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?

@nek

Any thoughts on skin humidity? I'm in the far northeast of VT and seem to experience the first touch of GD when an ok day time indoor temp is good but being in bed before house temp has reduced seems to stir the GD, mostly on my back. I now keep temps in the mid 60's and dress for that. Eczema also in my mix, since age 2. Winter is coming and I wonder about skin humidity issues?

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I have had GD as per Biopsy, for approx 2.5 yrs, and now slowly diminishing to where I call "Stage 3", i.e. only severe itching when my Skin Temperature increases due to additional clothing in Winter, (not an unbearable issue in Brisbane, Qld. Aust.). Bed time is my nightmare as blankets and even cotton sheets will cause a flare-up. (Sends me ratty for about an hour or so). Humidity can range from 45 to 85 degrees during the day without any change to GD itch, and I have found that once my skin temp has reached a point of equilibrium after I get up in the morning, very little itching throughout the day. Thanks for small mercies. Wet or dry weather conditions don't seem to make any noticeable difference to my "itch cycle".

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@billjim651

I have had GD as per Biopsy, for approx 2.5 yrs, and now slowly diminishing to where I call "Stage 3", i.e. only severe itching when my Skin Temperature increases due to additional clothing in Winter, (not an unbearable issue in Brisbane, Qld. Aust.). Bed time is my nightmare as blankets and even cotton sheets will cause a flare-up. (Sends me ratty for about an hour or so). Humidity can range from 45 to 85 degrees during the day without any change to GD itch, and I have found that once my skin temp has reached a point of equilibrium after I get up in the morning, very little itching throughout the day. Thanks for small mercies. Wet or dry weather conditions don't seem to make any noticeable difference to my "itch cycle".

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Correction to my previous post – Humidity range should read ''%".

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@hope4cure

Wow. Well, I’ll have to look up some of what you said. I know I do break out if I don’t use the rosacea medicine which is basically a fungicide. I’ve learned with all my itchies to stay away from steroids which is the first thing a Derm wants to prescribe. I think that’s what really escalated my scalp issues. Never again. But stay away from them entirely. I’m too sensitive to it and so is my skin. I will look into your question if it can be bacterial and fungal. Jeez, I hope not. That sounds like a hard fix. I’m already nervous about the topical antibiotic the Derm prescribed. I will try it in a small area first. Thankfully I don’t have to take an oral one.

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I'm not sure about testing you have had, if you already mentioned it remind me. If steroids are making you itch it could be that you are allergic to a class of steroids. There are 5 classes and I am only allergic to one. That is the class that cortisone cream is in, plus many other common steroids. It gets even more complicated if allergic to the class I tested positive to, there can be a cross over to two other classes of steroids so those should be avoided. Yet that does leave me with two other safe for me classes of steroids.
I am wondering if your scalp issue escalated because of an allergy to a steroid? It is rare. Yet we are in this group because we are the exceptions. The 1%. Once again doctors let me down for years on this issue. I had burning on my female privates and the gynecologists' prescribed steroids. It burned badly immediately after application. I told them that and was told I couldn't get better if I didn't keep using it. I could tolerate at most for 30 minutes of misery. A month later got the 5 Day Extended Patch Test and one positive was to the steroid in cortisone. I called the nurse and told me there was no such thing and to keep using the cream. I sent the office my test results and so in the future they would not assume cortisone is always safe. Never heard back and never went back to this large, big city doctors group.
No more issue now because of diet changes. No more processed sugar to fuel my yeast colonies. We all have living yeast in our systems, but starving them from their sugar kills them.
Why are you afraid of a topical anti-biotic? I am allergic to sulfa oral antibiotics, but not aware of any topical anti-biotic issues. My only concern would be the media it is in as I am allergic to preservatives. Get all the active and inactive ingredients and study on the internet for allergic reactions.

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@billjim651

I have had GD as per Biopsy, for approx 2.5 yrs, and now slowly diminishing to where I call "Stage 3", i.e. only severe itching when my Skin Temperature increases due to additional clothing in Winter, (not an unbearable issue in Brisbane, Qld. Aust.). Bed time is my nightmare as blankets and even cotton sheets will cause a flare-up. (Sends me ratty for about an hour or so). Humidity can range from 45 to 85 degrees during the day without any change to GD itch, and I have found that once my skin temp has reached a point of equilibrium after I get up in the morning, very little itching throughout the day. Thanks for small mercies. Wet or dry weather conditions don't seem to make any noticeable difference to my "itch cycle".

Jump to this post

Even with my GD remission I still only feel good in loose clothing. It might be the weight of the sheets and blankets trigger your itching going to bet, but our histamine levels are significantly higher in the evening for everyone. Google it. Also for me when I was symptomatic I was distracted with daily activities, but as soon as I lay down in my bed the itching skin was my full focus. I did use Flanax Liniment, a topical capsacian cream, it is hot chilies. It would burn going on and burn for a few minutes more. I used a long plastic cooking spoon to apply to middle of back. My pride kept me from asking my husband because my skin was so ugly all rashed up. Surprisingly the burn of the chilies felt better than the itch. The burn subsides and I could get about 30 minutes with enough itch reduction to fall asleep. Must wash hands after application so not to rub your eyes or they will burn.

Liked by billjim651

REPLY
@hope4cure

Wow. Well, I’ll have to look up some of what you said. I know I do break out if I don’t use the rosacea medicine which is basically a fungicide. I’ve learned with all my itchies to stay away from steroids which is the first thing a Derm wants to prescribe. I think that’s what really escalated my scalp issues. Never again. But stay away from them entirely. I’m too sensitive to it and so is my skin. I will look into your question if it can be bacterial and fungal. Jeez, I hope not. That sounds like a hard fix. I’m already nervous about the topical antibiotic the Derm prescribed. I will try it in a small area first. Thankfully I don’t have to take an oral one.

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Daily I eat a good whole milk pro-biotic plain unsweetened yogurt which has 6 live cultures. I like the Stoneyfield Organic which is sold at most Walmart's. Between my husband and myself I need to buy 3-4 32 oz containers a week. He uses for colitis, but I like keeping my good bacteria healthy in my gut. These cultures help keep the yeast in control and if you ever need oral anti-biotics which kill the bad and good bacteria you need this to rebuild your gut health. I don't believe topical anti-biotics effect your gut health.

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@gardeningjunkie

I'm not sure about testing you have had, if you already mentioned it remind me. If steroids are making you itch it could be that you are allergic to a class of steroids. There are 5 classes and I am only allergic to one. That is the class that cortisone cream is in, plus many other common steroids. It gets even more complicated if allergic to the class I tested positive to, there can be a cross over to two other classes of steroids so those should be avoided. Yet that does leave me with two other safe for me classes of steroids.
I am wondering if your scalp issue escalated because of an allergy to a steroid? It is rare. Yet we are in this group because we are the exceptions. The 1%. Once again doctors let me down for years on this issue. I had burning on my female privates and the gynecologists' prescribed steroids. It burned badly immediately after application. I told them that and was told I couldn't get better if I didn't keep using it. I could tolerate at most for 30 minutes of misery. A month later got the 5 Day Extended Patch Test and one positive was to the steroid in cortisone. I called the nurse and told me there was no such thing and to keep using the cream. I sent the office my test results and so in the future they would not assume cortisone is always safe. Never heard back and never went back to this large, big city doctors group.
No more issue now because of diet changes. No more processed sugar to fuel my yeast colonies. We all have living yeast in our systems, but starving them from their sugar kills them.
Why are you afraid of a topical anti-biotic? I am allergic to sulfa oral antibiotics, but not aware of any topical anti-biotic issues. My only concern would be the media it is in as I am allergic to preservatives. Get all the active and inactive ingredients and study on the internet for allergic reactions.

Jump to this post

I am not sure if allergic I was able to use it short term but after some time it made my scalp burn badly. Which is a side effect if used more than a few weeks.

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@gardeningjunkie

I had been dealing withGD for several years. I was in remission and clear at the time I got the Shingrix vaccine. My first experience with shingles started about 3 days after getting the Shingrix vaccine. At first I thought my GD had returned, yet my rash was plaque like and not my typical clusters of tiny papuales. Typical itching of GD and in the same GD area. I went to my dermatologist who told me it Shingles and was definitely tied to the vaccine. He said shingles and GD are closely related. I am sorry I didn't ask for more specific information to could share with others. Dr. Jonathan Bellew, DO Mohave Skin and Cancer Clinics, 928-758-4475 That was a year ago and after I cleared up about 1 1/2 months later I have had neither GD or Shingles, I base my GD being in remission for so long because of cilantro detox. I did not go in for second Shingrix shot.

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Glad that people have started posting again. Just for the record, I have been struggling with something, diagnosed as GD after a biopsy, for a little more than a year. It started with itching in my ears and then spread to my back where it was pretty nasty. Presently the itching on my back is minor. The irritations have been localized on three areas of my torso and have remained there for a number of months. Some days the itching disappears, on others it comes back, but mostly on these three areas. Minor and controllable itching will come and go on other parts, mainly my back, of my torso. I control it with cilantro and Lysine as well as generic topicals. A friend of mine was diagnosed with GD and Lysine seems to keep it in remission. Nothing else. After following this site for about the last 10 months, I feel fortunate that my symptoms are much less serious than many others. My sincerest sympathy's to those who suffer more than myself. It appears that my itching is different than most, as it has localized and hasn't spread significantly. I was just interested in any feed back to see if any one else out there is familiar with what I am going through. Thanks.

Liked by gardeningjunkie

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@hope4cure

I am not sure if allergic I was able to use it short term but after some time it made my scalp burn badly. Which is a side effect if used more than a few weeks.

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I find if any topical irritates me it never gets better; the irritation gets worse. I'm not talking about stinging, like with Witch Hazel it will sting it applied to symptomatic skin, but it is not an allergic reaction it is just that the skin is compromised. Witch Hazel doesn't sting healthy skin. Many allergies take time to show up. So you could be allergic to this treatment. Read all ingredients. If not listed contact the manufacturer. You need to have both active and inactive ingredients to research. To test if this in an allergy try rubbing some inside your elbow for 2 weeks and see what happens.

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@gardeningjunkie

I find if any topical irritates me it never gets better; the irritation gets worse. I'm not talking about stinging, like with Witch Hazel it will sting it applied to symptomatic skin, but it is not an allergic reaction it is just that the skin is compromised. Witch Hazel doesn't sting healthy skin. Many allergies take time to show up. So you could be allergic to this treatment. Read all ingredients. If not listed contact the manufacturer. You need to have both active and inactive ingredients to research. To test if this in an allergy try rubbing some inside your elbow for 2 weeks and see what happens.

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Agree I will try that first

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@hope4cure

Agree I will try that first

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I quickly read your older posts, but most were about GD. I was looking to find what you use on your scalp and hair, I'm not sure what shampoo you are using or any other products you are using on your glorious long hair which you have in your photo. What did stand out to me about your older posts which I missed before was your mention that excessive Lysine can thin the hair. I do naturally shed in cycles and it does regrow but never like when I was younger. About 3 months ago I went from taking 1/2 dose daily of Lysine to a full does. It seems my shedding is more than usual right now. Strangely I always shed in the fall, it seems logical a mammal would shed in the spring. Perhaps I'm like a bird molting its summer plumage for its winter feathers. Also although some say Lysine helps, I only take it as an insurance policy as I have taken 1/2 dose daily for 5 years and it never made a bit of difference when I was symptomatic. Maybe a full dose is needed. Since I am asymptomatic presently with all forms of my eczemas I think I may give it up if it contributes to hair loss.

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@hope4cure

Agree I will try that first

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I looked Lysine and hair loss up and actually there is no association of Lysine excess with hair loss. Yet a deficiency of Lysine causes hair loss The only excess supplements to cause hair loss were: biotin, ribolavin, folate and B12. Guess I stay on my full dose.

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@gardeningjunkie

I looked Lysine and hair loss up and actually there is no association of Lysine excess with hair loss. Yet a deficiency of Lysine causes hair loss The only excess supplements to cause hair loss were: biotin, ribolavin, folate and B12. Guess I stay on my full dose.

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I dont remember what I read about the lysine. It was enough to scare me. Which doesn’t take much with regards to supplements and medications. Daily I take biotin 5mg, omega 3 fatty acids 600 mg, of course calcium and vitamin d bc of my age and 200 mg of magnesium bc I get headaches. I use free and clear shampoo bc anything else gives my scalp a burning reaction. Once a month I use a dandruff shampoo with Pyrithione zinc bc of the dermatitis. Sometimes I get a reaction (Burning) sometimes I don’t. It might be bc sometimes the dermatitis might be extra sensitive all I know is I can’t use the steroid Fluocinonide topical solution bc either I have become sensitized to it or allergic but it’s what the Derm wants me to use which I don’t. Also prescribed is ketoconazole 2% shampoo (generic for nizol) which I haven’t used yet bc I’m afraid of a reaction. I never used to be afraid of anything I used until I became sensitive to things now it’s almost a phobia. That’s why I was nervous about the lysine bc of one article it was also related to the reading of getting too much vitamin A. (The cilantro) I was taking sumatriptan for migraines and that’s when I noticed the hair thinning. Now I only use that if the headache is so bad it makes me forget about the fear of hairloss but even that medication is ok as long as it is not excessive same for biotin and of course lysine and vitamin A. My hair sheds in the summer. It’s like clock work when it starts getting sunny. And again like clockwork when it’s fall it sheds less. It’s normal shedding and I’m assuming my age 51 it’s Normal for it to thin not in my 20’s anymore. But it does break easily around the hairline. I get frustrated dealing with all this. You would think I would be relieved it’s not Grover’s which I am but it’s the same things to deal with the itch and the bumps as Folliculitis.

REPLY
@gardeningjunkie

Even with my GD remission I still only feel good in loose clothing. It might be the weight of the sheets and blankets trigger your itching going to bet, but our histamine levels are significantly higher in the evening for everyone. Google it. Also for me when I was symptomatic I was distracted with daily activities, but as soon as I lay down in my bed the itching skin was my full focus. I did use Flanax Liniment, a topical capsacian cream, it is hot chilies. It would burn going on and burn for a few minutes more. I used a long plastic cooking spoon to apply to middle of back. My pride kept me from asking my husband because my skin was so ugly all rashed up. Surprisingly the burn of the chilies felt better than the itch. The burn subsides and I could get about 30 minutes with enough itch reduction to fall asleep. Must wash hands after application so not to rub your eyes or they will burn.

Jump to this post

My journey was thru Dermatologists usual road -Corticosteroid cream, Antihistamine – 25mg at night and 180 mg daytime etc.
Have you looked at a website http://www.groversdiseasetrearment.com where there is a sub-folder on the home page shown as "Invention" which purports to have a cream to cure GD.
I recently received a sample, unbranded and am dubious re using, reason being their address is Chicago and the U.S. customs certificate is stamped Miami and mailed to Australia from there. (???)

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@hope4cure

I dont remember what I read about the lysine. It was enough to scare me. Which doesn’t take much with regards to supplements and medications. Daily I take biotin 5mg, omega 3 fatty acids 600 mg, of course calcium and vitamin d bc of my age and 200 mg of magnesium bc I get headaches. I use free and clear shampoo bc anything else gives my scalp a burning reaction. Once a month I use a dandruff shampoo with Pyrithione zinc bc of the dermatitis. Sometimes I get a reaction (Burning) sometimes I don’t. It might be bc sometimes the dermatitis might be extra sensitive all I know is I can’t use the steroid Fluocinonide topical solution bc either I have become sensitized to it or allergic but it’s what the Derm wants me to use which I don’t. Also prescribed is ketoconazole 2% shampoo (generic for nizol) which I haven’t used yet bc I’m afraid of a reaction. I never used to be afraid of anything I used until I became sensitive to things now it’s almost a phobia. That’s why I was nervous about the lysine bc of one article it was also related to the reading of getting too much vitamin A. (The cilantro) I was taking sumatriptan for migraines and that’s when I noticed the hair thinning. Now I only use that if the headache is so bad it makes me forget about the fear of hairloss but even that medication is ok as long as it is not excessive same for biotin and of course lysine and vitamin A. My hair sheds in the summer. It’s like clock work when it starts getting sunny. And again like clockwork when it’s fall it sheds less. It’s normal shedding and I’m assuming my age 51 it’s Normal for it to thin not in my 20’s anymore. But it does break easily around the hairline. I get frustrated dealing with all this. You would think I would be relieved it’s not Grover’s which I am but it’s the same things to deal with the itch and the bumps as Folliculitis.

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You are dealing with challenging health issues. Do doctors have any idea what causes your headaches. My father used to get migraines in his 40's (I do wonder how much this was caused by my mother) but he said after age 55 he didn't get them anymore. Maybe yours will wane. I think I am the only one that reacts to Free and Clear Shampoo, within a week my scalp is itching. As I mentioned there are 5 classes of steroids. I tested allergic to one. So you may have become allergic to Fluocinonide, but there are 4 other classes. If you want to use a steroid research what class Fluocinonide is in and avoid those and check out the other 4 classes and ask your derm which one of those you can substitute.

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@billjim651

My journey was thru Dermatologists usual road -Corticosteroid cream, Antihistamine – 25mg at night and 180 mg daytime etc.
Have you looked at a website http://www.groversdiseasetrearment.com where there is a sub-folder on the home page shown as "Invention" which purports to have a cream to cure GD.
I recently received a sample, unbranded and am dubious re using, reason being their address is Chicago and the U.S. customs certificate is stamped Miami and mailed to Australia from there. (???)

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I read that post and almost commented but hoped others would know by now not to fall for these scams Those of us that have had eczema for years have seen these scams come and go. In fact about 6 years ago a man kept promoting his cream that cured eczema and many of us reported this and got him blocked. There is no cure for eczema. It can go into remission, but this autoimmune disease is incurable. When I first got eczema I didn't understand that.
I've had people requesting to be my friend, which I accepted at first even though they weren't regular posters and they talk you into sending them your email address and then hustle you to sign up for their miracle product which only can be sold with a monthly automatic payment from your bank account. Believe me they are convincing and when suffering we become desperate. They tell you stories about their child that was cured by their product. Now I never give my real name or addresses.
Only purchase grooming products from companies with a good reputation and all active and inactive ingredients are listed. If they say it is a secret formula those are warning flags- do not buy it. I would be afraid to even put on the free sample which is probably coming from China.
I've been targeted by sellers reporting their melaleuca oil, emu oil, secret cure formula and so on could cure me. If that was the case eczema would be a thing of the past.
If a group of regular bloggers reported success with a treatment and I could check out the ingredient list to see if it was safe for me I would try it and have tried many recommendations I felt were safe. But a stranger with no history selling an unknown product?

Liked by MariannJ, billjim651

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