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?

Interested in more discussions like this? Go to the Skin Health group.

We are all experimenting with ourselves and wanted to share something new for me. I started taking collagen power a few weeks ago. With GD we have lost the collagen with holds our cells together and I am curious if others have tried it. It is also suppose to help with joints,skin, hair and nails. Two kinds- bovine and marine, each with a few differences in the benefits. The bovine is cheap and the marine is fairly expensive. Some say best to take both. I hope this also hopes me with my joints (the bovine has this benefit not the marine). I have noticed no negative side effects or change yet. I always have my normal less than a dozen random papuales, small scabs, not itchy, on my lower back even in remission.

REPLY
@gardeningjunkie

We are all experimenting with ourselves and wanted to share something new for me. I started taking collagen power a few weeks ago. With GD we have lost the collagen with holds our cells together and I am curious if others have tried it. It is also suppose to help with joints,skin, hair and nails. Two kinds- bovine and marine, each with a few differences in the benefits. The bovine is cheap and the marine is fairly expensive. Some say best to take both. I hope this also hopes me with my joints (the bovine has this benefit not the marine). I have noticed no negative side effects or change yet. I always have my normal less than a dozen random papuales, small scabs, not itchy, on my lower back even in remission.

Jump to this post

Thank you for sharing your experiences. It’s the best info I’ve gotten since being diagnosed. You said it perfectly about experimenting with ourselves. It definitely makes sense with the protein. I’m just a little scaredy-cat with the supplements and I’m even more scared of prescribed medication. I’ve been doing the cilantro, keeping to my diet to keep inflammation at bay. I’ll look into the types of L-lysine supplements. Thank you again.

REPLY

Need to correct error, I mentioned collagen power, correct to collagen powder.

REPLY

I was just diagnosed with Grovers disease after suffering for a couple of years with painful itchy eruptions. I have 5 cats and was convinced it was a flea infestation. I have had exterminator spray 3 times, treated cats, trashed rugs and sofa and diligently washing bedding and clothing frequently. Yet still have itchy rash and bite like bumps all over. Feeling desperate and now using strong steroid creams. I have tried aloe gel, calamine lotion, take Benadryl every night or I can’t sleep. What causes this? Can stress trigger? I am losing weight and hair. Of course the current Coronavirus epidemic isn’t helping. Thank you for any advice you can share.

REPLY

to treat the itching try Sarna lotion. Available at drug stores and some supermarkets, What worked for me to lessen the grovers effect was photo light therapy. Ask your Dermo for a referral. Its a small room where your 're exposed to the special light for 30 seconds up to 3 or 4 minutes . It worked for me after 6 months of 2 to 3 times a week.

REPLY
@help4meandu

I was just diagnosed with Grovers disease after suffering for a couple of years with painful itchy eruptions. I have 5 cats and was convinced it was a flea infestation. I have had exterminator spray 3 times, treated cats, trashed rugs and sofa and diligently washing bedding and clothing frequently. Yet still have itchy rash and bite like bumps all over. Feeling desperate and now using strong steroid creams. I have tried aloe gel, calamine lotion, take Benadryl every night or I can’t sleep. What causes this? Can stress trigger? I am losing weight and hair. Of course the current Coronavirus epidemic isn’t helping. Thank you for any advice you can share.

Jump to this post

I have had GD now for about 9 months and this site is the best place to learn how to manage it. I read it every day. Many of the suggestions posted here have really helped me. No one is sure what triggers the disease. I thought the shingles vaccine prompted mine, but there is no way of knowing. If you scroll back to some of the earlier posts you will see that a number of people find relief with smoothies made with a handful of frozen cilantro. Wiping down the affected areas with Witch Hazel is also helpful. The most effective treatment for me was oral steroids. You can take them for 7 days only, in decreasing numbers, as they can affect your kidneys. The other post today mentioned the light room. I did it for a number of weeks with no real results, but I can't continue for obvious reasons, so maybe it will help after I go back to it. Somebody mentioned the value of Lysine. I just received my bottle. I strongly advise you scroll back to the beginning of these blogs and read them. You will gain a wealth of knowledge. One thing you must understand is, what works for one person may not work for another and, that they all take time to work at all. It is a very frustrating disease and you must be patient, if you can, in attempting to deal with it. Stay hopeful.

REPLY
@billjim651

Re oral steroids – I was prescribed a "Burst" dose of Prednisone for a joint inflammation problem and found that eased my GD itching temporarily. May I ask if you could advise the medication name and dosage that you used.

Jump to this post

Sorry this took me so long. The steroid I took was a Medrol dose pack. Again my apologies for taking so long.

REPLY
@nodgabnoj

I have had GD now for about 9 months and this site is the best place to learn how to manage it. I read it every day. Many of the suggestions posted here have really helped me. No one is sure what triggers the disease. I thought the shingles vaccine prompted mine, but there is no way of knowing. If you scroll back to some of the earlier posts you will see that a number of people find relief with smoothies made with a handful of frozen cilantro. Wiping down the affected areas with Witch Hazel is also helpful. The most effective treatment for me was oral steroids. You can take them for 7 days only, in decreasing numbers, as they can affect your kidneys. The other post today mentioned the light room. I did it for a number of weeks with no real results, but I can't continue for obvious reasons, so maybe it will help after I go back to it. Somebody mentioned the value of Lysine. I just received my bottle. I strongly advise you scroll back to the beginning of these blogs and read them. You will gain a wealth of knowledge. One thing you must understand is, what works for one person may not work for another and, that they all take time to work at all. It is a very frustrating disease and you must be patient, if you can, in attempting to deal with it. Stay hopeful.

Jump to this post

Perfect! I was about to summarize for newbie but you beat me to it. :)Using cilantro daily for two months. Hasn’t helped me, but still using. Regarding collagen, I have been taking now for a couple of months. Hasn’t changed my GD but my facial skin looks better. Anything that strengthens the skin matrix is helpful on some level for any AD. I’ve been taking collagen with peptides that Costco sells, but I read that hydrolyzed collagen more easily absorbed, so may switch. Taking lysine 3 grams/day in 3 doses. This has an almost immediate effect of suppressing GD rash and itching. Starting histidine today, also been found to help integrity of skin and reduce symptoms of eczema (which I don’t have.) Also taking hyaluronic acid (HA) – avoid low molecular weight HA as it increases inflammation. It should also strengthen skin. Oh, and I started witch hazel. Don’t know if it’s helping me. I use Arnica if itching not too bad and Bengay (any cream with camphor and menthol would work) if itching is bad. I’m doing everything that I’ve read about here that has a possibility of working, but avoiding steroids.

REPLY
@help4meandu

I was just diagnosed with Grovers disease after suffering for a couple of years with painful itchy eruptions. I have 5 cats and was convinced it was a flea infestation. I have had exterminator spray 3 times, treated cats, trashed rugs and sofa and diligently washing bedding and clothing frequently. Yet still have itchy rash and bite like bumps all over. Feeling desperate and now using strong steroid creams. I have tried aloe gel, calamine lotion, take Benadryl every night or I can’t sleep. What causes this? Can stress trigger? I am losing weight and hair. Of course the current Coronavirus epidemic isn’t helping. Thank you for any advice you can share.

Jump to this post

I have 3 forms of eczema, GD is one. Another miserable form is Allergic Contact Dermatitis,ACD.
Your mentioned an itchy rash and bumps all over. GD is normally limited to front and back torso area. Please Google ACD, which can cause symptoms all over and research the 5 Day Extended Patch Test. The True Test is a common test kit performed by specially licenced derms or allergists. This is not the simple environmental test for allergies to pets, pollen, molds, grasses, dust mites and so on. With this test I learned what detergents,makeups, soaps, fragrance, preservatives (in lotions and topicals as well as is dish soap and so on), fibers, adhesives and so on to avoid for life. The very cleaning products you are using could be seeping though your skin and into your bloodstream raising your histamines. The very clothing, bedding, furniture fibers, carpets and flooring can be off gassing and or with contact seeping though your skin. Skin is not occlusive, what is surrounding you on the outside is getting inside of you and into your bloodstream. Yes it is a bother and expensive to change out your surrounding. Or for example like me need to carry around a plastic bag to cover a theater seat or doctors office chair because of fibers treated with caustic fire retardant, Scotch Guard and made with blended fibers for example, but it can be done. GD is actually more complicated as the triggers are not a immediately obvious. Many with eczema have a collection of forms, so don't assume you only have one type to deal with.

REPLY
@babbs

Perfect! I was about to summarize for newbie but you beat me to it. :)Using cilantro daily for two months. Hasn’t helped me, but still using. Regarding collagen, I have been taking now for a couple of months. Hasn’t changed my GD but my facial skin looks better. Anything that strengthens the skin matrix is helpful on some level for any AD. I’ve been taking collagen with peptides that Costco sells, but I read that hydrolyzed collagen more easily absorbed, so may switch. Taking lysine 3 grams/day in 3 doses. This has an almost immediate effect of suppressing GD rash and itching. Starting histidine today, also been found to help integrity of skin and reduce symptoms of eczema (which I don’t have.) Also taking hyaluronic acid (HA) – avoid low molecular weight HA as it increases inflammation. It should also strengthen skin. Oh, and I started witch hazel. Don’t know if it’s helping me. I use Arnica if itching not too bad and Bengay (any cream with camphor and menthol would work) if itching is bad. I’m doing everything that I’ve read about here that has a possibility of working, but avoiding steroids.

Jump to this post

babbs- Appreciate your info about the collagen, even if it doesn't help with GD good to know about facial skin health!
Have you gone processed sugar free and limit natural fruit and gluten like I have? This helped with another form of eczema and I truly believe it has lowered my histamine level overall helping with GD.
I do take one dose of the 3 gram lysine daily , may up it to what you are doing.
Like you avoid steroids, but with GD found they never helped anyway.

REPLY
@gardeningjunkie

babbs- Appreciate your info about the collagen, even if it doesn't help with GD good to know about facial skin health!
Have you gone processed sugar free and limit natural fruit and gluten like I have? This helped with another form of eczema and I truly believe it has lowered my histamine level overall helping with GD.
I do take one dose of the 3 gram lysine daily , may up it to what you are doing.
Like you avoid steroids, but with GD found they never helped anyway.

Jump to this post

You are such a wealth of information and I appreciate your willingness to share! My diet has been vegetables, beans and lentils, brown rice, oats, nuts and nut butters and seeds, wild caught Alaskan salmon. I am a very boring eater. I don’t use any oil for cooking and the only oils I eat are in avocado and salmon and the black seed oil I recently started. It hasn’t helped my GD but the stuff has been shown to cure almost everything else. 😂 It’s helped my husband’s asthma and allergies, and I’m not stuffy at night anymore. It has to be diluted, best in 1/2 teaspoon honey. Every morning I make a smoothie with non-fat plain yogurt, frozen berries and pineapple, frozen kale, cilantro, and my supplements: lysine, collagen, wheatgrass, assorted other things like pqq, resveratrol, CoQ10, and now will add histidine. My only cheat is very dark chocolate every night. My diet has evolved over the years as I noticed what agreed with me and what didn’t. Unfortunately, my collagen powder and the nuts and seeds are high in arginine which seems to make me worse almost immediately, which is why I space out my lysine because it seems to block that effect.

REPLY
@babbs

You are such a wealth of information and I appreciate your willingness to share! My diet has been vegetables, beans and lentils, brown rice, oats, nuts and nut butters and seeds, wild caught Alaskan salmon. I am a very boring eater. I don’t use any oil for cooking and the only oils I eat are in avocado and salmon and the black seed oil I recently started. It hasn’t helped my GD but the stuff has been shown to cure almost everything else. 😂 It’s helped my husband’s asthma and allergies, and I’m not stuffy at night anymore. It has to be diluted, best in 1/2 teaspoon honey. Every morning I make a smoothie with non-fat plain yogurt, frozen berries and pineapple, frozen kale, cilantro, and my supplements: lysine, collagen, wheatgrass, assorted other things like pqq, resveratrol, CoQ10, and now will add histidine. My only cheat is very dark chocolate every night. My diet has evolved over the years as I noticed what agreed with me and what didn’t. Unfortunately, my collagen powder and the nuts and seeds are high in arginine which seems to make me worse almost immediately, which is why I space out my lysine because it seems to block that effect.

Jump to this post

Now I need to research arginine. I do splurge on almonds, roasted and salted and the addition of salt is certainly not helpful.
My diet is heavy on meats, fresh water fish, poultry, eggs and occasion ocean fish and yes vegetables. I find I do well on high protein foods and the fats in meats, olive oil and butter don't bother me. I avoid all processed meats like corned beef, ham, bacon and luncheon meats.
I am one of the few who never understood most everyone's love of chocolate, so at least that is one food I never had to give up.
Because of metal allergies I try to avoid large ocean fish,like Salmon, but still enjoy salmon at least every 3 weeks.
GD is supposedly tied into mercury. A few months ago a member of this site sent in an article- Mercury, Grover's Disease and Parkinson's which purports that 90% of all Parkinson's victim have GD. Both has similar cellular structural changes. It does say with Parkinson's chelation therapy removing the mercury can lesson Parkinson's symptoms. Mercury is supposedly also detoxed with cilantro. Ironically my younger brother now 66 just got diagnosed with Parkinson's and both sisters have eczema and on of them also has GD. MY brother with Parkinson's doesn't have GD.

REPLY
Please sign in or register to post a reply.
  Request Appointment