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?

@gardeningjunkie

The package says start with 1-2 tablets per serving, increasing to 10 tablets over time. 10 tablets is 2grams.
I think that is simply the weight of the tiny little 10 tablets.
I take about 10 daily with a meal and never noticed any unpleasant side effects. As a group we all varied the amount of cilantro in our smoothies, I don't know of any exact recommended medical dose, we are basically experimenting with ourselves.
Even though I stopped the cilantro smoothies on a daily basis I still take the chlorella/spirulina, it's so easy.

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First package just arrived. Will slowly build up to the recommended 10/day. Thanks much

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Has anyone ever been prescribed Ammonium Lac Lotion? My GD is spreading, but it’s only spreading on one side of my body, which I find really strange. Does the disease tend to “run it’s course”? That’s what my dermatologist told me. The derm said that the rash does eventually go away, it just takes time. I’m really giving up hope. I’ve tried everything

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@chickensoup1

Has anyone ever been prescribed Ammonium Lac Lotion? My GD is spreading, but it’s only spreading on one side of my body, which I find really strange. Does the disease tend to “run it’s course”? That’s what my dermatologist told me. The derm said that the rash does eventually go away, it just takes time. I’m really giving up hope. I’ve tried everything

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Never heard of any one using it. Unfortunately, from my perspective, your doctor is mistaken, as so many others are. I have had GD now for at least three years. Still waiting, as others on this site, for it to run it's course. Have you done the Cilantro smoothies yet ? Most people find them to be pretty effective. I did them for over two years with pretty good success. I now do the Cilantro oil which also proves to be about as effective. If you go back and read the past blogs on this site you will understand that each person suffers this miserable disease differently. Secondly you will find that doctors are almost completely in the dark about GD and that your best prescriptions are found here, given by people who actually have the disease and have done, and continue to do, their research. It is horribly frustrating, but you do not suffer alone, for what that's worth. F/B also has a GD group. Just don't give up hope.

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@chickensoup1

Has anyone ever been prescribed Ammonium Lac Lotion? My GD is spreading, but it’s only spreading on one side of my body, which I find really strange. Does the disease tend to “run it’s course”? That’s what my dermatologist told me. The derm said that the rash does eventually go away, it just takes time. I’m really giving up hope. I’ve tried everything

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As was stated well by @nodgabnoj , there is no one-size-fits-all pattern to Grover's, and if your derm doc said that it will eventually go away, you need to find a new derm doc because it doesn't eventually go away in some people. Unfortunately, I am one of those people and I've had it for about 15 years. Try the cilantro smoothies or the cilantro drops made by Herb Pharm and available on Amazon. I'm on the drops and they have noticeably helped, but the disease is tough and hangs on. There is far more anecdotal evidence for the efficacy of the smoothies made with fresh cilantro, so I advise trying that first if you can tolerate going to a bit more trouble. Also, I advise going back to this point on this forum and start reading the posts from there. Good luck!
https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878

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I noticed some recent questions about Dupixent, so I might as well provide an update:

I have been administering Dupixent injections every two weeks since June 28th of this year after my dermatologist read a research article about it helping GD. I just recently had a follow-up appointment with him.

I do not feel like the Dupixent is helping, but he feels that it is. My doctor claims I am roughly 75% "cleared" – but his idea of cleared and my idea of cleared appear to be two different things. He's focused more on additional outbreaks/spots, whereas I'm more focusing on existing spots going away and the appearance of the rash disappearing. He feels this will take much, much longer to happen. I do get new spots showing up occasionally, but the outbreaks are not as bad as they were back in the summer.

He did show me a photo from back in June and in comparison to now, it does appear to be less red and inflamed – but still not where I would want things to be.

Anyway, he advised that I continue taking bi-weekly injections (they keep giving me samples to use) and will follow-up with him again in January.

I am not taking anything else at the moment. With Dupixent, my itching is minimal, additional outbreaks are also minimal, but it's taking a very long time for anything to actually heal.

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Thanks for the update! You can probably accomplish the same thing by doing the cilantro smoothies or taking the drops, but maybe you have already tried that. My experience with the drops is basically the same as you are describing with the Dupixent…better but far from perfect.

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@gardeningjunkie

You should research the product you are buying. Contact the company. Checkout what the chemicals are added, there is no industry standard for which chemicals are added, it's up to the company. You can look up the chemical added on the internet for allergic or toxic reactions. Personally I have too many allergies to consider UVA/UVB clothing, not only to chemicals but to the fibers in those stretchy sun cover coverups. If I wear a cover up it's a tight weave cotton. Yes if it gets wet it's heavy, but it's also cooling when wet. Glamourous it is not.

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Do you remember a link I had for the fabric industry? I cannot find it? Two weeks ago blood was drawn for mercury poisoning. They dropped the ball. Next week I am going to my MD with fabric industry info on toxins/heavy metals used in dark dyes. Ususlly extra dye is used for dark colors. You have seen mens underware comout pink from a sweat shirt. help me did out link.

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I haven’t posted since August 2021 when all was well with my Grovers. I mentioned that I had contracted GCA which put me on high doses of Prednisone beginning September 2020. The Prednisone led me down a dark alley of side effects and the latest is Avascular Necrosis of the hips (the bone ball of the femur, where it attaches to the hip, dies from lack of blood supply) so I have been pretty much sitting in a recliner to ease the pain while I wait for Ortho appointment. I walk with a walker. Needless to say, all the sitting has triggered my Grover’s again and this time it is also on my back. This began about a month ago and My Derm said it definitely was Grover’s. I began the daily cilantro smoothies, applied some Triamcinolone, tried Benadryl topical, Benadryl oral, and Gold Bond Medicated Powder. Nothing is helping this time. I reread some of the earlier posts and remembered to add the Chlorella. I also just ordered the cilantro drops today. I know what happened to me. I had been fooled into thinking I could stop the cilantro (I hate the taste). I wore synthetic material next to my skin, BAD BAD. The pressure from my bra left marks. (I had gained 40 pounds from the Prednisone and it is very hard to lose when I cannot move around). This meant my waists were also tighter. The perfect storm was brewing but I was too concerned with all my other side effects to think about Grovers. So here I am now. I found the Vanicream soap and lotion in the linen closet, am wearing only cotton next to my skin, and eliminating sulfites. (I had been eating onions, mushrooms and Brussel sprouts, forgetting they were bad.) This outbreak, 4 weeks in, is worse than the first time as it is now also on my back and extends down to my groin area and along both sides in addition to the front of my torso. One small dot can itch/burn/hurt as much as a cluster and I have multiple areas of both. I will never again become complacent about Grovers. I am pleased to see that gardeningjunkie is still helping others with great advice and I am grateful to kissmass1 and frogger for their helpful advice earlier in my game. I have found that an ice pack wrapped in a cotton pillowcase has helped my back at times. I now have 3 rare diseases, Grover’s, GCA and HLRCC (with very itchy leiomyomas). The first two are autoimmune and the last results from a genetic mutation. It is difficult for me to sit upright so I don’t spend much time on my computer, sad to say. The reason I am posting this is to say never become complacent about Grovers. It can come back worse than ever. Oh sigh, sigh, and double sigh!

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MariannJ- I am so very sorry about your GD symtoms returning. Yes sigh, sigh and double sigh. You, like the others you just mentioned, were part of our little group experimenting with cilantro over 3 years ago, so I feel a comraderie with you. Like you I have stopped regular use of cilantro. I make a smoothie with it about once a month or two now. My therory was that since cilantro is a heavy metal detox, consuming it for 6 months removed my heavy metals which my 70 year old body had accumulated.
Clearly, with your relapse, we must face the fact that this truly is a chronic disease.
There does seem to be a relationship of outbreaks after prolonged bed rest or in your case long periods of sitting, putting pressure on the back. I had been laid up for weeks following 1 week in intensive care, in an induced coma flat on my back and unable to move, then bed rest for several weeks. Of course most folks do fine laying on their back for long periods, but those of us with GD have something else going on to have it break out with certain triggers. My saving grace with GD when active was that my sides were clear, so I could lay on my side. Of course laying flat either on my stomach or back and leaning back in a sitting postition was impossible and I know how your back aches not getting any relief leaning back in a chair.
I reintroduce heavy metals because I occasionally eat seafood, just few days ago ate a giant bowl of mussels which I've read has severly high concentrations of heavy metals.
I do appreciate your warning and will start with the smoothies again, about once a week.
Right now my skin is totally healed, it took a long time to feel normal, about a year after the scabs fell off. As most know, even when GD is inactive the scabs can hang on for almost a year. I can tolerate a massage, friction, high water pressure and heat in the shower.
I very much appreciate your warning. Yes I keep posting on this site hoping to Inspire others to give cilantro a shot. Surprisingly some resist because like most of us they find the taste offensive. I try to tell them the taste becomes less distasteful in time, but many just won't give it a try. We both know we must be miserable to give it a try.
I so hope you show improvement and go into remission and let us know of your progress.

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@grovercleveland

Do you remember a link I had for the fabric industry? I cannot find it? Two weeks ago blood was drawn for mercury poisoning. They dropped the ball. Next week I am going to my MD with fabric industry info on toxins/heavy metals used in dark dyes. Ususlly extra dye is used for dark colors. You have seen mens underware comout pink from a sweat shirt. help me did out link.

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groverclevland- I didn't make a note of your link. In truth that is because I never had luck getting specific information from manufacturers about the processing elements. Yes they know if it is cotton or polyester, but not the prosessing elements. I don't have the blue dye allergy, but I do a severe allergy to an element in rubber, Mercaptobenzothiazole. It is one of 2 elements in rubber used to blend materials like poly/cotton, nylon, elastics and more. It is actually the lesser used element, yet here's the problem- the maker of the clothing has no idea what elements were used in the fabric processing. Most all fabric comes from China, gone are the days of American fabric manufactures. So even if the product is made in the USA, the material normally comes from overseas. I simply have to avoid all elastics for example while some may be safe for me. My misery is so great I don't take a chance.
I hope your blood draw will test for all metals. With my blood testing I learned I was allergic to 5 metals, yet this wasn't a test for mercury, it was a test for the metal elements in a knee replacement.
Mercury is not the only heavy metal. I think that is why the cilantro worked for me because it is a heavy metal detox.
Are you allergic to Blue Dye? This is a common allergen and most of us get exposed wearing denim.
Is your back clear enought for a 5 Day Patch Test for Blue Dye? Testing is still iffy. I've been patch tested twice with panels of about 80, yet each time the patch test showed no metal allergens. Yet the blood test showed postive allergies to 5 which I still don't have an medical explaination for the differences. Nickle is a common allergy, which I knew I had because of nickle in cheap pierced earring studs. My pieced ears will get red and swollen and turn black inside the hole. Yet gold and stainless cause no reaction. Still nickle didn't react on my patch test, yet on a scale of 1-3, I tested at a 2 or moderately allergic to nickle on the blood test. I'm assuming the blood test is more accurate.
I hope you learn something.

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@mariannj

I haven’t posted since August 2021 when all was well with my Grovers. I mentioned that I had contracted GCA which put me on high doses of Prednisone beginning September 2020. The Prednisone led me down a dark alley of side effects and the latest is Avascular Necrosis of the hips (the bone ball of the femur, where it attaches to the hip, dies from lack of blood supply) so I have been pretty much sitting in a recliner to ease the pain while I wait for Ortho appointment. I walk with a walker. Needless to say, all the sitting has triggered my Grover’s again and this time it is also on my back. This began about a month ago and My Derm said it definitely was Grover’s. I began the daily cilantro smoothies, applied some Triamcinolone, tried Benadryl topical, Benadryl oral, and Gold Bond Medicated Powder. Nothing is helping this time. I reread some of the earlier posts and remembered to add the Chlorella. I also just ordered the cilantro drops today. I know what happened to me. I had been fooled into thinking I could stop the cilantro (I hate the taste). I wore synthetic material next to my skin, BAD BAD. The pressure from my bra left marks. (I had gained 40 pounds from the Prednisone and it is very hard to lose when I cannot move around). This meant my waists were also tighter. The perfect storm was brewing but I was too concerned with all my other side effects to think about Grovers. So here I am now. I found the Vanicream soap and lotion in the linen closet, am wearing only cotton next to my skin, and eliminating sulfites. (I had been eating onions, mushrooms and Brussel sprouts, forgetting they were bad.) This outbreak, 4 weeks in, is worse than the first time as it is now also on my back and extends down to my groin area and along both sides in addition to the front of my torso. One small dot can itch/burn/hurt as much as a cluster and I have multiple areas of both. I will never again become complacent about Grovers. I am pleased to see that gardeningjunkie is still helping others with great advice and I am grateful to kissmass1 and frogger for their helpful advice earlier in my game. I have found that an ice pack wrapped in a cotton pillowcase has helped my back at times. I now have 3 rare diseases, Grover’s, GCA and HLRCC (with very itchy leiomyomas). The first two are autoimmune and the last results from a genetic mutation. It is difficult for me to sit upright so I don’t spend much time on my computer, sad to say. The reason I am posting this is to say never become complacent about Grovers. It can come back worse than ever. Oh sigh, sigh, and double sigh!

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Very sorry to hear about your unfortunate situation.

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@gardeningjunkie

groverclevland- I didn't make a note of your link. In truth that is because I never had luck getting specific information from manufacturers about the processing elements. Yes they know if it is cotton or polyester, but not the prosessing elements. I don't have the blue dye allergy, but I do a severe allergy to an element in rubber, Mercaptobenzothiazole. It is one of 2 elements in rubber used to blend materials like poly/cotton, nylon, elastics and more. It is actually the lesser used element, yet here's the problem- the maker of the clothing has no idea what elements were used in the fabric processing. Most all fabric comes from China, gone are the days of American fabric manufactures. So even if the product is made in the USA, the material normally comes from overseas. I simply have to avoid all elastics for example while some may be safe for me. My misery is so great I don't take a chance.
I hope your blood draw will test for all metals. With my blood testing I learned I was allergic to 5 metals, yet this wasn't a test for mercury, it was a test for the metal elements in a knee replacement.
Mercury is not the only heavy metal. I think that is why the cilantro worked for me because it is a heavy metal detox.
Are you allergic to Blue Dye? This is a common allergen and most of us get exposed wearing denim.
Is your back clear enought for a 5 Day Patch Test for Blue Dye? Testing is still iffy. I've been patch tested twice with panels of about 80, yet each time the patch test showed no metal allergens. Yet the blood test showed postive allergies to 5 which I still don't have an medical explaination for the differences. Nickle is a common allergy, which I knew I had because of nickle in cheap pierced earring studs. My pieced ears will get red and swollen and turn black inside the hole. Yet gold and stainless cause no reaction. Still nickle didn't react on my patch test, yet on a scale of 1-3, I tested at a 2 or moderately allergic to nickle on the blood test. I'm assuming the blood test is more accurate.
I hope you learn something.

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First a question for you:
Getting joybeds.com organic mattress full size for $1200. Reviews say it really is cool. Versus the other mattress sellers thjat say cool but have foam. How can foam actually be cool?
Yesterday I had a painful visible blister on back. Suspender's friction did it. Last night I put Tacrolimus on it. Today no pain. Friction is the killer.
Here is a good tip. On my shoulder I had the makings of a blister. Bandaid plus Tacrolimus. I forgot about it. A week later I noticed bandaid. Took it off. Wow perfectly clear skin.
My theory; Bandaid prevented friction.
Therefore it is my new treatment for bad blisters. Plus the ointment did not rub off and kept doing its job.

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