to see anymore. At that point, do I quit the cilantro or is it a daily thing for the rest of my life? Sigh!!!!

Jump to this post

I am sure you plan to run early in the day. From what I read of the Earth Clinic blog most GD sufferers who went off cilantro had subsequent break outs. Many were so grateful for getting relief (one blogger was dealing with a 6 year breakout) rather than go off it and breakout again they decided to stay on the cilantro plan for life. Remember GD is chronic, meaning no cure. We can just be grateful if we find treatments that help.

MariannJ as I am dealing with a very mild break out which hasn't progressed since the cilantro plan; I will definitely stay on the fresh until clear. I do get remission breaks now, 6 months on then 6 months off as a pattern. I think when I clear up I might try continuing with the fresh and every other day take the tablets instead of fresh.

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seth971 | @seth971 | Apr 5, 2019

So I continue with the extract of cilantro. About two weeks now. I never had too much of a rash so it’s hard to see if it’s a lot better. Seems to be a little better. Will give it the full month. I think I might have asked this already, has anyone tried cbd creams or pills. Apparently it’s really good for easing skin issues. Just wondering before I spend money on it

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1 reply
gardeningjunkie | @gardeningjunkie | Apr 5, 2019
In reply to @seth971 "So I continue with the extract of cilantro. About two weeks now. I never had too..." + (show)
@seth971

So I continue with the extract of cilantro. About two weeks now. I never had too much of a rash so it’s hard to see if it’s a lot better. Seems to be a little better. Will give it the full month. I think I might have asked this already, has anyone tried cbd creams or pills. Apparently it’s really good for easing skin issues. Just wondering before I spend money on it

Jump to this post

I tried CBD oil drops. Dosages not clear, seems varies per person. I found no improvement in my eczema or arthritic knee pain. You are right about the expense!!! However I know 2 people that swear by it for their pain.

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