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?

@jpearo

I’m actually trying tetracycline right now. It is starting to clear a little. I don’t really like it though because the pills make me a little dizzy. I’m sorry you are going through this.

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I understand the need for bacterial control but Instead of an oral antibiotic which can kill your good bacteria that keeps yeast in check (over production of yeast increases inflammation in the body) have you tried a localized topical antibacterial which can be helpful if your pustules or papules have broken open? Clindamycin Phosphate or Metonidazol? Maybe use both to?

@sharsharlee

Sounds familiar except I’ve been told for years that my itchy bumps were just a contact dermatitis. Wasn’t until I spent a spring in hot humid Hawaii then went to the hot dry SW for 3 weeks of hiking and finally landed in Colorado where my red bumps were profusely spread over my trunk and spreading to arms and legs. I was miserable! Once home I saw my dermatologist and she found a “newer” lesion that clearly showed Grover’s and not just inflamed cells. It’s been 9 months since the start of this extreme flare; after 3 months of phototherapy 2-3x/week and Triamcinolone dabbed on hot spots, along with Luke warm soda water soaks 2x/wk, no vigorous exercise and cold packs to the itching burning areas in the evening, I’m seeing light at the end of the tunnel. For me, I had to stop use of all commercial lotions and use straight up coconut oil to moisturize 2x/day. Messy but it’s the only product that does not burn. I also undertook a 30 day elimination type eating plan (Whole 30) to reduce systemic inflammation. I truly felt better doing this; and have noticed increase in “flares” as I’ve reintroduced the foods I’d eliminated. Seems as I get to higher dosing in my UVB phototherapy I’m having more “flares.” Has anyone else experienced this?

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Just because we have GD doesn't mean we don't have other forms of eczema; I have 3 types.Most of us with eczema, an autoimmune disease either have or will develop another autoimmune disease and will also add to our list of types of eczema. You mentioned giving up commercial lotions (which are a toxic soup of chemicals, preservatives, alcohols, fragrance and even natural ingredients we can be allergic to). I strongly recommend getting the 5 Day Extended Patch Test. Do you know coconut, a natural ingredient is a major offender and included in the patch kits for testing for a reason. I would have never guessed on my own what allergens I had. Like you for years derms assumed my torso rashes were part of my Allergic Contact Dermatitis issues not bothering to dig deeper. Google this exact test.

I'm so glad I found your group I have had Grover's for over 7 months and have tried 12 different steroid creams and some made it worse and none have made it go away. Then dermatologist said to do UVB rays so I went to tanning booth I cover my face my bumps are mainly under my breasts. It helped a little. I was approved for a breast reduction to help with this but now my Plastic Surgeon is concerned about doing the procedure due to the rash is still there. I told her it is not a infectious or contagious. I can understand but she saw it when it was at its worse she said she wants to see it again in a week. I have been trying over the counter stuff but I appreciate the information on diet change here on the forum which I'm going to start doing. Does anyone know somebody that had Grovers and had a breast reduction done. I believe it would help my rash. Also the phy is afraid the scar would not heal with the rash there.

If the Grover's rash is infected I imagine it could be an issue for surgery, but GD itself is not contagious and yours may not be infected. I imagine your PS could biopsy for bacterial infection Steroids did nothing to help my GD and the first outbreak is normally the worst for most of us. My first major breakout lasted 1 year (normal for most of us) and subsequently I get about 6 months on and 6 months off, although after having it now for 3-4 years I am past due for my 6 month outbreak and I can feel the under-skin bumps beginning but I only have a few papuales that have broken. The area is barely itchy and not painful yet. I do believe my diet changes have helped, but then again as mentioned for many of us the early years with GD are the worst so I am hoping milder outbreaks are in my future.

I would think since GD or Transient Acantholytic Dermatitis,ACD, is transitory for most, simply let this outbreak run it's course and then have your surgery. You would be more comfortable healing and your PS would be more confident of the results. It would be a challenge for me to heal from surgery because the GD causes intense pain for me when laying on my back torso. You will be spending time healing and what, lay on your side all the time?

In the meantime let's brainstorm for some relief and try to do what you can to have this outbreak run it's course. Give up on steroids, they don't help most of us with GD and they cause all sorts of long term complications. True if they helped me, which they don't, I would still use them just to stop the itching and pain. Do not sweat- yes a controlled environment, keep your breast area dry and if at all possible give up your bra (never an underwire) or at least remove it when your are home. Buy yourself some "old lady" (I can say this as I am 70) Muumuu's made of only 100% cotton to put on at home for breast modesty, shop on line as many have blended materials in most stick and mortar retail shops.Find a brand that sells a soft high quality cotton or best of all sew up a few as there are many simple patterns. I have a double whammy as I also have Allergic Contact Dermatitis, ACD, and one of my allergy's is to blended material- poly/cotton, elastic- even latex free so regular bras are out of the question. Yet all regular bras contain elastic and blended material are tight and girlie you need to hang loose. Friction will trigger and prolong your GD outbreak. I also wear 100% cotton button up 2 pocket camp shirts of denim or 100% cotton and can forfeit a bra when I am in public, but I am small breasted. After your surgery perhaps you could go bra less this way to forestall a breakout. Cottonique has 100% cotton front tie bras and bra liners (the liner has a small band of elastic on the bottom I remove and run a cotton drawstring). Yet no support for large breasts and I can't recommend their bras for you at this time, yet I have large breasted blogging friends that don't have elastic allergies that buy their soft cotton bra liner to wear under their bra to prevent eczema rashes.

Meds- Only 2 that seem to stall my outbreak or keep it from running wild are: 1. Anti-bacterial to use when papuales have broken- Clindamycin Phosphate and 2. Vitamin D- Calcipotriene Cream, .005% (expensive PX) yet try Good RX on line for great discount, free coupons for all. I may try immune suppressant (not a steroid) Elidel, which worked great for another form of eczema I have for my next outbreak

Since I feel the little under skin bumps waiting to breakout the last month I put on the Calcipotriene about every 3 days after showering and I have had no progression.

So to sum it up, I say wait out the year. Getting a reduction now will only stress your body and even with smaller breasts you have GD for life and as mentioned do what you can to get over this outbreak.

My hubs is going on over a year. He wishes to have relief. Things seem to work, and then he has to stop them. Like, the high dose vitamin A was great, but could only go on 2 weeks. The high steroid cream works, but can only go on 2 weeks. He keeps getting secondary rashes, which we are putting zinc on, and he is taking zinc pills. A friend of my mom's is a famous doc and he suggested that this could be related to the adrenal gland and suggested drenamin. Anyone else try this?

Just a quick update – hope it helps others. So here is my treatment protocol that so far has been working. From all the posts here, its clear it won't work for everyone but hopefully it can help someone. Two times a day, I rub Calcipotriene Cream .005, then Betamethasone Val .1% Lotion, then Lubriderm Advanced Therapy (otc) and then Sarna (otc – the one with CAmphor and Menthol) on the rash area, as well as the rest of my chest, back and arms. If i get a little itchy during the day, i just use the lubriderm and sarna lotion to get me thru it. What also has helped is using only warm water in the shower, washing my hair with DHS Shampoo and DHS Conditioner, AND when i am done before i dry off, i apply Johnson's Baby oil on chest and back. The prescription stuff seems to be keeping the rash at least from getting worse and it has cleared up around my neck. I noticed that my skin had been getting a little dry so the lubriderm helped that. Finally, i really like the Sarna – lets me put clothing on and lasts at least an hour or two before i get that tingling/itchy feeling. I should add, i make sure that ONLY 100% cotton clothes touch my body now. Ideally organic cotton. And i don't use any softener or dryer sheets on my clothing anymore – use only detergent and bleaches that have nothing added/sensitive skin type stuff.

After a long day of work, especially if i don't use the lubriderm/sarna at all, i can't wait to get home and lather up. Then it's sweatpants and a cotton tshirt and life is just about livable.

Please be careful with the above prescriptions though – i have read from several people that Calcipotriene actually makes it worse for them. ITs also really expensive. And some have said that Sarna does nothing and/or makes it even worse when it wears off. I should also add my rash isnt that bad – the worse thing for me is the tingling/itchy back where there is no rash but i have been assured it's there. Keeping really busy at work keeps my mind off of it … unlike writing this post which now has it front of mind. Ugh.

Feel better everyone.

Liked by gardeningjunkie

Doc has now changed up program once more. I now use the Triamcinolone 0.025% (low dose) twice a day for five days and Elidel 1% twice a day on weekends. Doc took another biopsy and stitched the hole (I had him remove the worst one). I will post results of that when in. Doc has now started me on Isotretinion pills 40mg once a day. I would like to mention that I am seeing very significant improvement from day one of starting the pills only 7 days ago. I'm over 50% cleared up which may be the best I had ever been (previously) with the Impoyz cream (only allowed to use for two weeks max – then only to return). Can't wait to see next week. I'd also like to mention I started the Vanicream bar soap at the same time a week ago from these posts.

I was diagnosed with Grover's disease back in October 2018. It started as a small patch on the back of my head and neck but then spread down to about 80% of my body by January. I was MISERABLE! I tried many different topical steroids and creams. I read through all the posts here and tried about everything suggested. I went Gluten and sulfate free too. None of which helped calm the terrible itch. The only thing that gave me temporary relief was Sarna lotion which I purchased at the drug store. Oral steroids would also stop the itch but as soon as I came off of them the rash and itching came right back. I also felt terrible side effects while on the Prednisone but for me it was better than the itching. I began researching other remedies and believe it or not I think I stumbled upon a cure! I read on a couple other forums that eating 1 bunch of cilantro a day had cured several people suffering with Grover's. So I decided to try it. I thought "what do I have to lose"? I was super skeptical, and I HATE cilantro. But I was also desperate. Within a couple weeks the rash was noticeably improved and within a month it is completely gone! I can't imagine how something so simple could do the trick and I am baffled that no doctor seems to know about this cure. I would ask that anyone suffering give it a try. It only costs about $1 a bunch and again, it couldn't hurt to give it a try. Hopefully you will all have success like myself and the many others.

@kimass1

I was diagnosed with Grover's disease back in October 2018. It started as a small patch on the back of my head and neck but then spread down to about 80% of my body by January. I was MISERABLE! I tried many different topical steroids and creams. I read through all the posts here and tried about everything suggested. I went Gluten and sulfate free too. None of which helped calm the terrible itch. The only thing that gave me temporary relief was Sarna lotion which I purchased at the drug store. Oral steroids would also stop the itch but as soon as I came off of them the rash and itching came right back. I also felt terrible side effects while on the Prednisone but for me it was better than the itching. I began researching other remedies and believe it or not I think I stumbled upon a cure! I read on a couple other forums that eating 1 bunch of cilantro a day had cured several people suffering with Grover's. So I decided to try it. I thought "what do I have to lose"? I was super skeptical, and I HATE cilantro. But I was also desperate. Within a couple weeks the rash was noticeably improved and within a month it is completely gone! I can't imagine how something so simple could do the trick and I am baffled that no doctor seems to know about this cure. I would ask that anyone suffering give it a try. It only costs about $1 a bunch and again, it couldn't hurt to give it a try. Hopefully you will all have success like myself and the many others.

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Thank you very much for the info about cilantro and did hear from another that it helped but ignored it because my GD was dormant so no need to force myself to eat it. My Grover's had been dormant since July and is now starting up again. I started using a saved tube of Elidel, an immune suppressant last week as a treatment for the first time (I had used it on Perioral Eczema with success). The bumps are stalling and the itch is much less. Steroids never helped me at all. Sadly Sarna never helped me with itching.
I do think my diet changes, no sugar and limited carbs and zero gluten helped slow down my current outbreak, plus so far dramatically less misery.
I definitely will try the cilantro as I am motivate now but how in the world did you manage to eat it. I think a handful of grass would be easier to eat. I like a bit of cilantro in Mexican food and can't image eating a bunch a day!!!!

Liked by kimass1

@jbd3

Doc has now changed up program once more. I now use the Triamcinolone 0.025% (low dose) twice a day for five days and Elidel 1% twice a day on weekends. Doc took another biopsy and stitched the hole (I had him remove the worst one). I will post results of that when in. Doc has now started me on Isotretinion pills 40mg once a day. I would like to mention that I am seeing very significant improvement from day one of starting the pills only 7 days ago. I'm over 50% cleared up which may be the best I had ever been (previously) with the Impoyz cream (only allowed to use for two weeks max – then only to return). Can't wait to see next week. I'd also like to mention I started the Vanicream bar soap at the same time a week ago from these posts.

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jdb3- You may still have GD if your biopsy is negative like mine was. I was biopsied at the end of my 1 year break out when the papuales were waning. If you check out the New Zealand Derm site I met all the common criteria except most are male. Plus their excellent photos of various eczema types matched mine to GD. My torso rash is classic on back and front torso and should have been obvious to my regular derm who kept treating it as a rash based on my Allergic Contact Dermatitis, ACD and I was getting zero relief. Also couldn't figure out how my ACD would be triggered as I had detoxed my world. It's hard to get doctors to not put you in a box,as they stop looking for other forms of eczema once they label you. I went to a new derm and she took one look and knew immediately

@kimass1

I was diagnosed with Grover's disease back in October 2018. It started as a small patch on the back of my head and neck but then spread down to about 80% of my body by January. I was MISERABLE! I tried many different topical steroids and creams. I read through all the posts here and tried about everything suggested. I went Gluten and sulfate free too. None of which helped calm the terrible itch. The only thing that gave me temporary relief was Sarna lotion which I purchased at the drug store. Oral steroids would also stop the itch but as soon as I came off of them the rash and itching came right back. I also felt terrible side effects while on the Prednisone but for me it was better than the itching. I began researching other remedies and believe it or not I think I stumbled upon a cure! I read on a couple other forums that eating 1 bunch of cilantro a day had cured several people suffering with Grover's. So I decided to try it. I thought "what do I have to lose"? I was super skeptical, and I HATE cilantro. But I was also desperate. Within a couple weeks the rash was noticeably improved and within a month it is completely gone! I can't imagine how something so simple could do the trick and I am baffled that no doctor seems to know about this cure. I would ask that anyone suffering give it a try. It only costs about $1 a bunch and again, it couldn't hurt to give it a try. Hopefully you will all have success like myself and the many others.

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@kimass1 I shall shop for cilantro. Will keep all posted. Thanks for the info.

Liked by kimass1

@mariannj

@kimass1 I shall shop for cilantro. Will keep all posted. Thanks for the info.

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@gardenjunkie I honestly did not think it would work. I started with a half bunch in a smoothie containing sherbet and fruit because I couldn't stand the taste. I increased to a whole bunch and added a tsp. of Chlorella to the mix after a few weeks at the suggestion of others that have benefited. The taste never gets better, so I just choke it down. Please keep me posted. I hope you find success too! ps one guy was eating 5 bunches a day…that seems excessive but it worked for him….so…

I went ahead and ordered the extract – Herb Farm – and also ordered some Chlorella. Health food store said that the extract might even be better in delivering the benefits of the Cilantro – who knows but i know its going to be pretty hard for me given travelling to eat a bunch of raw cilantro each day. Will keep you posted if the rash and itchiness goes away.

Liked by kimass1

@seth971

I went ahead and ordered the extract – Herb Farm – and also ordered some Chlorella. Health food store said that the extract might even be better in delivering the benefits of the Cilantro – who knows but i know its going to be pretty hard for me given travelling to eat a bunch of raw cilantro each day. Will keep you posted if the rash and itchiness goes away.

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seth971- I like the idea of extract and will check out Herb Farm, yet will picking up fresh cilantro today. I take oregano extract to control yeast and can't imagine eating the equivalent fresh. The oregano tablets with oregano oil do cause a bit of burping for an hour or so after taking and your taste buds definitely know it is oregano and it will be interesting if cilantro extract does the same.
kimass1- your recipe sounds about as appealing as a kale smoothie which made me gag (yet I like fresh Kale cooked or in a salad). Yet your idea of camouflage to trick our taste buds is what I will try.

Liked by kimass1

@gardeningjunkie

seth971- I like the idea of extract and will check out Herb Farm, yet will picking up fresh cilantro today. I take oregano extract to control yeast and can't imagine eating the equivalent fresh. The oregano tablets with oregano oil do cause a bit of burping for an hour or so after taking and your taste buds definitely know it is oregano and it will be interesting if cilantro extract does the same.
kimass1- your recipe sounds about as appealing as a kale smoothie which made me gag (yet I like fresh Kale cooked or in a salad). Yet your idea of camouflage to trick our taste buds is what I will try.

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Some people put it in salad I just prefer sweet over "savory" lol! It's gross to me either way. I have not heard whether any of these folks used the extract, they all went with the raw bunches and found success. So let me know if it works. It sounds WAY more appealing and easy.

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