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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I used Witch Hazel w/14% alcohol and it did burn briefly on the open lesions but once all dried there has been no recurrence of rash or itching, and I stopped treatment shortly after rash was gone.Hope you and others may have success too!

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@gardeningjunkie

Witch Hazel idea from elderly1 may be the reason or part of the reason my recent severe recurrence of GD is receding, Since cilantro stopped suppressing GD a few weeks before Christmas I erupted with a severe flare up. It wasn't working so I stopped drinking it at Christmas. Plus I was beginning to get some skin darkening on my face, a side effect of heavy cilantro use that previously I had not noticed.
This outbreak was rapid, within a few days I had thousands of little papuales on my back torso, especially mid to upper back, but some joined and I had a half dozen 1 1/2 " patches, solid red, never had this symptom before. The itching was fierce and I tried a few px's that never helped much before, but gave them a try again without improvement. So I tried elderly's treatment of Witch Hazel, only I applied it every other day because I didn't really have much hope. I liberally flooding my back torso and just 2 spots on upper chest. After doing this for about 2 weeks the papuales were beginning to dry up, my thinking was that the WH had a high percent of alcohol causing the dryness. It stung like mad applying, but then left a brief cool feeling. The itching was not helped yet.
Now here is where something else may have helped. My cardiologist put me on an "anxiety" px that he said was non-addictive. HYDROXYZINE HCL 25 mg tab, as needed 3 daily. I Googled it and learned it was an prescription anti-histamine. I started this on Monday, just 6 days ago. I only took 2 daily, one negative side effect is they do give me a very mild headache in my sinus's. The itching did seem less, headache was barely noticeable so a good trade off. By Wednesday, now applying WH daily, the papuales began drying up and scabs began lifting off and I used a heavy layer of Aquaphor Ointment. The itching was noticeably reduced. Friday after shower and WH application and once dry my husband applied the Aquaphor. Even a few days earlier I winced and couldn't help flinching with the application of either WH or Aquaphor, yet by Friday the sensation was mild and my appearance was 75% better. I have the papuales, but they are sub-dermal now, no crusty scabs. 1 1/2" joining of red plaques of papuales. No The itching is cut by 75% too.
Cilantro stopped my last outbreak in a few weeks and although not in remission yet, even if it stays at this level I can easily cope.
I still don't understand the rapid severity of the outbreak or the quick recession. It is still not gone, but dramatically improved.
I made an appointment with my derm thinking I might get a cortico-steroid shot of Kenalog 40 to help with the itching and it took 2 weeks to get in which is tomorrow. I wish I had taken a photo o how I looked 2 weeks ago. I am not sure I want the shot now.
I want to thank elderly1 for sharing.

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Hello. I have had a recurrence of GD. It started in late November. Very depressing. My dermatologist wanted to start me on doxycycline, again. after having been on antibiotics for eight months I picked up the prescription and did not take them. I went to my primary doctor and showed her my rash she took blood and included an allergen panel. It turns out I have an allergy to peanuts and hazelnuts. Who knew. I love peanut butter. Could this be part of my Grovers I dont know. She also prescribed me hydroxyzine 25 mg tablets to take three times a day. I too wake with a sinus headache. I’m only taking the pill once a day as it makes me tired. This past Saturday I spent an hour in a salt cave. They put me close to the halogenertor so the fine salt would fall onto my skin. and as crazy as this is going to sound on Sunday I woke up feeling quite good. No itching! I did not have Grovers on my mind and I did not take any of my medication that day- I just forgot. So I don’t know if the salt helped my body or if it’s this new medication that is helping me. Today, it’s here but it’s tolerable. I do have witch hazel in the house and a spray bottle so I am going to try that concoction. I am very sorry that the cilantro smoothie stopped helping you. I also found a Facebook group regarding Grovers if you are interested you should join.

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@suecee

Hello. I have had a recurrence of GD. It started in late November. Very depressing. My dermatologist wanted to start me on doxycycline, again. after having been on antibiotics for eight months I picked up the prescription and did not take them. I went to my primary doctor and showed her my rash she took blood and included an allergen panel. It turns out I have an allergy to peanuts and hazelnuts. Who knew. I love peanut butter. Could this be part of my Grovers I dont know. She also prescribed me hydroxyzine 25 mg tablets to take three times a day. I too wake with a sinus headache. I’m only taking the pill once a day as it makes me tired. This past Saturday I spent an hour in a salt cave. They put me close to the halogenertor so the fine salt would fall onto my skin. and as crazy as this is going to sound on Sunday I woke up feeling quite good. No itching! I did not have Grovers on my mind and I did not take any of my medication that day- I just forgot. So I don’t know if the salt helped my body or if it’s this new medication that is helping me. Today, it’s here but it’s tolerable. I do have witch hazel in the house and a spray bottle so I am going to try that concoction. I am very sorry that the cilantro smoothie stopped helping you. I also found a Facebook group regarding Grovers if you are interested you should join.

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Interesting about the salt. I imagine it would be antibacterial and possibly drying? Glad it got yoru mind off the GD itch. I have never heard of a salt cave or this treatment, sounds pretty wild! But why not? I would try it.
Peanuts contain mold, so I am not allowed because of yeast issues which raise inflammation. Also antibiotics raise yeast levels and raise inflammation, so when my derm wanted me to go on doxy for rosacea I avoided it and stuck with topicals that did the trick. Internal antibiotics never helped with GD, but I have used Clindamycin, a topical antibiotic. I never did show infection. Many nuts are heavy in metals and on this site there was an interesting article about mercury (a liquid metal) being a cause of GD and of Parkinson's. I have so tried to give up nuts (I had the hair test showing nut allergies and I had blood test which showed 6 metal allergies) and gave up my almonds for a week but am breaking down again and snacked on them yesterday and today. Maybe this is also part of the reason I improved this week?
I have resisted the Facebook group as I blog on this site and the Inspire site and only so many hours in the day for free time, but like you others praise it. If my improvement stalls or fails I will consider blogging on it because I am always searching for inspiration and ideas. This Mayo site has been amazingly helpful, yes the cilantro stopped working, but it stopped my last outbreak so I had 14 months free of GD. I really forgot what the itching and pain felt like.

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@gardeningjunkie

Interesting about the salt. I imagine it would be antibacterial and possibly drying? Glad it got yoru mind off the GD itch. I have never heard of a salt cave or this treatment, sounds pretty wild! But why not? I would try it.
Peanuts contain mold, so I am not allowed because of yeast issues which raise inflammation. Also antibiotics raise yeast levels and raise inflammation, so when my derm wanted me to go on doxy for rosacea I avoided it and stuck with topicals that did the trick. Internal antibiotics never helped with GD, but I have used Clindamycin, a topical antibiotic. I never did show infection. Many nuts are heavy in metals and on this site there was an interesting article about mercury (a liquid metal) being a cause of GD and of Parkinson's. I have so tried to give up nuts (I had the hair test showing nut allergies and I had blood test which showed 6 metal allergies) and gave up my almonds for a week but am breaking down again and snacked on them yesterday and today. Maybe this is also part of the reason I improved this week?
I have resisted the Facebook group as I blog on this site and the Inspire site and only so many hours in the day for free time, but like you others praise it. If my improvement stalls or fails I will consider blogging on it because I am always searching for inspiration and ideas. This Mayo site has been amazingly helpful, yes the cilantro stopped working, but it stopped my last outbreak so I had 14 months free of GD. I really forgot what the itching and pain felt like.

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Hello again, I just read the post about the salt cave and your response. I am writing you because you seem to be extremely knowledgeable about these issues. I think I noticed that at some point you stopped doing the cilantro because it stopped working. I have been drinking cilantro smoothies for about a month now with no real effects that I can point to. I drink them with the hope that over time they will have a cumulative effect. To your knowledge is there a point at which you should notice a difference or does one just continue to hope that eventually they will work their magic ? Very little other than Motrin and cortisone creams has very much success with me. I do the light room and witch hazel as well. As I'm sure you know it is unbelievably frustrating. I do have some days better than others but on the whole I just scratch and suffer through it. I am going to Bali for a month in March and hopr that the sun and salt water give me some relief. I realize that any real cure is more complicated than just getting rid of the itch. Just praying for a cure. Many thanks.

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@nodgabnoj

Hello again, I just read the post about the salt cave and your response. I am writing you because you seem to be extremely knowledgeable about these issues. I think I noticed that at some point you stopped doing the cilantro because it stopped working. I have been drinking cilantro smoothies for about a month now with no real effects that I can point to. I drink them with the hope that over time they will have a cumulative effect. To your knowledge is there a point at which you should notice a difference or does one just continue to hope that eventually they will work their magic ? Very little other than Motrin and cortisone creams has very much success with me. I do the light room and witch hazel as well. As I'm sure you know it is unbelievably frustrating. I do have some days better than others but on the whole I just scratch and suffer through it. I am going to Bali for a month in March and hopr that the sun and salt water give me some relief. I realize that any real cure is more complicated than just getting rid of the itch. Just praying for a cure. Many thanks.

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So sorry the cilantro isn't helping. From my reading only about 50% were helped and for me it worked magically for 8 months. Salt water is anti bacterial so could help with scabs, but when broken out sun is painful on my skin and I avoid it. Also heat is painful. Plus sitting or laying leaning on my back is extremely painful, so an airplane ride would be miserable leaning forward or trying to lay on my side. I found I preferred to stand instead of sitting if possible. Fortunately my sides have been clear to lay down on my sides. I never scratch, even when itching or else the result is extreme itching afterwards, plus broken skin that won't heal.
I am allergic to cortisone.
I mentioned the amazing relief I was getting with the px Hydroxyzine HCL 25 mg. Best itching relief I have found, yet my 1 month old recurring breakout is waning already I believe from the WH. Yet WH is not helping you. I also think the histamine in the Hydroxyzine is helping calm my inflammation.
I wonder if nothing is helping because you are having your initial breakout. My initial breakout lasted 1 year. It covered a larger area, all of the upper front and back torso compared to subsequent ones. Sides clear.
I am hoping for your sake once you tough this initial breakout your subsequent recurrences will have less severe symptoms.

REPLY
@nodgabnoj

Hello again, I just read the post about the salt cave and your response. I am writing you because you seem to be extremely knowledgeable about these issues. I think I noticed that at some point you stopped doing the cilantro because it stopped working. I have been drinking cilantro smoothies for about a month now with no real effects that I can point to. I drink them with the hope that over time they will have a cumulative effect. To your knowledge is there a point at which you should notice a difference or does one just continue to hope that eventually they will work their magic ? Very little other than Motrin and cortisone creams has very much success with me. I do the light room and witch hazel as well. As I'm sure you know it is unbelievably frustrating. I do have some days better than others but on the whole I just scratch and suffer through it. I am going to Bali for a month in March and hopr that the sun and salt water give me some relief. I realize that any real cure is more complicated than just getting rid of the itch. Just praying for a cure. Many thanks.

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I was a little in to my 2nd month before I noticed any change. a few more before it was completely gone! Try to stick with it. I am hopeful you will find relief.

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@nodgabnoj

I just read your posts. Again I am pretty sure that it was the shingles vaccine that gave me the GD. The only other thing that I can think of is that I work out quite a bit and I used to get a rash from sweating right around my solar plexus. I could usually eliminate it with a skin lubricant. Strangely, at this point, despite my working out 4 times a week, it seems to be a non issue at that location. I have started the cilantro smoothies, and they seem to be doing a little bit of good. I might try two a day. I find that for me the two worst times are just after I get up in the am and sometime later in the evening. Motrin is an effective itch stopper for me. I am reluctant to take too much of it as I know it has some negative side effects. At one point I was taking 6 a day, and despite my Dr. saying it was well below the recommended maximum, I try to take two at most. I buy the otc, which is 200 mg. Last night a woman I work with mentioned her Dr. prescribed her the 600 mg. for headaches. I never knew there was one and am wondering as to its effectiveness. Of course I could try 3 200's. Who knows !!!! I have seen a bunch of topicals that I never heard of on other people's posts. If I do try any of them and I find them effective I will let you know. I guess the only positive thing I can come up with is, there is a lot of stuff out there that is much worse than gd. Other than it being a major pain in the neck, it doesn't inhibit me in any other way. I wish us both the best. Have a happy holiday.

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I asked my dermatologist yesterday about the shingles vaccine triggering GD. His answer was, "Yes it can initiate of activate GD". After you mentioned getting GD after a shingles vaccine I thought and figured out that my latest break out happened 3 days after I got my first Shinglix, the adult shingles, vaccine. Since this rash was limited to my back torso, an area not as common for Shingles and also the rash was not at the injection site I hadn't made that correlation. I also mentioned that my outbreak was rapid and severe, I even had plaques of grouped papuales about 1 1/2 inch clustering on my back within 2 weeks. Very itching. These plaques were not typical of my previous GD outbreaks. My dermatologist is Johathan Bellew, D.O. who is a physician for the Mohave Skin and Cancer Center of excellence in Arizona.

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@gardeningjunkie

So sorry the cilantro isn't helping. From my reading only about 50% were helped and for me it worked magically for 8 months. Salt water is anti bacterial so could help with scabs, but when broken out sun is painful on my skin and I avoid it. Also heat is painful. Plus sitting or laying leaning on my back is extremely painful, so an airplane ride would be miserable leaning forward or trying to lay on my side. I found I preferred to stand instead of sitting if possible. Fortunately my sides have been clear to lay down on my sides. I never scratch, even when itching or else the result is extreme itching afterwards, plus broken skin that won't heal.
I am allergic to cortisone.
I mentioned the amazing relief I was getting with the px Hydroxyzine HCL 25 mg. Best itching relief I have found, yet my 1 month old recurring breakout is waning already I believe from the WH. Yet WH is not helping you. I also think the histamine in the Hydroxyzine is helping calm my inflammation.
I wonder if nothing is helping because you are having your initial breakout. My initial breakout lasted 1 year. It covered a larger area, all of the upper front and back torso compared to subsequent ones. Sides clear.
I am hoping for your sake once you tough this initial breakout your subsequent recurrences will have less severe symptoms.

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Not surprised at all to find out about the Shingrix vaccine. I'm no doctor, but there was no doubt in my mind that my GD was triggered by it. Presently, very little is really effective, as I have mentioned. I have some days better than others, but boy, when it hits hard, its brutal. I will continue the cilantro, just to err on the side of hope that it will eventually work. Thanks so much for your input.

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@kimass1

I was a little in to my 2nd month before I noticed any change. a few more before it was completely gone! Try to stick with it. I am hopeful you will find relief.

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Thanks for your response. Yes, I will continue the cilantro, if for no other reason than I mix it in with a lot of fruit, yogurt, and honey. How bad can that be ?

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I was diagnosed with GD after biopsy last Feb 1. In April, with full approval from my dermatologist, I got first of Shingrix shots. Later I got second shot. Neither affected my GD. Just kept taking my cilantro smoothies.

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@frogger

I was diagnosed with GD after biopsy last Feb 1. In April, with full approval from my dermatologist, I got first of Shingrix shots. Later I got second shot. Neither affected my GD. Just kept taking my cilantro smoothies.

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I took my first Shingrix injection the day I started cilantro and noticed no regressive effect. I wish we could offer more clarity and a more clear cause-effect relationship. Perhaps correlation resides in the subtypes of Grovers. Hard to know.

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I've struggled with Grover's for 2 years. It all seemed to start when I stayed at a very dirty airBnB. I liked to sleep with a pillow over my eyes, and when I woke in the morning, my eyebrows and eyelids itched like crazy, and things got worse from there. I developed rosacea on my face, and then the Grover's creeping steadily downward from there. I've read that demodex may be implicated in rosacea and Grover's. My doctor prescribed a host of medications and terminated some of them, usually with no discussion – dermatology practice seems chaotic in my city seems chaotic at best. Some meds were oil-based, and I've read that demodex feed on sebum, and my own experience was that oily creams and the like made the inflammation worse, so I've tended to just use the creams (although I think maybe petroleum-based oil is ok?) I've also read that part of the problem is that the skin reacts to the organisms' feces, and noticed that if I scrub itchy areas with a solution of witch hazel and alcohol, I get a beige-gray grime; and if any areas still itch after scrubbing and I go back over it, I get more grime off – in other words, the presence of the grime exacerbates the itching. This may just be because the skin is already irritated and is simply reacting to any kind of grime that may accumulate on it; but I've also started to wonder if there's a whole skin ecology involved; more about that below. Anyway, most of the meds I've tried haven't seemed to help much. The rash gets better and worse from time to time but has slowly and steadily spread from my shoulders down my chest, armpits, back, upper arms, and down to my wrists, in that order. Once an area's been colonized, the rash there never seems to go completely away. The initial sign of spreading is a fairly intense crawling feeling; then stinging as pink bumps pop out, then intense itching. I carefully resist scratching, or only scratch through clothing, but the bump seem easily inclined to turn into open sores and scab, although the scabs are small. My eyes are also itchier and blearier than before this all began; several times a day, I'll use a fingernail to gently scrape the crud from my eyelid edges. As for treatment, I've gradually developed a regimen that seems to help keep things bearable, although the itching woke me up in the middle of the night the other night; and if I neglect things, I'm quickly thrown back into torment. The regimen is: I scrub all areas with a solution of 2 parts witch hazel to one part 90% rubbing alcohol, trying to remove all grime; then a cortisone cream on particularly itchy areas; then slather on antibiotic cream – the latter really seems to help the healing, and this is one reason I wonder about the skin ecology – that if demodex are involved, maybe other kinds of bacteria also play a role, either in feeding them or simply in the inflammation. I do all that at least twice a day, morning and night, and it usually gives me at least 3 hours of relief from the itching; plus I also use Differin in certain areas to help things heal; and I also apply opthalmic ointment to my eyelid edges every night. And of course I wash my sheets, towels, and clothing two or three times more often than I used to, using tea tree oil in the wash and also in my shampoo and soap; and I only wear the softest cotton shirts, inside out since the seams feel torturously scratchy. If I do all this religiously, I can usually still function; but I estimate it's sucks up nearly 4 or 5 hours per day, and I still feel at least semi-tormented much of the time.

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