Grover's Disease: What works to help find relief?

Have you had any cures?

Hi all. I'm a 47 year old female and was diagnosed with GD about 15 years ago. It's never gone away but does get worse and better at times. Since neither my diagnosis nor its longevity seem to jive with everything I've read about GD, a dermatologist did another biopsy last year and once again it came back positive for GD. I just finished a round of Whole 30 and did not notice a difference. I typically limit dairy and gluten in my diet anyway. It's only ever been on my upper abdomen and can be very painful at its worst. I've tried different dermatologists, used cortisteroids and whatever other creams have been prescribed over the years, use products for sensitive skin and eliminated fabric softener. Very frustrating. One thing I've noticed lately is that my skin is very itchy on my arms and legs (not where my bumps/GD is located). I'm at my wit's end with this--just curious if I'm the only one out there who's had this experience. I've been reading a lot of great information on this site so thanks everyone for sharing.

I'm not sure how this will appear - The box says "Post Reply" - I tried to post earlier, but don't see my post. I'm a 72 yo woman who had 3 shingles shots; the live virus one when I was 59 and the two non-virus ones in the past year. I had an outbreak of shingles not long after my last shingles shot and following the resolution of that rash, developed GD. Interestingly, it did not touch the area over the shingles outbreak (under my right clavicle.) I saw that it seemed to only affect previously sun-damaged skin (all damage was done before the age of 20.)

The fact that cilantro is so widely recommended implies that there is some kind of heavy metal toxicity, since cilantro is a known heavy-metal detox. In addition to using cilantro in my smoothie, I have started to take zeolite, (well researched to be safe) from a company called Waiora. Zeolite is a material that is used to remove heavy metals in the environment, in livestock and in people. Waiora seems to have a proprietary method of scrubbing the zeolite to remove existing heavy metals to make room for whatever it runs into in your body. It binds very firmly with heavy metals so it never releases them into your body, but escorts it out.

A dermatologist posted a video on YouTube of a punch biopsy of GD showed lots of empty spaces between skin cells (typical of sun-damaged skin) and said that the papules were comprised of dead skin cells. From this I gathered that scrubbing the papules in the shower would not do any harm. To address the "empty spaces" in sun damaged skin, (I think of this as leaky-skin syndrome) I have started ingesting collagen (which I buy at Costco) and high molecular weight hyaluronic acid. High molecular weight HA is anti-inflammatory, low molecular weight HA is a carcinogen. I was expecting it to take 3 months for that to have any effect. It seems to me that the outbreak areas have now (after less than a month) been chased to smaller areas where my skin is thinnest - in between my breasts. It seems that there is now a triple layer of bumps in that area and it both itches and hurts. However, there seem to be some wayward bumps on my stomach and sides where there isn't any sun-damaged skin. Regardless of the effect on GD, the collagen and hyaluronic acid have made my facial skin look better than it has in 40 years! I have read on this site that people have been using alcohol, witch hazel and vinegar on their outbreaks. I have started using vinegar - but I will try witch hazel, and I appreciate the recommendation of Eucerine Skin calming body wash - I will pick some up today.

I am able to get some sleep wearing a tight fitting turtleneck turned inside out. I wish I had a full body elastic suit, like a leotard. Anything loose - clothing or bedding - that touches my skin causes tickle=itching. Arnica gel worked for awhile but then stopped. It still works for daytime itch, but not night. Bengay at night burns but takes away the itch - usually have to reapply in the middle of the night. I take Chlorpheniramine (an anti-histamine, which is cheap, sedating and OTC, at night which both calms itch and helps sleep.I also have learned to shower or wipe sweat after any workout. I tried a sauna, as one person talked about that as a treatment, but the sauna in my retirement community is so yucky, I just can't do. I appreciate everyone's sharing their experiences and possible solutions. I would like people's input as to what moisturizer they feel is best. I have been making a concoction of coconut oil with frankincense, eucalyptus and tea tree essential oils. I have no idea what would work best.

I'm not sure how this will appear - The box says "Post Reply" - I tried to post earlier, but don't see my post. I'm a 72 yo woman who had 3 shingles shots; the live virus one when I was 59 and the two non-virus ones in the past year. I had an outbreak of shingles not long after my last shingles shot and following the resolution of that rash, developed GD. Interestingly, it did not touch the area over the shingles outbreak (under my right clavicle.) I saw that it seemed to only affect previously sun-damaged skin (all damage was done before the age of 20.)

The fact that cilantro is so widely recommended implies that there is some kind of heavy metal toxicity, since cilantro is a known heavy-metal detox. In addition to using cilantro in my smoothie, I have started to take zeolite, (well researched to be safe) from a company called Waiora. Zeolite is a material that is used to remove heavy metals in the environment, in livestock and in people. Waiora seems to have a proprietary method of scrubbing the zeolite to remove existing heavy metals to make room for whatever it runs into in your body. It binds very firmly with heavy metals so it never releases them into your body, but escorts it out.

A dermatologist posted a video on YouTube of a punch biopsy of GD showed lots of empty spaces between skin cells (typical of sun-damaged skin) and said that the papules were comprised of dead skin cells. From this I gathered that scrubbing the papules in the shower would not do any harm. To address the "empty spaces" in sun damaged skin, (I think of this as leaky-skin syndrome) I have started ingesting collagen (which I buy at Costco) and high molecular weight hyaluronic acid. High molecular weight HA is anti-inflammatory, low molecular weight HA is a carcinogen. I was expecting it to take 3 months for that to have any effect. It seems to me that the outbreak areas have now (after less than a month) been chased to smaller areas where my skin is thinnest - in between my breasts. It seems that there is now a triple layer of bumps in that area and it both itches and hurts. However, there seem to be some wayward bumps on my stomach and sides where there isn't any sun-damaged skin. Regardless of the effect on GD, the collagen and hyaluronic acid have made my facial skin look better than it has in 40 years! I have read on this site that people have been using alcohol, witch hazel and vinegar on their outbreaks. I have started using vinegar - but I will try witch hazel, and I appreciate the recommendation of Eucerine Skin calming body wash - I will pick some up today.

I am able to get some sleep wearing a tight fitting turtleneck turned inside out. I wish I had a full body elastic suit, like a leotard. Anything loose - clothing or bedding - that touches my skin causes tickle=itching. Arnica gel worked for awhile but then stopped. It still works for daytime itch, but not night. Bengay at night burns but takes away the itch - usually have to reapply in the middle of the night. I take Chlorpheniramine (an anti-histamine, which is cheap, sedating and OTC, at night which both calms itch and helps sleep.I also have learned to shower or wipe sweat after any workout. I tried a sauna, as one person talked about that as a treatment, but the sauna in my retirement community is so yucky, I just can't do. I appreciate everyone's sharing their experiences and possible solutions. I would like people's input as to what moisturizer they feel is best. I have been making a concoction of coconut oil with frankincense, eucalyptus and tea tree essential oils. I have no idea what would work best.

I understand what you mean by stinging being a relief from itching. I wonder if acupuncture has that effect- ones nerves focus on the needle prick with acupuncture and the itch is not the focus of the brain. I so get how lack of sleep will drive us insane- I would lay in my sleepless bed and plan ways to kill myself- yet that was not with GD, believe it or not the itch, sting and burning skin was worse for me with my Allergic Contact Dermatitis before I got diagnosed after having the 5 Day Extended Patch Test. Avoidance of allergens is key to controlling those rashes and sensations and surprisingly have had dramatically fantastic results giving up processed sugar and limiting natural sugar.
When I looked up MGUS it did state that it can mutate into lymphoma and also that rash could be one of the side effects. Good news you tested benign to lymphoma which is truly a concern. There was no description of the rash. Heck you could have GD along with rash effects from the MGUS.
I never tested positive to GD with biopsy, but my symptoms are classic and I do have it. Yet if you tested negative to lymphoma in 2014 you clearly didn't have it then or you would be symptomatic by now, more than just enlarged lymph nodes. Lymphoma was a big fear for me, it's a tough one. It's good you still have your blood tested, I used to have it done semi-annually but now just annually just in case the leukemia returns.
We both need to seize the day because we are surviving and our skin right now is a good as it ever will be!!!!

I have posted on this site several times about my situation, but I will give you a synopsis of my experiences with GD. I am 99% sure it was the shingles shots I got last summer and fall, that prompted my disease. I have a very healthy immune system, and virtually no shot of any kind had any kind of negative effects, swelling, pain, tiredness, etc., in the past. After my first shot, my ears started to itch, after my second, the itching spread and got worse and worse. I waited just two months and two weeks to get the second shot. Possibly, if I had waited longer I might have avoided this. So far I have tried just about EVERYTHING, including over two months of cilantro smoothies, with very little effect. Ironically, Motrin is the most effective itch stopper for me. I don't like taking it due to its negative effect on the kidneys. I never take more than four a day, two early in the day, and two before I go to sleep. I took the Motrin for an elbow problem and realized that, surprisingly, my itching subsided. I have also taken one week of oral steroids which helped. I've been told that one week is not long enough, that two weeks is far more effective, so I am going back to my physician to hopefully get another round. Similar to you, my clothing also can prompt itching. I bought a long sleeve t-shirt at Uniglo a year or two ago that might suit your needs. They also sell the long legged tights. Very light and smooth. I am furious at the Shingrix, the manufacturers of the vaccine, for not warning people about the possible negative side effects of the shots. I have already called the hotline and made my feelings known. I am going to send them an e-mail soon, as I think it's important that we go on the record about this. I really don't have any expectations about a result, but feel it's important, nonetheless. Thanks for sharing your thoughts.

I have posted on this site several times about my situation, but I will give you a synopsis of my experiences with GD. I am 99% sure it was the shingles shots I got last summer and fall, that prompted my disease. I have a very healthy immune system, and virtually no shot of any kind had any kind of negative effects, swelling, pain, tiredness, etc., in the past. After my first shot, my ears started to itch, after my second, the itching spread and got worse and worse. I waited just two months and two weeks to get the second shot. Possibly, if I had waited longer I might have avoided this. So far I have tried just about EVERYTHING, including over two months of cilantro smoothies, with very little effect. Ironically, Motrin is the most effective itch stopper for me. I don't like taking it due to its negative effect on the kidneys. I never take more than four a day, two early in the day, and two before I go to sleep. I took the Motrin for an elbow problem and realized that, surprisingly, my itching subsided. I have also taken one week of oral steroids which helped. I've been told that one week is not long enough, that two weeks is far more effective, so I am going back to my physician to hopefully get another round. Similar to you, my clothing also can prompt itching. I bought a long sleeve t-shirt at Uniglo a year or two ago that might suit your needs. They also sell the long legged tights. Very light and smooth. I am furious at the Shingrix, the manufacturers of the vaccine, for not warning people about the possible negative side effects of the shots. I have already called the hotline and made my feelings known. I am going to send them an e-mail soon, as I think it's important that we go on the record about this. I really don't have any expectations about a result, but feel it's important, nonetheless. Thanks for sharing your thoughts.

I am going to report my GD as a possible adverse reaction to the shingles shot. I would encourage anyone who feels they have had a similar experience to do the same. Because I'm new on this group, they won't let me post the link, but you can Google reporting adverse reaction to vaccination and you will find the government website. They will want the dates of the vaccine and dates of outbreaks of shingles or other symptoms. I'm also going to tell my MD.

I have posted on this site several times about my situation, but I will give you a synopsis of my experiences with GD. I am 99% sure it was the shingles shots I got last summer and fall, that prompted my disease. I have a very healthy immune system, and virtually no shot of any kind had any kind of negative effects, swelling, pain, tiredness, etc., in the past. After my first shot, my ears started to itch, after my second, the itching spread and got worse and worse. I waited just two months and two weeks to get the second shot. Possibly, if I had waited longer I might have avoided this. So far I have tried just about EVERYTHING, including over two months of cilantro smoothies, with very little effect. Ironically, Motrin is the most effective itch stopper for me. I don't like taking it due to its negative effect on the kidneys. I never take more than four a day, two early in the day, and two before I go to sleep. I took the Motrin for an elbow problem and realized that, surprisingly, my itching subsided. I have also taken one week of oral steroids which helped. I've been told that one week is not long enough, that two weeks is far more effective, so I am going back to my physician to hopefully get another round. Similar to you, my clothing also can prompt itching. I bought a long sleeve t-shirt at Uniglo a year or two ago that might suit your needs. They also sell the long legged tights. Very light and smooth. I am furious at the Shingrix, the manufacturers of the vaccine, for not warning people about the possible negative side effects of the shots. I have already called the hotline and made my feelings known. I am going to send them an e-mail soon, as I think it's important that we go on the record about this. I really don't have any expectations about a result, but feel it's important, nonetheless. Thanks for sharing your thoughts.