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 Support Group.

Has anyone had serious swelling of the lower legs - from and including the knees - as a result of Grover's? I do not remember such swelling as a major feature of comments about Grover's. I mention this as I was diagnosed with Venous Insufficiency as a cause of the swelling but there seemed to be no clinical test support for this so the swelling was blamed on Grovers' . Can this be true?

REPLY

I found that zinc oxide in the form of Desitin is excellent for Grover’s rash under the breasts. Clean and dry the area well before applying the paste. It forms a moisture barrier, keeping the area sweat and itch free.

REPLY
@bjwilliams

I found that zinc oxide in the form of Desitin is excellent for Grover’s rash under the breasts. Clean and dry the area well before applying the paste. It forms a moisture barrier, keeping the area sweat and itch free.

Jump to this post

If the smell of the Desitin or store-brand Desitin ever gets annoying, try Triple Paste instead. It doesn't have that smell that comes from the fish oil. It costs a bit more, but a little goes a long way. Could just be me that is particularly attuned to the fishy smell and no one else is bothered.

REPLY

I was diagnosed with Grover's about 10 years ago. The itching is insane.
I have fewer lesions these days, but a good sweat still often brings on a couple of new ones.
I've found that decolorized topical iodine makes the spots go away faster. The red stuff didn't work, so I wonder if it is the ammonia more than the iodine that makes it work???
And Triple Paste zinc ointment applied after the iodine is fully soaked in and dried helps too. Triple Paste is my favorite brand since I find the others smell fishy.
I think taking goodly doses of thiamine and riboflavin has helped a lot, though I wasn't aimed at the Grover's in taking those.

REPLY
@yess

Has anyone had serious swelling of the lower legs - from and including the knees - as a result of Grover's? I do not remember such swelling as a major feature of comments about Grover's. I mention this as I was diagnosed with Venous Insufficiency as a cause of the swelling but there seemed to be no clinical test support for this so the swelling was blamed on Grovers' . Can this be true?

Jump to this post

yess: I too have both Grovers & leg swelling. I was also told I have VI. Had a procedure about 5 weeks ago for the swelling/redness. No swelling since, but redness & ITCH still remains. Was hoping procedure would cure this. Not so far. Also have same issue with other (right) leg. I believe your diagnosis is correct, as I have had NO swelling in treated leg.

REPLY
@woody92354

yess: I too have both Grovers & leg swelling. I was also told I have VI. Had a procedure about 5 weeks ago for the swelling/redness. No swelling since, but redness & ITCH still remains. Was hoping procedure would cure this. Not so far. Also have same issue with other (right) leg. I believe your diagnosis is correct, as I have had NO swelling in treated leg.

Jump to this post

Thank you for your comment. I had a meeting with my dermatologist yesterday. He said the leg swelling was not likely a result of Grovers, directly, at all, but very likely a result of the Kenalog shots I was taking to fight Grovers - exacerbating an underlying predisposition to VI. That makes sense to me, I think. I intend to stop the Kenalog shots. I hope that works. Time will tell.

REPLY
@yess

Thank you for your comment. I had a meeting with my dermatologist yesterday. He said the leg swelling was not likely a result of Grovers, directly, at all, but very likely a result of the Kenalog shots I was taking to fight Grovers - exacerbating an underlying predisposition to VI. That makes sense to me, I think. I intend to stop the Kenalog shots. I hope that works. Time will tell.

Jump to this post

yess: Just wanted to mention, there are TONS of great video's on YouTube. You can find out just about everything on any topic. Grover's, VI, it's all there to soak up/in. Good Luck to you.

REPLY
@southerngirlatheart

Been lurking around reading everyone's posts for almost a year now and finally posting.

I am a 54 year old female. I was diagnosed with GD in Aug 2022 by my dermatologist. I had originally thought it might be a form of chemo rash that I had gone through a couple of times between Oct 2021 - April 2022 but the usual drugs for chemo rash did not work. My GP was perplexed and advised I see a dermatologist after hydroxyzine and creams did not work. My new dermatologist asked me lots of questions and looked at all of my bumps, scratches, and bruising(from intense scratching) and diagnosed me with GD. She seemed confident in her diagnosis without a biopsy.

She prescribed steroid creams, hydroxyzine for nights, and up to 4 zyrtec for daytime. It helped but was still having recurrence/flares that drove me nuts. I was also told to use unscented moisturizing soap like Dove or Oil of Olay and to stay cool as heat and especially sweating was a huge trigger. I also started using sunflower seed oil after my showers as I had read on this thread that it helped. I also tried several different types of creams to no avail.

My dermatologist wanted me to try Dupixent but I declined as I had read of some concerning side effects. I asked about photo therapy and she advised against it for me because I have very fair skin, a family history of skin cancer and I am a cancer survivor with treatment that included radiation. She said my skin cancer risk was too high. After another flare-up, she asked if I would like to try Adbry as an off-label treatment of GD as she had read reports of other GD patients having success using it. Adbry is a biologic injection developed to treat moderate to severe atopic dermatitis.

I started with loading doses of Adbry in January at the doctor's office and I am now on maintenance doses of two injections every other week. The suggested maintenance is a monthly double injection but because my symptoms start to appear around the 2 week mark, she is keeping me at every other week.

It has been a godsend. No more heavy itching resulting in scratches and bruising. A few days before my next dosage, I sometimes get a little itching under my breasts or in the creases between my upper thighs and torso or around my armpits as that is where my skin "stays hot" but it isn't super intense like before.

My insurance company denied the drug 3 times but luckily Adbry put me in their bridge program which allows me to continue receiving the drug at no cost for 2 years. I will be covered under a new health insurance company next month but my dermatologist said she would not seek drug approval again until a few months before the bridge program runs out around March of 2025ish.....I think. (The original doses were free samples so I cannot remember when the actual bridge started.)

Luckily, I have had no side effects other than accidently puncturing a vein a few times when self injecting into my belly or thighs which is really just user error...lol Hopefully, some of you here on this board can inquire about this drug with your doctor to see if it might help you as well. I know many prefer a more homeopathic treatment but I thought I would tell of my experience as well if it could help others. I considered doing the cilantro smoothies but I knew I would have trouble maintaining it.

I do wonder, as well, if it's related to heavy metals as one of my chemo drugs contained platinum.

Best wishes to all of you (:

Jump to this post

I don't know your circumstances pertaining to your access to fresh cilantro, but most grocery stores have home delivery. I also learned how to keep it fresh for at least 6 days in the frig and if I bought excess I would wash, dry and place in indiviual portions in the freezer, the fresh frozen worked just as well for me. Sometimes cilantro can look tired even in the best of grocery stores, but even with home delivery I image you could get a refund if you find it unacceptable.
If you are concerned about heavy metals in your blood based on your chemo, perhaps your insurance will justify medical blood chelation to remove heavy metals by filtering your blood.
The theory is that cilantro and other herbs can remove heavy metals, but perhaps there is also something else in these herbs helping some of us go into remission.

REPLY
@yess

Thank you for your comment. I had a meeting with my dermatologist yesterday. He said the leg swelling was not likely a result of Grovers, directly, at all, but very likely a result of the Kenalog shots I was taking to fight Grovers - exacerbating an underlying predisposition to VI. That makes sense to me, I think. I intend to stop the Kenalog shots. I hope that works. Time will tell.

Jump to this post

I was given annual Kenalog 40 shots to control my internal inflamation. This shot was a miracle for about 10 months, helped dramatically with the burning, zapping, stinging, eczema inside my skin, maybe as a result of one of my other forms of eczema- ACD, however it did nothing for my GD. No steroid, topical or other treatment brought any relief for the 4 years I lived with GD.
I was able to give up my annual Kenalog 40 corticosteroid shots in 2018 because I gave up processed sugar and reduced natural sugars. Today clear of all forms of eczema, skin has totally healed everywhere.

REPLY
@gardeningjunkie

I don't know your circumstances pertaining to your access to fresh cilantro, but most grocery stores have home delivery. I also learned how to keep it fresh for at least 6 days in the frig and if I bought excess I would wash, dry and place in indiviual portions in the freezer, the fresh frozen worked just as well for me. Sometimes cilantro can look tired even in the best of grocery stores, but even with home delivery I image you could get a refund if you find it unacceptable.
If you are concerned about heavy metals in your blood based on your chemo, perhaps your insurance will justify medical blood chelation to remove heavy metals by filtering your blood.
The theory is that cilantro and other herbs can remove heavy metals, but perhaps there is also something else in these herbs helping some of us go into remission.

Jump to this post

I haven't gone down the cilantro smoothie route as I know I wouldn't keep up with it on a daily basis. If my Adbry injections stop working or if my insurance doesn't approve them before my bridge program runs out, I may look into the chelation.

Luckily, I do eat a fair amount of cilantro given I have a love of Mexican cuisine. It's got to help a little 🙂

REPLY
Please sign in or register to post a reply.