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?

@suecee

Hi everyone. I am new to this forum. About a month ago I was diagnosed (after punch biopsy) with “probably” Grovers disease. I love that word probably. Mine started on my ear and quickly went to the back of my head. Went to the dermatologist no biopsy yet who gave me fluticasone cream for body and clobetesol topical solution for my head. Then it showed up On the top of my leg. I used the creams for a few weeks never really helping and then the bloom appeared on my back and on my chest. That’s when I had the biopsy’s.
I then received a prescription of halobetasol ointment. All these chemicals being rubbed into my skin. Did the 6 day steroid pack, felt a bit better. Came back with a vengeance. Now I’m on minocycline which is helping a great deal.its been 2 weeks and my Rx is for 3 months. I use charcoal soap, Sarna cream and Gold Bond exema cream. Last October I had an allergic reaction to a med which was an NSAID that sent me to ER. Reveived a shot of solumedrol. About 2 weeks later I began with hives. And boy I do mean hives. They were huge. Allergist gave me antihistamines. It was a tough winter for me. I had 2 colds and then bronchitis. The reason I’m telling you this is because I had a low grade temperature for months. I wonder if this caused the breakdown of my skin. Daily I feel very warm then I get a chill (way beyond menopause).
My new normal consists of a plethora of antihistamines and creams. A fan above me and one beside my bed. No underwear or bra as often as I can and alot of cotton. Would love to try the cilantro but I have a clotting factor so too much would not be good for me.
Thanks for reading.

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I personally haven't read about Grover's in the locations you have mentioned. Perhaps you have another form or forms of eczema. Go to dermnetnz.org and go to their eczema site and search though all the forms of eczema. Look at the photos of Grover's, it truly seems yours doesn't fit the profile. Yet as I have 3 forms, with Grover's as one, you could have other forms of eczema which is not uncommon.
Until my cilantro smoothies, daily, no PX treatment helped me. An outbreak had to run it's course. My first outbreak lasted 1 year and then subsequent outbreaks were less severe (still miserable) but timing was 6 months on and 6 months off. One month into my latest outbreak beginning in mid Feb this year, I read about cilantro on this site, started a daily smoothy and within a week it stopped progressing and slowly started healing. Now 4 months later the last scabs are almost all gone, yet after the first week on treatment the itching was lessened and after a month almost gone. Yet it was in the beginning stage of an outbreak. Best of all with cilantro I never got the deep pain.

So do your homework with dermnetnz.org, study Grover's and other forms that have rashes that look like yours (great photos on this site) and unless you have a reason why cilantro won't work for you, just do it and chug it down.

Read this discussion since the beginning and learn how much we use, how often to drink it, tips on storing it and so on.

Also go to earthclinic and read about cilantro for Grover's. From what I have read from other bloggers with Grover's, about 50% or more of us are helped. Frogger and I are 2 of the lucky ones. Also have read cilantro is a heavy metal detox, but still have no idea why it has helped me so much.
.

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@frogger

I recommend a biopsy for Grover’s. My dermatologist said only way to find out. Only after biopsy did I begin my treatment. And cilantro is ONLY thing that will stop the horrible itch and outbreak. There’s a lot on here about cilantro. I doubted it until I started and now am a believer.

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Hello. I’ve had the punch biopsies. Are you saying there is a specific test for Grover’s??

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@gardeningjunkie

I personally haven't read about Grover's in the locations you have mentioned. Perhaps you have another form or forms of eczema. Go to dermnetnz.org and go to their eczema site and search though all the forms of eczema. Look at the photos of Grover's, it truly seems yours doesn't fit the profile. Yet as I have 3 forms, with Grover's as one, you could have other forms of eczema which is not uncommon.
Until my cilantro smoothies, daily, no PX treatment helped me. An outbreak had to run it's course. My first outbreak lasted 1 year and then subsequent outbreaks were less severe (still miserable) but timing was 6 months on and 6 months off. One month into my latest outbreak beginning in mid Feb this year, I read about cilantro on this site, started a daily smoothy and within a week it stopped progressing and slowly started healing. Now 4 months later the last scabs are almost all gone, yet after the first week on treatment the itching was lessened and after a month almost gone. Yet it was in the beginning stage of an outbreak. Best of all with cilantro I never got the deep pain.

So do your homework with dermnetnz.org, study Grover's and other forms that have rashes that look like yours (great photos on this site) and unless you have a reason why cilantro won't work for you, just do it and chug it down.

Read this discussion since the beginning and learn how much we use, how often to drink it, tips on storing it and so on.

Also go to earthclinic and read about cilantro for Grover's. From what I have read from other bloggers with Grover's, about 50% or more of us are helped. Frogger and I are 2 of the lucky ones. Also have read cilantro is a heavy metal detox, but still have no idea why it has helped me so much.
.

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Thank you. I wish I could try the cilantro. Since I’m allergic to NSAIDS I cannot do my daily aspirin regime (for the blood clotting factor) and cilantro can thicken the blood. I’ve just purchased vitamins E and C. Thinking these are good for the skin. Grasping at straws here. I will check the sites you suggested. Thank you again.

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@suecee

Hello. I’ve had the punch biopsies. Are you saying there is a specific test for Grover’s??

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Yes. My pathology report came back saying I had Grover’s. The lab tested for several things.

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Thanks. I will call derm this morning.

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@suecee

Thanks. I will call derm this morning.

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My Dermatologist from Mayo prescribed Triamcinolone Acidtonide cream 1%. I've had awful rashes, wide spread since 2013. Thankfully, they come and go! But sometimes last for months. Last skin biopsy a year ago, shows resemblance to Grovers disease, but I have MGUS, which may contribute to on set. Usually I'll get some pop up rashes, which I get under control with the cream. If they're wide spread and I'm feeling sick from them, chills, exhaustion, tormenting itching, and lack of sleep, I'll apply the prescription cream, then wear a wet cotton tshirt (wet wraps), for about an hour, all recommended from my Drs, and take Hydroxyzine, and allergy pills. Side effects are miserable, but itching subsides. No hot water in showers, and told to use only Vanicream soap and cream. I do try my best to avoid lengthy sweats, but difficult here in Florida. As for Cilantro, I've tried eating bunches in a salad, but I honestly can't say it helped…but I will try it again should I experience a wide spread. Hope you all find steady relief!!

Liked by MariannJ

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Do try to detox daily with fresh cilantro, stems and leaves until you notice improvement. Some freeze the fresh and say it still works. Study our blog for other storage tips. I believe you will be more successful following though if you make a smoothly and simply chug it down without breathing to minimize the taste. Personally I couldn't face a cilantro salad. This treatment has been surprisingly success for me, still GD free after beginning in Feb I have begun reducing smoothie to every other day.It didn't take long to notice my new weeks old breakout was not progessing, just a week, yet it's taken 4 months for 98% of the scabs to drop off. I believe these residual papuales will always be with me, but no itching, burning or pain. I am even gardening in the heat, but making myself come in by 11 am.
You do know that Triamcinolone is a strong steroid.Read up on dangers if you haven't already. You mentioned you might have a variation of GD so it's helping, but for most of us with GD steroids don't help or if they do it's temporary and it comes back with a vengeance. Calciptreine Cream did help a bit in slowing the progression.

Liked by dazlin, MariannJ

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@dazlin

My Dermatologist from Mayo prescribed Triamcinolone Acidtonide cream 1%. I've had awful rashes, wide spread since 2013. Thankfully, they come and go! But sometimes last for months. Last skin biopsy a year ago, shows resemblance to Grovers disease, but I have MGUS, which may contribute to on set. Usually I'll get some pop up rashes, which I get under control with the cream. If they're wide spread and I'm feeling sick from them, chills, exhaustion, tormenting itching, and lack of sleep, I'll apply the prescription cream, then wear a wet cotton tshirt (wet wraps), for about an hour, all recommended from my Drs, and take Hydroxyzine, and allergy pills. Side effects are miserable, but itching subsides. No hot water in showers, and told to use only Vanicream soap and cream. I do try my best to avoid lengthy sweats, but difficult here in Florida. As for Cilantro, I've tried eating bunches in a salad, but I honestly can't say it helped…but I will try it again should I experience a wide spread. Hope you all find steady relief!!

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@dazlin My dermatologist also prescribed triamcinolone in the beginning which I used to 10 day to temper the initial AWFUL stuff. Then I switched to cilantro in smoothies. Have been on them since January (ish, can't remember exactly). No more itching or outbreaks. Afraid to stop the cilantro. However, the benefits of the cilantro have been more than Grover's aid. My health is improved. All that fruit in the smoothie each morning aids digestion. I also add protein powder. My smoothie is almond milk, frozen banana, frozen strawberries, sometimes blueberries or peaches and the cilantro. One quarter bundle each time for me. And I HATE THE TASTE OF CILANTRO but it is expertly camouflaged in the smoothie. I freeze the quarter bundles.

Liked by dazlin

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My thoughts exactly! Mine began January 1 and the smoothies have done the trick. Do you take any vitamins to supplement the smoothies? I’m unsure whether to add vitamins to my daily routine.

Liked by MariannJ

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@frogger I try to remember to take Biotin, Occuvite for eyes and chlorella ( look up health benefits) . I always take Vitamin C, Vitamin D, CoQ10 and Mega Red fish oil. I probably don't need any of these but my heart is great and I am healthy. Don't ever get colds (fingers are crossed.)

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Hi everyone! It seems skin rashes are a tricky thing. As I mentioned before, my Grover’s seems to be at bay since starting cilantro. But, a couple months ago I began getting hive like rashes all over my body. The itching was similar, if not exact to my Grover’s but no red bumps, just a traveling itchy rash. My Dermatologists could not figure it out. I was not sure if it was Grover's related and Doctors could not tell me either. Again, I tried all the prescriptions they suggested. From steroids to Kenalog shots to various creams etc. nothing was working. So as we do, we read and research and scour the internet for answers. I came across a study that some doctors did on 9 Grover’s patients, and six of the nine found complete relief with Triple Antibiotic Ointment. So out of desperation (and since I had a tube in my medicine cabinet) I gave it a try. I applied to to my entire body. Within hours my rash was completely gone and has been for three days now. I will continue using it for the next few days and see if it continues. But I am SO happy to be itch and pain free again. It’s funny how non prescription remedies seem to be the most successful!. I’ll follow up and let you know how this new treatment works in the long run.
p.s. Thanks @gardeningjunkie for your continued support. https://www.mdedge.com/dermatology/article/67546/contact-dermatitis/antibiotic-ointment-treatment-grover-disease

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@kimass1

Hi everyone! It seems skin rashes are a tricky thing. As I mentioned before, my Grover’s seems to be at bay since starting cilantro. But, a couple months ago I began getting hive like rashes all over my body. The itching was similar, if not exact to my Grover’s but no red bumps, just a traveling itchy rash. My Dermatologists could not figure it out. I was not sure if it was Grover's related and Doctors could not tell me either. Again, I tried all the prescriptions they suggested. From steroids to Kenalog shots to various creams etc. nothing was working. So as we do, we read and research and scour the internet for answers. I came across a study that some doctors did on 9 Grover’s patients, and six of the nine found complete relief with Triple Antibiotic Ointment. So out of desperation (and since I had a tube in my medicine cabinet) I gave it a try. I applied to to my entire body. Within hours my rash was completely gone and has been for three days now. I will continue using it for the next few days and see if it continues. But I am SO happy to be itch and pain free again. It’s funny how non prescription remedies seem to be the most successful!. I’ll follow up and let you know how this new treatment works in the long run.
p.s. Thanks @gardeningjunkie for your continued support. https://www.mdedge.com/dermatology/article/67546/contact-dermatitis/antibiotic-ointment-treatment-grover-disease

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Thanks. The antibiotic ointment something we always have in the house. And I have an update too. As of July 1 I resumed my running. Grover’s started end of December. So far so good although it’s only been 3 days since first run. I take a cold shower immediately after morning run. Must exercise in morning as Texas heat is deadly. But hasn’t hit 100 yet.
Still have a lingering rash on hip and lower back but nothing like it was in January thru March. Cilantro is a mainstay in my morning routine.

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@frogger

Thanks. The antibiotic ointment something we always have in the house. And I have an update too. As of July 1 I resumed my running. Grover’s started end of December. So far so good although it’s only been 3 days since first run. I take a cold shower immediately after morning run. Must exercise in morning as Texas heat is deadly. But hasn’t hit 100 yet.
Still have a lingering rash on hip and lower back but nothing like it was in January thru March. Cilantro is a mainstay in my morning routine.

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When I started the cilantro I had a little lingering rash as well. It was mostly on my thighs hips and butt. But nothing too major. But then it started to get worse after a couple of months and started spreading all Over. Give the antibiotic ointment a try it may help you as well. Rash is gone for the most part just a little pinpoint itch here and there but I can totally deal with that.

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Please help me as I am writing up a report for both my dermatologists about our results using cilantro as a detox for our Grover's Disease. For me it has been wildly successful and from my reading on this site and Earth Clinic I believe it helps at least 50%. I am grateful to Kimass1 for sharing this information about cilantro as this is the first summer in years I am clear and able to participate in family outdoor activities and best of all sleep deeply. To be pain free is all because of her caring about the rest of us that's why I am writing this up for my doctors who never were able to control it with various prescription medicines and I want them to pass this information along to their other patients.
Please respond and tell me if you tried it and a brief history of your results. Also explain how you ingested the cilantro, if fresh, frozen or tablets or pills and how long you tried it.
I still make my fresh cilantro smoothly daily, only missing a few days in over 3 months. I began the approximately the first of April and it only took a few weeks to notice an improvement in my early stage breakout (normally my recurring breakouts last for 6 months) and then about 2 months for the papules to totally dry up and fall off, yet during that time my itching and pain were dramatically less than normal breakouts. I am 99% free of all scabs and have zero pain or itching today, even when I sweat! Water no longer hurts! No stinging and can lay on my back or lean back in a chair as I did before I got this disease. If I press hard on my back I can still feel some tiny under the skin bumps, not as many as I used to when clear, but I know they are just waiting for me to stop my cilantro. I believe that is because with GD our cellular structure is permanently changed.

Liked by MariannJ

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Had Grover’s since January 1 but biopsy in February made it official. Itching was so horrible that I could not sleep. Got on Mayo Clinic discussion group, found out about cilantro, began taking and it cleared up within 10 days.
I take cilantro by 2 methods. First is a cilantro, yogurt and orange juice smoothie every morning. Secondly I take a cilantro capsule three times per day.
For one 5 day period (on trip) I took only capsules and did not break out. After 6 months I am back to running in Texas heat. Have had small outbreak of red bumps on back but no pain, no itching at all. One of these days I’m going to try weaning myself off cilantro just to see if I break out but that’s several months down the road.

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