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?

@mnitchke

Thanks for your reply. I am on Accutane 10 mg. which is a much lower dose than you were taking. I spoke with my Dermatologist yesterday and she doesn't want to increase the dosage yet pending lab tests in a few weeks(4) to see what effect it may have on my Liver. Meanwhile I am suffering from lack of sleep. irratability, poor personal thoughts, and more, not the least of which is constantly scratching some part of my body (Head, Neck, Chest,Arms, Legs, etc. etc.) I can't go more than 30 seconds without having to scratch.

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@mnitchke Because you mentioned "poor personal thoughts" I want to make you aware of the fact that Accutane can have the side effect of suicidal tendencies. I know this because of a personal experience with someone who took it for teen age acne and tried to overdose, unsuccessfully, thank goodness. A great deal of research was done and we found many teenagers were suicidal who were on Accutane and, when stopped, the tendencies disappeared. Everyone is wired differently so this is not true for all but if there is the slightest chance that you can react this way you should know it. We all care about you on this site and want to protect you and befriend you with our knowledge. You can try topical lidocaine, which is an anesthetic, slapping, which is better than scratching and of course the cilantro because you have nothing to lose and it will not harm you.
From the Internet: "While you (or your child) is taking Accutane, watch for any symptoms of depression, like:
Changes in mood and behavior.
Feeling unusually sad, angry, irritable, or aggressive.
Trouble concentrating.
Suicidal thoughts, or thoughts of hurting yourself.
Seeing or hearing things that are not real."
You can research even more. I know some have been helped by Accutane but I do not believe it is worth the risk.

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@mnitchke

Thanks for your reply. I am on Accutane 10 mg. which is a much lower dose than you were taking. I spoke with my Dermatologist yesterday and she doesn't want to increase the dosage yet pending lab tests in a few weeks(4) to see what effect it may have on my Liver. Meanwhile I am suffering from lack of sleep. irratability, poor personal thoughts, and more, not the least of which is constantly scratching some part of my body (Head, Neck, Chest,Arms, Legs, etc. etc.) I can't go more than 30 seconds without having to scratch.

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I haven’t been on this site for a week a so but this last post of yours got my heart. I’m so sorry you have been so itchy and having poor thoughts and your sleep routine is off. All not helping your situation. As you have figured out by now we have all been down this road, on this road or will be back on this road again depending on the triggers. Not fun. Thanks to this site my tool belt had gotten larger and when I’m having a bout of GD there’s a few things I try that I have learn from all these wonderful people. Being in California this heat and sunshine is not the blessing others thrive on. So glad of all this knowledge I have gained being on here. I wish I could think of some smart thing for you right now with the itchies from hell you are dealing with at this moment. I’m thinking positive thoughts for you. You are not alone in this.

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@mariannj

@mnitchke Because you mentioned "poor personal thoughts" I want to make you aware of the fact that Accutane can have the side effect of suicidal tendencies. I know this because of a personal experience with someone who took it for teen age acne and tried to overdose, unsuccessfully, thank goodness. A great deal of research was done and we found many teenagers were suicidal who were on Accutane and, when stopped, the tendencies disappeared. Everyone is wired differently so this is not true for all but if there is the slightest chance that you can react this way you should know it. We all care about you on this site and want to protect you and befriend you with our knowledge. You can try topical lidocaine, which is an anesthetic, slapping, which is better than scratching and of course the cilantro because you have nothing to lose and it will not harm you.
From the Internet: "While you (or your child) is taking Accutane, watch for any symptoms of depression, like:
Changes in mood and behavior.
Feeling unusually sad, angry, irritable, or aggressive.
Trouble concentrating.
Suicidal thoughts, or thoughts of hurting yourself.
Seeing or hearing things that are not real."
You can research even more. I know some have been helped by Accutane but I do not believe it is worth the risk.

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In order to be eligible to even get an Isotretinoin prescription, your Doctor has to sign you up for the "I Pledge" program. A strictly enforced program to refill the monthly prescription that must be updated by your Doctor every month that you are closely monitored with blood tests, no pregnancy as it causes severe birth defects, and changes in mood, behavior, etc. You will not even be able to fill or refill prescriptions without being enrolled this program.
https://www.ipledgeprogram.com/iPledgeUI/home.u

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Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

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@alyssar

Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

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Hi @alyssar and welcome to Mayo Clinic Connect. You'll notice that I moved your message to the main discussion about Grovers disease. I did this to introduce you to other members who actively participate in this support group, like @gardeningjunkie @jbd3 @nodgabnoj @mariannj @mnitchke and many more. You can click VIEW & REPLY to scroll through past posts.

I'm happy to hear the you seem to be at the end of a flare. Good for you for asking for tips on getting back to post-flare life and how you can avoid another outbreak.

Alyssa, was this your first experience with these symptoms? Did you doctor diagnose it as Grovers?

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@alyssar

Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

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You got my attention when you mentioned fiberglass-like pain. All your issues- burning, itching and fiberglass pain pretty much sums it up for me too. My first outbreak lasted a year, how long was yours? I too hope you are at the end of this breakout, sadly for most of us it comes and goes. For me steroids never helped with GD.
I have resumed my normal outdoor activities as I am in remission, but I have avoided taking hot baths in my bubble tub out of fear. Because I also have another form of eczema avoid all treated water like pools or hot tubs. Hot water when GD is active for me hurts along with heat, sweat and friction
Have you read this entire blog. Really crucial information was shared around Feb of 2019, read all our posts as finally I found something that has helped me.

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@gardeningjunkie

I wondered about why more women post here and decided women are more into blogging- sharing what we have learned and also needing to off load when miserable.

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I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil – Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

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@markopolo

I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil – Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

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Thank you, will do!

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@gardeningjunkie

You got my attention when you mentioned fiberglass-like pain. All your issues- burning, itching and fiberglass pain pretty much sums it up for me too. My first outbreak lasted a year, how long was yours? I too hope you are at the end of this breakout, sadly for most of us it comes and goes. For me steroids never helped with GD.
I have resumed my normal outdoor activities as I am in remission, but I have avoided taking hot baths in my bubble tub out of fear. Because I also have another form of eczema avoid all treated water like pools or hot tubs. Hot water when GD is active for me hurts along with heat, sweat and friction
Have you read this entire blog. Really crucial information was shared around Feb of 2019, read all our posts as finally I found something that has helped me.

Jump to this post

Thank you for your post. Its so good to know that It gets better! I had my first episode in the fall. That’s when I was diagnosed. It improved after 2 weeks of the triamcinolone. Then just about 2 weeks ago it started up again. I have been reading more about it and am avoiding triggers but just couldn’t take it anymore so I broke down and started the steroid again about 3 days ago. I have improved some so I would like to discontinue it. I’d prefer to avoid it as much as possible due to potential side effects. But I am afraid if I stop too soon symptoms will return. I understand the issue with heat, sweat, and the friction. I could hardly stand to have any clothing touch my back! I made a loose halter top out of a cut up and safety pinned beach towel to wear around the house! I have had to use cold packs to cool off just laying in bed! I am so grateful to have found this site! I will look up the posts you referred to. Thank you for the advice. In the meantime, if you are open to sharing what worked for you I would love to know. How long did it take for symptoms to resolve completely? When did you resume your outdoor activities? Thank you again for sharing.

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@gardeningjunkie

What most Grover's ladies do is remove the bra as soon as possible at home and some just go braless in public if they can get away with it. I have found 100% cotton without the wrinkle free chemical process or stainguard chemicals or 100% polyester camp style shirts which are safe for me, those with 2 pockets over the breast do a fine job of covering the bralessness, but I am small busted. Also with Grover's either find some soft cotton loose fitting Hawaiian style Mu Mu's, grandma style housedresses. They are simple to sew your own as I first tried to order online the fabric was too coarse for my sensitive skin. The gathering of this style house dress allows me to go bra free without anyone noticing. The looser your clothing is the better. My image will become secondary to desire to live pain free. . Grover's is triggered by heat, sweat and friction/pressure. For a light cotton which is safe for me I order from The White Cotton Gown my nighties. 100% cotton, well made and airy, but they hold up for years. I'd had mine for 3 years and still no sign of wear. At the end of the day I love to put this nighty on even the lace is 100% cotton. I also have Allergic Contact Dermatitis and am allergic to elastics, spandex and blended fibers. Even my bras are 100% cotton with drawstring closures. If you are large busted this would be a problem. There are also 100% cotton panties sold at Cottonique, on line, with the drawstring closure. The main thing is now no pressure, so no tight elastic around your waist, torso and definitely no underwires. Grover's normally is located in front and back torso and has gotten as low as my waist in the back. This may sound shocking, but my gynecologist told me years ago to give up all panties as they trap heat and will breed yeast, an ongoing issue I have for a decade. I often wear a 100% cotton long slip under the mu mu's at home without the panties and yes my yeast issues have been minimal if at all. Yet I have also eliminated my diet which was rich in the fruit that breed yeast, so sad, but now eat safe fruit only. Also you mentioned Victoria Secret. First none of their fibers are safe for me, let alone the chemicals they add to their clothing. Also the underwire pressure will trigger your Grover's. Hang loose sister! I know Facebook has a Grover's site, but I don't have time for Facebook, but you would learn more from others.

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Very helpful clothing advice! Thank you 🤗

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@alyssar

Thank you for your post. Its so good to know that It gets better! I had my first episode in the fall. That’s when I was diagnosed. It improved after 2 weeks of the triamcinolone. Then just about 2 weeks ago it started up again. I have been reading more about it and am avoiding triggers but just couldn’t take it anymore so I broke down and started the steroid again about 3 days ago. I have improved some so I would like to discontinue it. I’d prefer to avoid it as much as possible due to potential side effects. But I am afraid if I stop too soon symptoms will return. I understand the issue with heat, sweat, and the friction. I could hardly stand to have any clothing touch my back! I made a loose halter top out of a cut up and safety pinned beach towel to wear around the house! I have had to use cold packs to cool off just laying in bed! I am so grateful to have found this site! I will look up the posts you referred to. Thank you for the advice. In the meantime, if you are open to sharing what worked for you I would love to know. How long did it take for symptoms to resolve completely? When did you resume your outdoor activities? Thank you again for sharing.

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You are lucky the steroid is helping you as I found nothing really made any noticeable difference until I tried drinking a daily cilantro smoothie. That subject is covered in the posts I mentioned. From all I have read it helps about 50% of us. Cilantro is a heavy metal detox and heavy metals are tied to Grover's and Parkinson's (my brother has Parkinson's). They say GD is not heredity or contagious but one of my sisters also has GD.
I am obsessive about being outdoors and never totally gave going outside even in summer when my breakouts were bad. What I did was try to get outside by 6:00 am and in by 10:00 am. I did find I would need to give myself a day off and stay inside every few days. Heat, sweat and friction are triggers for most but I have also started a breakout in January so for me the rules often don't apply.
Once inside the bra comes off in fact all underwear does(can't stand anything around the waist) and I wear old lady 100% cotton house dresses inside. Never ever thought I would dress like this, yet when symptomatic like you mentioned our skin hurts all the time and tight clothing really hurts.
My symptoms never totally go away. Our skin is permanently changed, our collagen has separated and our cellular structure is not tight anymore. I always have a few scabs or small bumps especially along my lower spine. I got excited thinking they had all fallen off the other day but they had just sloughed off and are back in the same places. Maybe only 10. When broken out I can have hundreds and maybe a thousand. If I press my skin on my upper back I can feel little bumps under the skin. I know they are just waiting, even though they don't itch now. Although I have had this now for at least 5 years be hopeful in that the 1st breakout is usually the longest and more excruciating. My subsequent breakouts normally lasted about 5- 6 months until I started with the cilantro.
Because of cilantro I have broken my re-occurrence cycle and been clear for 1 year now, except for a rash mistakenly assumed to be GD as it was on my lower back torso and my derm said it was 100% related to the adult shingles vaccine I had gotten earlier in the week. The rash was more plaque like in appearance and not my usually hundreds of little bumps. It went away after 2 months. It felt very similar, yet not as bad as GD, but shingles is reported to feel much like GD.
I do wonder about those that have success with steroids. Often when they stop them the GD comes back with a vengeance. It seems it needs to run it's course and it can be delayed or stalled but then catches up when off steroids.
Keep searching the internet, have heard Facebook has a good site, but this site has been helpful for me. If it hadn't been this site I would have never learned about cilantro.

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@gardeningjunkie

You are lucky the steroid is helping you as I found nothing really made any noticeable difference until I tried drinking a daily cilantro smoothie. That subject is covered in the posts I mentioned. From all I have read it helps about 50% of us. Cilantro is a heavy metal detox and heavy metals are tied to Grover's and Parkinson's (my brother has Parkinson's). They say GD is not heredity or contagious but one of my sisters also has GD.
I am obsessive about being outdoors and never totally gave going outside even in summer when my breakouts were bad. What I did was try to get outside by 6:00 am and in by 10:00 am. I did find I would need to give myself a day off and stay inside every few days. Heat, sweat and friction are triggers for most but I have also started a breakout in January so for me the rules often don't apply.
Once inside the bra comes off in fact all underwear does(can't stand anything around the waist) and I wear old lady 100% cotton house dresses inside. Never ever thought I would dress like this, yet when symptomatic like you mentioned our skin hurts all the time and tight clothing really hurts.
My symptoms never totally go away. Our skin is permanently changed, our collagen has separated and our cellular structure is not tight anymore. I always have a few scabs or small bumps especially along my lower spine. I got excited thinking they had all fallen off the other day but they had just sloughed off and are back in the same places. Maybe only 10. When broken out I can have hundreds and maybe a thousand. If I press my skin on my upper back I can feel little bumps under the skin. I know they are just waiting, even though they don't itch now. Although I have had this now for at least 5 years be hopeful in that the 1st breakout is usually the longest and more excruciating. My subsequent breakouts normally lasted about 5- 6 months until I started with the cilantro.
Because of cilantro I have broken my re-occurrence cycle and been clear for 1 year now, except for a rash mistakenly assumed to be GD as it was on my lower back torso and my derm said it was 100% related to the adult shingles vaccine I had gotten earlier in the week. The rash was more plaque like in appearance and not my usually hundreds of little bumps. It went away after 2 months. It felt very similar, yet not as bad as GD, but shingles is reported to feel much like GD.
I do wonder about those that have success with steroids. Often when they stop them the GD comes back with a vengeance. It seems it needs to run it's course and it can be delayed or stalled but then catches up when off steroids.
Keep searching the internet, have heard Facebook has a good site, but this site has been helpful for me. If it hadn't been this site I would have never learned about cilantro.

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Thank you again for the great info. I have been reading posts since our last post. I started at the beginning and have a lot more to go. But its all good info. I especially liked your clothing suggestions you have made. Your symptoms really resonate with me. Also giving up sugar seems like something I may need to do as well. Cilantro sounds like a definite no brainer as well! Good stuff! Much appreciated! You are an inspiration! 🙏💪

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