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?

@gardeningjunkie

I have read that some that take cilantro tablets do not get the same helpful results as using fresh or frozen. I have used the tablets for a few days when traveling. Until you start improving it seems better to use the fresh if possible.

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That is a liquid with a Dropper. I think I ordered it from the hallelujah diet company. Anyway, I am still drinking the fresh every day! Getting used to it😊.

Liked by MariannJ

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Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell me it's not part of Grover's but it started around the same time. I have been to allergists and had every test imaginable and am not allergic to ANYTHING. I have gone on the Auto Immune Solution Diet which is a REALLY restrictive elimination diet for a month..Basically just meat, veggies and fruit. No dairy, no sugar, no legumes, no alcohol, no caffeine, etc. It was awful and it did not change a thing! I have now been itching for over a year almost non stop. The red bumps and SEVERE itching went away after Cilantro in March, but the hives-like rash has remained (with the exception of the first month after cilantro kicked in) Now when I say hives-like, what I mean is that they look like hives (red patches with pale raised bumps) The difference for me is that there is ONE bump in each area that his WAY more itchy than the rest and causes the whole area to itch. If I scratch off the top layer of that one bump, it seems to help it go away faster. The top layer of that bump usually comes off pretty easily and no bleeding. It's weird and I only realized this could happen by accident. I was SO itchy one evening I scratched a little harder than normal and this happened. So now I do it almost every time a rash pops up. These hives travel. I could have them on my breast, armpit and stomach one hour, then they go away and pop up on my butt and back, or on my head and chest. There is no rhyme or reason. although it travels, it's constant. Some days better than the others, but it still would be nice to have an itch free day. Obviously I have found ways to "manage" it. But I am over it! I believe it's part of Grover's, but can't be sure because all my Doctors say it does not present like Grover's. I personally don't think they know MUCH about Grover's other than what is written in the literature. Which simply states it's "transient" and "goes away in 6 months to a year" I know this is not the case for almost everyone I have spoken to that has the disease. It lingers or keeps coming back. I think I have tried almost all prescription drugs offered for hives and GD and have asked for others not offered! None have worked. I am thinking of having another biopsy. Any suggestions?

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@kimass1

Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell me it's not part of Grover's but it started around the same time. I have been to allergists and had every test imaginable and am not allergic to ANYTHING. I have gone on the Auto Immune Solution Diet which is a REALLY restrictive elimination diet for a month..Basically just meat, veggies and fruit. No dairy, no sugar, no legumes, no alcohol, no caffeine, etc. It was awful and it did not change a thing! I have now been itching for over a year almost non stop. The red bumps and SEVERE itching went away after Cilantro in March, but the hives-like rash has remained (with the exception of the first month after cilantro kicked in) Now when I say hives-like, what I mean is that they look like hives (red patches with pale raised bumps) The difference for me is that there is ONE bump in each area that his WAY more itchy than the rest and causes the whole area to itch. If I scratch off the top layer of that one bump, it seems to help it go away faster. The top layer of that bump usually comes off pretty easily and no bleeding. It's weird and I only realized this could happen by accident. I was SO itchy one evening I scratched a little harder than normal and this happened. So now I do it almost every time a rash pops up. These hives travel. I could have them on my breast, armpit and stomach one hour, then they go away and pop up on my butt and back, or on my head and chest. There is no rhyme or reason. although it travels, it's constant. Some days better than the others, but it still would be nice to have an itch free day. Obviously I have found ways to "manage" it. But I am over it! I believe it's part of Grover's, but can't be sure because all my Doctors say it does not present like Grover's. I personally don't think they know MUCH about Grover's other than what is written in the literature. Which simply states it's "transient" and "goes away in 6 months to a year" I know this is not the case for almost everyone I have spoken to that has the disease. It lingers or keeps coming back. I think I have tried almost all prescription drugs offered for hives and GD and have asked for others not offered! None have worked. I am thinking of having another biopsy. Any suggestions?

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@kimass1 Have you had any new stress in your life, things that you are suppressing? I was actually in the derm's office this week for 6 month check up and he noticed some Grover remnants, which were not bothering me. In the meantime, I went through a very stressful hour involving a med alert call I received and which I could not do anything about. Within a few hours I had a new cluster of Grovers in an area not before covered. It began after I left the derm's office. This is my first outbreak since the initial one last January. I never stopped cilantro all this time. I just KNOW that the stress precipitated this outbreak because I was all hot and perspiring and quite upset. All worked out fine as far as the med alert was concerned. I applied triamcinolone cream to the area to control the itching and it seems to be working. I am only on day 3 but I thought this was the weirdest thing I had ever experienced since that particular area was clean as could be prior to the stressful event. My stress caused me to get very hot (possible blood pressure rise?) and my scalp was even wet. Rarely do i have such a reaction, but then again, I thought my husband was being transported to a hospital by paramedics and I was an hour away not knowing which hospital. It was a false alert and for that I am grateful. That is why I am asking about stress. Sometimes the stress can be more subtle.

Liked by kimass1

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@kimass1

Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell me it's not part of Grover's but it started around the same time. I have been to allergists and had every test imaginable and am not allergic to ANYTHING. I have gone on the Auto Immune Solution Diet which is a REALLY restrictive elimination diet for a month..Basically just meat, veggies and fruit. No dairy, no sugar, no legumes, no alcohol, no caffeine, etc. It was awful and it did not change a thing! I have now been itching for over a year almost non stop. The red bumps and SEVERE itching went away after Cilantro in March, but the hives-like rash has remained (with the exception of the first month after cilantro kicked in) Now when I say hives-like, what I mean is that they look like hives (red patches with pale raised bumps) The difference for me is that there is ONE bump in each area that his WAY more itchy than the rest and causes the whole area to itch. If I scratch off the top layer of that one bump, it seems to help it go away faster. The top layer of that bump usually comes off pretty easily and no bleeding. It's weird and I only realized this could happen by accident. I was SO itchy one evening I scratched a little harder than normal and this happened. So now I do it almost every time a rash pops up. These hives travel. I could have them on my breast, armpit and stomach one hour, then they go away and pop up on my butt and back, or on my head and chest. There is no rhyme or reason. although it travels, it's constant. Some days better than the others, but it still would be nice to have an itch free day. Obviously I have found ways to "manage" it. But I am over it! I believe it's part of Grover's, but can't be sure because all my Doctors say it does not present like Grover's. I personally don't think they know MUCH about Grover's other than what is written in the literature. Which simply states it's "transient" and "goes away in 6 months to a year" I know this is not the case for almost everyone I have spoken to that has the disease. It lingers or keeps coming back. I think I have tried almost all prescription drugs offered for hives and GD and have asked for others not offered! None have worked. I am thinking of having another biopsy. Any suggestions?

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I can offer you is sympathy but wish I could do more as what you are describing is not like any GD conditon I have heard of I wish there was a hospital dedicated to skin diseases like MD Anderson in Huston. You have to keep trying and another biopsy could help. From my experience biopsies have to be taken at the right stage of a breakout. My GD biopsy was negative. I was almost at the end of my initial GD breakout which lasted 1 year about 5 years ago when I went to a new derm who took one look and listened to my symptoms and immediately told me I had GD. Others treated it like my Allergic Contact Dermatitis, so of course nothing helped previously because basically no meds help with GD. Yet when she took a biopsy it came back negative. She told me at the time of the biopsy that for the GD biopsy to identify GD it needed to be in the active stage. Yes I had the clusters of classic rashes all over front and back torso, upper and lower but they were scabbing at the time of biopsy. All I can think of is for them to accurately find the GD it has to be a fresh active area. Also what is your biopsy testing for? Is it limiting the test to GD? Can they biopsy for hives, shingles or other skin conditions with the same biopsy. You could have multiple skin diseases and your doctors are limiting their ideas to GD.
You are one to study. Have you gone to the New Zealand Derm site, dermnetnz.org, a site which helped me identify one of my 3 forms (once again incorrectly treated as my original form of eczema by derms. Start with a blank slate and search their skin site for your symptoms, not assuming it is GD. This site has the best batch of photos of actual patients with the skin condition. You will find various appearances with each type, even GD as we know has variations, but if you search though the pages you may find a photo of hive like rashes like yours.
I though my GD might be coming back as my lower back in the center was itching, yet confused because upon closer inspection the itchy area was just one wildly itchy non healing bump! Nothing remarkable in appearance but it would not heal for at least 3 months. I could scratch of the scab once crusted to only have it return and never heal. It never had puss and didn't bleed but a bit, like you mentioned. My back in that area is still not smooth as I can feel a few little bumps, but they do not itch. I believe GD permanently has changed my skin layers. This one bump was so itchy it felt like if was dozens of GD papuales. I changed my gardening clothes from loose 100% cotton jeans, held up with a 100% leather belt (I'm not allergic to the 100% or the leather) to 100% cotton bib overalls. The belt and the jeans but pressure right at this bump and rubbed it when bending over. The overalls have zero pressure. I also broke down and used a steroid on the papuale. Steroids never helped with GD. Yet after eliminating pressure and adding a steroid after 2 weeks it was 60% better. Stopped steroid and still better, but scab is still there and will leave it alone this time. I think the friction irritated my GD damaged skin and this papuale may not be GD but simply weak skin. Now just minor non-troubling itch, yet it's not gone. I still make my cilantro smoothie and plan to for life. Still this doesn't account for your random hives, mine seems to be triggered by pressure and it was not a hive.
Your situation really sounds like an allergy the way it moves around in areas not normally associated with GD. Does it happen more if you go outside? I have a friend my age that just this year started getting hive like welts on her arms, legs, scalp, face and even unexposed areas after she gardens. It sure seems like allergies, but when she gardens she never leaves her patio or sidewalk, just reaching into flower pots or little flower beds. No dietary changes. Maybe it's in the air as she lives in a wooded area.
You helped so many of us with your input about cilantro and hope others on this site have ideas for you.

Liked by kimass1, MariannJ

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@mariannj

@kimass1 Have you had any new stress in your life, things that you are suppressing? I was actually in the derm's office this week for 6 month check up and he noticed some Grover remnants, which were not bothering me. In the meantime, I went through a very stressful hour involving a med alert call I received and which I could not do anything about. Within a few hours I had a new cluster of Grovers in an area not before covered. It began after I left the derm's office. This is my first outbreak since the initial one last January. I never stopped cilantro all this time. I just KNOW that the stress precipitated this outbreak because I was all hot and perspiring and quite upset. All worked out fine as far as the med alert was concerned. I applied triamcinolone cream to the area to control the itching and it seems to be working. I am only on day 3 but I thought this was the weirdest thing I had ever experienced since that particular area was clean as could be prior to the stressful event. My stress caused me to get very hot (possible blood pressure rise?) and my scalp was even wet. Rarely do i have such a reaction, but then again, I thought my husband was being transported to a hospital by paramedics and I was an hour away not knowing which hospital. It was a false alert and for that I am grateful. That is why I am asking about stress. Sometimes the stress can be more subtle.

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I agree about stress. At age 50 my health issues began along with 5 major stressful events that year. One permanent result was high blood pressure which has escalated and now 20 years later am maxed out on my dosage. Why I haven't had a stroke is amazing as I have spiked as high as 215/105. After several ER trips I now have the meds here at home to take if necessary. This year once again needing to increase my dose the doctor told me I was maxed out and recommended I take Valerian Root, the source of Valium, daily. OTC its normally sold as 500 mg, but I tried that and got an afternoon low, so after shopping harder found a 250 mg dose. I think I am calmer and no afternoon low, but far from feeling like a zombie. You cannot divide this tablet as it is a powder and the stinkiest substance on the planet earth. Smells like rancid foot odor even inside the tablet. I isolate the bottle (even the bottle stinks) in another thick and larger bottle and keep it under my sink. I have been able to cut one of my high dose pills in half. Some with less severe high BP report being able to give up BP meds altogether.
Your stress was a isolated event (and thank goodness a false alarm) so Valerian is unnecessary for you , but for others who have stress in their lives might consider trying it. I truly do not want to live on px tranquilizers. I am a naturally happy person and do not what these joy killers robbing me of the joy I feel- I have seen this in others.

Liked by MariannJ

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Hello Group, I have found this site and read through this whole long thread and am so happy I did. My story is long, but to sum it up, I began breaking out in a weird rash around Oct 2018. It seemed to flare up around my monthly period and I was also getting a cold sore at this time of the month as well. I went to multiple doctors and no one seemed that concerned or knew what it really was. I had two biopsy's and was told I had Darier's Disease….I did not think so. I began following a facebook page for Darier's and just did not feel like my symptoms were similar and so I kept seeking answers. Throughout all this time I continued to get worse and my rash never went away with any prescription meds the dermatologist gave me. It would eb and flow and seem to get better just to come right back. My dermatologist said my last resort would be to get on oral isotretenoin and when I could no longer physically and especially mentally handle the daily itching and red rash, in July I began isotretinoin. I am now 3 months down and while my rash has gone, the itching was still relentless. My itching was only on my neck and chest. I have no symptoms anywhere else. I still can't pinpoint why this all happened and it's still a daily struggle but I have also been on the cilantro smoothie path for over two weeks now and the itching is 90% gone! I have always had anxiety since college and this condition really hit me hard. I have gone on meds to treat the cold sores and have wondered if the meds caused the rash, been told by doctors No. I have also wondered if a flu shot I got last Oct could have caused it. I wonder if my hormones changing at 35 could have caused it…that's what is so hard not knowing what caused it to try and avoid it. It has taken me almost a year to heal physically and mentally and while it's still present, I am so worried to get off the isotretenoin and acyclovir in case it decides to flare up again. I am going on a cruise this Christmas and am also worried that a week without the cilantro smoothie may cause itching to return, but also just worried in general about whether I should keep on these meds until after the trip. I hope my healing lasts and this never comes back, but I am fully aware that this could be ongoing and at my age of 37 it is so scary. Thanks for listening and appreciate hearing others sucesses.

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@carrie14

Hello Group, I have found this site and read through this whole long thread and am so happy I did. My story is long, but to sum it up, I began breaking out in a weird rash around Oct 2018. It seemed to flare up around my monthly period and I was also getting a cold sore at this time of the month as well. I went to multiple doctors and no one seemed that concerned or knew what it really was. I had two biopsy's and was told I had Darier's Disease….I did not think so. I began following a facebook page for Darier's and just did not feel like my symptoms were similar and so I kept seeking answers. Throughout all this time I continued to get worse and my rash never went away with any prescription meds the dermatologist gave me. It would eb and flow and seem to get better just to come right back. My dermatologist said my last resort would be to get on oral isotretenoin and when I could no longer physically and especially mentally handle the daily itching and red rash, in July I began isotretinoin. I am now 3 months down and while my rash has gone, the itching was still relentless. My itching was only on my neck and chest. I have no symptoms anywhere else. I still can't pinpoint why this all happened and it's still a daily struggle but I have also been on the cilantro smoothie path for over two weeks now and the itching is 90% gone! I have always had anxiety since college and this condition really hit me hard. I have gone on meds to treat the cold sores and have wondered if the meds caused the rash, been told by doctors No. I have also wondered if a flu shot I got last Oct could have caused it. I wonder if my hormones changing at 35 could have caused it…that's what is so hard not knowing what caused it to try and avoid it. It has taken me almost a year to heal physically and mentally and while it's still present, I am so worried to get off the isotretenoin and acyclovir in case it decides to flare up again. I am going on a cruise this Christmas and am also worried that a week without the cilantro smoothie may cause itching to return, but also just worried in general about whether I should keep on these meds until after the trip. I hope my healing lasts and this never comes back, but I am fully aware that this could be ongoing and at my age of 37 it is so scary. Thanks for listening and appreciate hearing others sucesses.

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@carrie14 Cilantro also comes in supplements for traveling. You get them on the Internet. Interesting g that you mention ed hormones. My Grover's started when I stopped years of hormones.

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I have spent many days trying to go back and see what could have happened to cause this, but on my 35th birthday I woke up to a huge spider bite on my bottom. Fun right! I got on antibiotics for it and had no issues. After that, is when my skin issues started coming around my monthly cycle. Probably not related, but the rash and itch would start about a week before my period and then go away after. This went on for about a year until every month I would get a cold sore along with the itchy rash on my chest. That is when in Oct 2018 I began the constant rash and this whole situation started. I've read that you can get both cold sores and itchy rashes during the week before your period and that would be fine, if it went away! I am just curious if the cold sore meds I take caused anything….but if I stop taking them I get a cold sore immediately. I did buy the cilantro pills and plan to take them for a week next month to see if they keep the itch at away to prepare for my cruise. I'm hoping they do and then when I get home I can get back to smoothies.

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@mariannj

@carrie14 Cilantro also comes in supplements for traveling. You get them on the Internet. Interesting g that you mention ed hormones. My Grover's started when I stopped years of hormones.

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I took capsules I bought on Amazon on 5 day trip in June. All worked well although I probably took too many each day (5). I still take a couple each day.

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That's so good to hear. I will definitely take them on my trip. In more of my research I saw that GD can be induced by antiviral medications, and one of the medicines I started taking last year was an antiviral, which I still take. I know I will risk getting another cold sore but I am going to stop taking them and see how I feel.

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@carrie14

That's so good to hear. I will definitely take them on my trip. In more of my research I saw that GD can be induced by antiviral medications, and one of the medicines I started taking last year was an antiviral, which I still take. I know I will risk getting another cold sore but I am going to stop taking them and see how I feel.

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Carrie14 since the fresh cilantro is helping 90% (fantastic) why not keep taking it until the day you leave for your cruise because many report the capsules aren't effective for them. Although Frogger had good results taking the capsules he had been on the fresh for months. I believe it was just for the time of his trip he used the capsules then he went back on the fresh. Not sure maybe he will clarify that. He has mentioned he is in remission now not taking cilantro. I am too afraid to stop using, plus it is easy enough to do and I figure it won't cause any harm. It is a metal detox, so perhaps after taking it for a long period we are cleared of most of our metals and can handle doing without it until the metals build up again.
Could you share with us the source of the information about anti-viral meds inducing GD as I would like to read more about it. I have never read that before or taken anti-viral meds but if needed in the future that would be helpful information. I just had the adult strength flu shot last week without any reaction other than a mildly sore area at the site of the injection for 1 day.

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I am definitely going to continue with the smoothies everyday until I leave. I will take the pills while I am gone. The website for reference is GARD. The antiviral they mention is called Ribavirin and it's the same class of med as the Acyclovir I take. I had asked multiple doctors is there could be any correlation and they say no, but it's clearly written in literature that it can. Maybe I am that 1%….either way I am going to stop taking them and let my body adjust back to before I started and see. What do I have to lose? I may break out with a cold sore, but maybe not. I have decided to get the flu shot tomorrow and I think I will be fine from that.

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@carrie14

I am definitely going to continue with the smoothies everyday until I leave. I will take the pills while I am gone. The website for reference is GARD. The antiviral they mention is called Ribavirin and it's the same class of med as the Acyclovir I take. I had asked multiple doctors is there could be any correlation and they say no, but it's clearly written in literature that it can. Maybe I am that 1%….either way I am going to stop taking them and let my body adjust back to before I started and see. What do I have to lose? I may break out with a cold sore, but maybe not. I have decided to get the flu shot tomorrow and I think I will be fine from that.

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Hi @carrie14, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post the link to Genetic and Rare Diseases (GARD) Information Center for you.

Grover's Diseases https://rarediseases.info.nih.gov/diseases/6551/grovers-disease.

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@mariannj

@kimass1 Have you had any new stress in your life, things that you are suppressing? I was actually in the derm's office this week for 6 month check up and he noticed some Grover remnants, which were not bothering me. In the meantime, I went through a very stressful hour involving a med alert call I received and which I could not do anything about. Within a few hours I had a new cluster of Grovers in an area not before covered. It began after I left the derm's office. This is my first outbreak since the initial one last January. I never stopped cilantro all this time. I just KNOW that the stress precipitated this outbreak because I was all hot and perspiring and quite upset. All worked out fine as far as the med alert was concerned. I applied triamcinolone cream to the area to control the itching and it seems to be working. I am only on day 3 but I thought this was the weirdest thing I had ever experienced since that particular area was clean as could be prior to the stressful event. My stress caused me to get very hot (possible blood pressure rise?) and my scalp was even wet. Rarely do i have such a reaction, but then again, I thought my husband was being transported to a hospital by paramedics and I was an hour away not knowing which hospital. It was a false alert and for that I am grateful. That is why I am asking about stress. Sometimes the stress can be more subtle.

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No additional stress. But my life is pretty stressful raising a 2 year old at 56 years old!!

Liked by MariannJ

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Exhaustion can stress the body!

Liked by kimass1, MariannJ

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