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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pwhitney801 | @pwhitney801 | Nov 13, 2022

Sorry to hear about your flare up. I was diagnosed about 5 months ago. It does come and go but mine has never fully gone away. But been very manageable at times. Here are some things I’ve found to be helpful.

Sunflower seed oil- that will help with keeping moisture and avoiding itch. I use this right after I get out of the shower. You can also mix it with a basic lotion like a cerave. Amlactin lotion. This will help more long term. It acts as an exfoliation and will help produce new skin cells. Try also a cold wash cloth with aloe Vera. I use those disposable hand towels that you will see at nice restaurants or higher end hotel bathrooms. You can buy them on Amazon. I bought a cetaphil flare up wash and I try to avoid too much washing where the Groovers are. I’ve noticed that if I’m consistent with cilantro smoothies I notice my dots and any itch associated starts to be less intense and inflamed. Keep being consistent and you should start feeling some relief. I think I remember my dermatologist telling me your skin cycles every 90 days. My most recent trial is being on Doxycycline for a 3 month cycle. Lots of trial and error as it seems there is not a one size fits all type of treatment for this. Hang in there and good luck!

kbhga74 | @kbhga74 | Nov 13, 2022

In reply to @artscaping "Hello, @kbhga74. Welcome to Connect. As you can see.....we believe that sharing with other members on..." + (show)

@artscaping

Hello, @kbhga74. Welcome to Connect. As you can see.....we believe that sharing with other members on this forum is one way to learn more about the condition you have and that's great. What else you will learn as I have is that not every medication or treatment works for everyone.

I had two years of pretty disheartening neuropathic itch during which I frequently went under the light for therapy to relieve all of the itching remains and help heal the open wounds from scratching. It provided some relief....kind of the way your skin feels after being in sunlight. I am concerned about the tanning bed because it is not monitored by a dermatologist or other clinician. The machines are set precisely to manage the treatment time in a graduated course. However, the maximum I reached after four weeks was about 3 minutes. Also, it is important to know that clinical light therapy booths are 360 degrees. That means your entire body is treated at the same time. The staff is also very aware of planning the session to avoid in threat of skin cancer.

Another item you may want to explore is Dermeleve. An OTC, It is available online at http://www.dermeleve.com. The ointment, Dermeleve, is my emergency product. It brings relief in 10-15 minutes and lasts about 6 hours.....time enough to find your medicine that lasts longer.

My other pass-through to you is a product named Dupixent. I waited two years to be approved for Dupixent. It is for an itch that comes from within your body.....not from the wool sweater you just wore for the first time. I do self-injections every two weeks and I will honestly say that I have not had any itching since I started Dupixent. My arms, legs, face, and other skin areas are looking better than they have in several years.

I also have gone through tubes of expensive Rx ointments. Please be careful as some are strong steroids that present other problems. They can cause your skin to become thin and you may be restricted to usage only ever two or three days. Dupixent is steroid free and so is Dermeleve.

How long have you been suffering from this disease? Do you see a specialist at this time?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

I was just diagnosed mid-September. I am seeing a dermatologist, but after no response to my last phone call, I’m going to check in with a new dr.
I will definitely look into the Dermeleve. I just started using the in-shower moisturizer to help combat the dry skin. I also am trying this lotion I found on Amazon. It’s a Manuka honey and colloidal oatmeal mixture. Still a bit itchy, but bearable. I have also bought the Sarna lotion that I saw mentioned here. I’m pretty much up to trying anything, except maybe the cilantro smoothies. I dislike cilantro very much. Unless someone can send some recipes to combat the cilantro soap taste.

sophiep | @sophiep | Nov 14, 2022

In reply to @frjohn "An oral steroid will stop it, but it WILL return when the steroid is discontinued, which..." + (show)

I know that Prednisone is a short term fix, but can you share any knowledge or personal experience that you may have of it's hazards and if it's possible that it may halt the Grover's, at least for a while, after stopping. So far it's been the only way I've gotten complete relief. Clobetasol, a topical and also very strong, offers some relief. I've never had a remission in a year and have severely damaged my skin, so at least for now on the Prednisone I'm healing and not itching.

pitbuell | @pitbuell | Nov 14, 2022

I am just ending my third round of Prednisone for this year, and this time it has not started to come back and it’s been 3 days since the last pill, my lesions look the best they ever have are now flat and a lighter color and no itching, although I am still applying the Avene cream after a semi warm shower, I am hopeful that it is on its way out. I finally see my dermatologist on Dec 2nd, so we’ll see what she says.

frjohn | @frjohn | Nov 14, 2022

In reply to @sophiep "I know that Prednisone is a short term fix, but can you share any knowledge or..." + (show)

I'm not the right person for this question. I subdued mine in an odd sort of way that many people would not be willing to try. I sleep in our guest bedroom in a hammock. It keeps my back cool, even cold, all night long. Antihistamine also helped. That said, it sounds like you're on the right track with the prednisone. You got to get relief however you can find it.

bjv8080 | @bjv8080 | Nov 15, 2022

In reply to @sophiep "I know that Prednisone is a short term fix, but can you share any knowledge or..." + (show)

Prednisone worked well for me temporarily, but it shot my blood glucose way up, so much so that I was put on Metformin—a Diabetes medication.

I've been in photo (light) therapy for years now, and it has remained in remission. I was originally diagnosed with Grover’s in 1976. photo therapy and Prednisone both work for me, but Prednisone’s has side effects that I don’t want.

sophiep | @sophiep | Nov 16, 2022

In reply to @pitbuell "I am just ending my third round of Prednisone for this year, and this time it..." + (show)

This is great news....please keep me posted as I'm still taking my second round and am doing soooo well...haven't felt this good in years! Please keep in touch!

ritasue | @ritasue | Dec 3, 2022

In reply to @jiffy890 "First time post here. I've read many of the insightful comments and truly appreciate all of..." + (show)

I have had great success getting rid of rash and itch with a prescription for Triamcinolone Aceetonide Cream USP, 0.1%. Use twice a day and stop eating fish.

hawkssr | @hawkssr | Dec 4, 2022

In reply to @ritasue "I have had great success getting rid of rash and itch with a prescription for Triamcinolone..." + (show)

On my initial flare up and diagnoses for GD I was prescribed this cream and it worked very well. The flare up I’m having this time the cream has not helped at all and I don’t eat fish. The itching is the worse, pretty much constant, on a GD forum and have tried just about all recommendations but nothing helping this last flare 😫

hawkssr | @hawkssr | Dec 4, 2022

In reply to @sophiep "I know that Prednisone is a short term fix, but can you share any knowledge or..." + (show)

What dose of prednisone are you doing? When my symptoms first started with spreading rash and itching my MD had me try Medrol 4 MG which did nothing so was referred to dermatologist. Two different dermatologists so far and I seem to know more about GD than they do. 🤷🏼‍♀️ Thank you!

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