I was about to update my findings -- I was annoyed with itching and rash for twenty years until ~4 mos. ago applied Witch Hazel ( 14% alcohol, full strength , liberally twice daily and took a week or two for relief. Thought it might be a cure, but recently began itching with gradual evidence of rash and am back to the WH. Looking back, wonder if my relief came at close to the cycle downturn? ( usually good for unknown number of months-- then symptoms return for unknown period and repeats.Ruled out seasonal or environmental influences. Perhaps I should have continued with the treatment after relief? Anyway, I am thankful for the help with the itching and will post as situation changes. Generous for Mayo to support such a convenient venue! Hope this may lend some help.
Like you, I have never had any dormant periods either, and I have had Grover's for probably 15-20 years. Of course, I have had it lower in intensity for awhile, but it has never, ever just gone away completely. I have tried witch hazel too, as well as what we used to call "rubbing alcohol" which is what is mixed in with your witch hazel. I have also tried just the alcohol itself, either in 70% or 90% strength. All of these things help a bit with the itching, at least temporarily. I speculate that it is mostly the cooling effect on your skin as these substances evaporate which is responsible for the temporary relief from itching. The cooling effect is probably also why some people get itching relief from using Sarna lotion since it has menthol in it. I like to use plastic spray bottles sometimes with witch hazel or alcohol in them which is helpful for those little devils that are in areas on your back that you can't reach. I have also put plain water in a spray bottle and then kept it refrigerated and used the cold water spray to temporarily stop the itching. It works, at least for awhile, so this is why I think evaporation and it's cooling effect on the skin is the mechanism behind all these things. If you can take it, using some kind of ice pack also helps. The pain relief roll-ons with 5% Lidocaine can help too because of the numbing effect of the Lidocaine, but I have no idea whether this idea is a good one or not. I just use it very occasionally. Good luck, @elderly1
I was recently diagnosed with Grover's Disease back in February of this year. The rash is on my trunk and my lower back. I have tried everything from corticosteroids to light therapy, and nothing seems to work. If anything the light therapy exacerbated GD. I don't have any itching, just was wondering if the rash itself goes away overtime? I have reached my wits end with this disease
I understand as I had a bad case for over a year and I was sure my apartment was infested until dr did biopsy and confirmed grovers disease. The only thing that helped is the betamethasone cream and using sensitive skin body washes and creams. Also take Benadryl every night to help with itching and allow me a few hrs of sleep. Time does seem to improve the condition but still get eruptions. Very distressing. Many in this group have had success with cilantro smoothies. Can’t hurt to try.
I was recently diagnosed with Grover's Disease back in February of this year. The rash is on my trunk and my lower back. I have tried everything from corticosteroids to light therapy, and nothing seems to work. If anything the light therapy exacerbated GD. I don't have any itching, just was wondering if the rash itself goes away overtime? I have reached my wits end with this disease
@chickensoup1, the rash acts differently in different people, going away permanently on it's own in some people, coming and going at intervals in others, and remaining a constant presence in others like myself. I realize you are very frustrated, but if your Grover's is producing no itching, consider that a perverse stroke of good luck because the Grover's itching can drive you absolutely CRAZY!
You will find great info on this forum if you follow this link and start reading the pages from this particular page in 2019 to the present day. It is very time-consuming, but worth the trouble. Best of luck! https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
@chickensoup1, the rash acts differently in different people, going away permanently on it's own in some people, coming and going at intervals in others, and remaining a constant presence in others like myself. I realize you are very frustrated, but if your Grover's is producing no itching, consider that a perverse stroke of good luck because the Grover's itching can drive you absolutely CRAZY!
You will find great info on this forum if you follow this link and start reading the pages from this particular page in 2019 to the present day. It is very time-consuming, but worth the trouble. Best of luck! https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
Thank you! It appears to be spreading to my lower back and sides of my body. Does the disease usually “run it’s course”? I’m an active
Male in my 30s. I don’t know how this could’ve happened to me. What therapies have people generally done to subside the rash? Like I’ve said, I’ve tried every cortisone cream and even light therapy
Thank you! It appears to be spreading to my lower back and sides of my body. Does the disease usually “run it’s course”? I’m an active
Male in my 30s. I don’t know how this could’ve happened to me. What therapies have people generally done to subside the rash? Like I’ve said, I’ve tried every cortisone cream and even light therapy
Research, my friend, you have to be willing to read and research for yourself. As I and others have mentioned before, go back to late Feb. of 2019 of the posts here on this forum and start going forward in time from there. I think this link will take you directly there. Good luck! https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
Hi @jbmakos, welcome to Connect.
Here is some information about Grover's disease http://rarediseases.org/rare-diseases/grovers-disease/ "Grover's disease is a rare, transient skin disorder that consists of small, firm, raised red lesions, most often on the skin of the chest and back."
I'm tagging @shirlwpb@cindylou on this message as they have asked questions about Grover's in the past too.
@jbmakos, have you been diagnosed with Grover's disease?
Yes, I was diagnosed with grover’s disease by my dermatologist (biopsy), I also have a history of various types of skin cancers. I treat the grover’s with anti fungal cream prescribed (you can buy it over- the-counter) and keeps the itching down.. I feel grover’s more in the summer from the heat than other times of the year.
October 2020 I bought 6 tee shirts. When the came, I put 5 in the washer and made the fatal mistake of wearing a dark green shirt to bed with electric blanket. Dark dyes are toxic. Clothes should come with a warning. I started itching the next day. Thought it was dry skin because of hot air heat. Within 2 weeks I was broke out front and back with painful blisters. My friend, a dermatologist of 30 years, saw it and showed me in his medical book exactly what I had.
17 days of Triamcinolone Acetonide cream 0.1% front and back twice a day, and all was right.
From December to Mid May It was ok. Occasionally if I felt a pain like a horse fly on my back, I would put a dab of the cream on me.
Don't have to tell you this. Spring came with a hot day off and on. I stayed inside. Asked my for a Non-Steriod treatrment because Steriods thin the skin. I am using Tacrolimus Ointment 0.1%, which was developed in Japan and approved in US 10 years ago.
My drill now (august) is 63 degrees in bedroom for sleep. Wake up with no symptoms. As the day progresses with exposure to heat I only go into places which are under 71 degrees. (have accurate laser thermometer. My house is at 70 degrees. My garage is at 65 degrees when working on cars. I just bought a cooling vest from Heatreliefdepot so I can ride my bike when its 70 outside. Touch up my back with some of Tacrolimus.
“https://pubmed.ncbi.nlm.nih.gov/11770393/“
Hope This Helps. Grover Cleveland
October 2020 I bought 6 tee shirts. When the came, I put 5 in the washer and made the fatal mistake of wearing a dark green shirt to bed with electric blanket. Dark dyes are toxic. Clothes should come with a warning. I started itching the next day. Thought it was dry skin because of hot air heat. Within 2 weeks I was broke out front and back with painful blisters. My friend, a dermatologist of 30 years, saw it and showed me in his medical book exactly what I had.
17 days of Triamcinolone Acetonide cream 0.1% front and back twice a day, and all was right.
From December to Mid May It was ok. Occasionally if I felt a pain like a horse fly on my back, I would put a dab of the cream on me.
Don't have to tell you this. Spring came with a hot day off and on. I stayed inside. Asked my for a Non-Steriod treatrment because Steriods thin the skin. I am using Tacrolimus Ointment 0.1%, which was developed in Japan and approved in US 10 years ago.
My drill now (august) is 63 degrees in bedroom for sleep. Wake up with no symptoms. As the day progresses with exposure to heat I only go into places which are under 71 degrees. (have accurate laser thermometer. My house is at 70 degrees. My garage is at 65 degrees when working on cars. I just bought a cooling vest from Heatreliefdepot so I can ride my bike when its 70 outside. Touch up my back with some of Tacrolimus.
“https://pubmed.ncbi.nlm.nih.gov/11770393/“
Hope This Helps. Grover Cleveland
Thanks for all the info on how you are combating this disease. I read the abstract at Pub Med and this sounds quite promising with no long-term-usage problems like the triamcinolone acetonide (steroid) cream. On the downside, this cream is quite expensive, so if one's insurance plan won't cover it's cost, that could be problematic for some people.
What is the condition of your sores after using the Tacrolimus on them ? Do they actually go away, or do they just stop itching? Thanks and best of luck!
Thanks for all the info on how you are combating this disease. I read the abstract at Pub Med and this sounds quite promising with no long-term-usage problems like the triamcinolone acetonide (steroid) cream. On the downside, this cream is quite expensive, so if one's insurance plan won't cover it's cost, that could be problematic for some people.
What is the condition of your sores after using the Tacrolimus on them ? Do they actually go away, or do they just stop itching? Thanks and best of luck!
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Like you, I have never had any dormant periods either, and I have had Grover's for probably 15-20 years. Of course, I have had it lower in intensity for awhile, but it has never, ever just gone away completely. I have tried witch hazel too, as well as what we used to call "rubbing alcohol" which is what is mixed in with your witch hazel. I have also tried just the alcohol itself, either in 70% or 90% strength. All of these things help a bit with the itching, at least temporarily. I speculate that it is mostly the cooling effect on your skin as these substances evaporate which is responsible for the temporary relief from itching. The cooling effect is probably also why some people get itching relief from using Sarna lotion since it has menthol in it. I like to use plastic spray bottles sometimes with witch hazel or alcohol in them which is helpful for those little devils that are in areas on your back that you can't reach. I have also put plain water in a spray bottle and then kept it refrigerated and used the cold water spray to temporarily stop the itching. It works, at least for awhile, so this is why I think evaporation and it's cooling effect on the skin is the mechanism behind all these things. If you can take it, using some kind of ice pack also helps. The pain relief roll-ons with 5% Lidocaine can help too because of the numbing effect of the Lidocaine, but I have no idea whether this idea is a good one or not. I just use it very occasionally. Good luck, @elderly1
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Helpful -
Hug
2 ReactionsHello,
I was recently diagnosed with Grover's Disease back in February of this year. The rash is on my trunk and my lower back. I have tried everything from corticosteroids to light therapy, and nothing seems to work. If anything the light therapy exacerbated GD. I don't have any itching, just was wondering if the rash itself goes away overtime? I have reached my wits end with this disease
I understand as I had a bad case for over a year and I was sure my apartment was infested until dr did biopsy and confirmed grovers disease. The only thing that helped is the betamethasone cream and using sensitive skin body washes and creams. Also take Benadryl every night to help with itching and allow me a few hrs of sleep. Time does seem to improve the condition but still get eruptions. Very distressing. Many in this group have had success with cilantro smoothies. Can’t hurt to try.
@chickensoup1, the rash acts differently in different people, going away permanently on it's own in some people, coming and going at intervals in others, and remaining a constant presence in others like myself. I realize you are very frustrated, but if your Grover's is producing no itching, consider that a perverse stroke of good luck because the Grover's itching can drive you absolutely CRAZY!
You will find great info on this forum if you follow this link and start reading the pages from this particular page in 2019 to the present day. It is very time-consuming, but worth the trouble. Best of luck!
https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
-
Like -
Helpful -
Hug
2 ReactionsThank you! It appears to be spreading to my lower back and sides of my body. Does the disease usually “run it’s course”? I’m an active
Male in my 30s. I don’t know how this could’ve happened to me. What therapies have people generally done to subside the rash? Like I’ve said, I’ve tried every cortisone cream and even light therapy
Research, my friend, you have to be willing to read and research for yourself. As I and others have mentioned before, go back to late Feb. of 2019 of the posts here on this forum and start going forward in time from there. I think this link will take you directly there. Good luck!
https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
-
Like -
Helpful -
Hug
1 ReactionYes, I was diagnosed with grover’s disease by my dermatologist (biopsy), I also have a history of various types of skin cancers. I treat the grover’s with anti fungal cream prescribed (you can buy it over- the-counter) and keeps the itching down.. I feel grover’s more in the summer from the heat than other times of the year.
October 2020 I bought 6 tee shirts. When the came, I put 5 in the washer and made the fatal mistake of wearing a dark green shirt to bed with electric blanket. Dark dyes are toxic. Clothes should come with a warning. I started itching the next day. Thought it was dry skin because of hot air heat. Within 2 weeks I was broke out front and back with painful blisters. My friend, a dermatologist of 30 years, saw it and showed me in his medical book exactly what I had.
17 days of Triamcinolone Acetonide cream 0.1% front and back twice a day, and all was right.
From December to Mid May It was ok. Occasionally if I felt a pain like a horse fly on my back, I would put a dab of the cream on me.
Don't have to tell you this. Spring came with a hot day off and on. I stayed inside. Asked my for a Non-Steriod treatrment because Steriods thin the skin. I am using Tacrolimus Ointment 0.1%, which was developed in Japan and approved in US 10 years ago.
My drill now (august) is 63 degrees in bedroom for sleep. Wake up with no symptoms. As the day progresses with exposure to heat I only go into places which are under 71 degrees. (have accurate laser thermometer. My house is at 70 degrees. My garage is at 65 degrees when working on cars. I just bought a cooling vest from Heatreliefdepot so I can ride my bike when its 70 outside. Touch up my back with some of Tacrolimus.
“https://pubmed.ncbi.nlm.nih.gov/11770393/“
Hope This Helps. Grover Cleveland
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Like -
Helpful -
Hug
2 ReactionsThanks for all the info on how you are combating this disease. I read the abstract at Pub Med and this sounds quite promising with no long-term-usage problems like the triamcinolone acetonide (steroid) cream. On the downside, this cream is quite expensive, so if one's insurance plan won't cover it's cost, that could be problematic for some people.
What is the condition of your sores after using the Tacrolimus on them ? Do they actually go away, or do they just stop itching? Thanks and best of luck!
What type of long term issues does the steroids have?