Grover’s Disease

Posted by sharfar @sharfar, Mar 13, 2022

Hello-I am a 54 year old, active female recently diagnosed with Grover’s Disease. It started shortly after having an MRI. And it started on my neck and went up behind my ear. It is now on my stomach and back and arms. Is there a correlation between the MRI and Grover’s? I’m also a runner but have been running in freezing temperatures, not heat as suggested in much of what I’m reading.
Thanks for any help you may offer including any suggestions on helping to get rid of it.

Interested in more discussions like this? Go to the Skin Health Support Group.

bjwilliams | @bjwilliams | Sep 28, 2025

In reply to @3dognite "Grovers is life altering. I've had it twice with 3 years between episodes. The first time..." + (show)

@3dognite

Grovers is life altering. I've had it twice with 3 years between episodes. The first time it lasted a year and went away on its own I guess. Meaning I was actively using multiple symptomatic treatments at the time. Supposedly there is no cure and no one seems to be looking for one. Therefore, I cannot say what I was doing cured or resolved anything. I produce and believe in Phyto pharmaceuticals. But it is my belief, that they did nothing for me. Not symptomatically and certainly not a cure.
That said, the Grovers came back and this time the struggle has been for more than 2 years in duration and is on going. I have done a great deal of study and research on the issue. I am a Nurse of 37 years and a large part of my job includes understanding research and studies. I will not bore you with the details, other than to say for 2 years I have ruined clothes and bed sheets with blood from scratching.
Through my own research, I have found that Dupixent works. I have had a 60 to 70% reduction in the itch. I can sweat and go to my grandkids baseball and flag football games without the need to return to the vehicle to cool off. My lesions have finally healed because I am not scratching to the point of bleeding and the open wounds have healed reducing the possibly of infection (Staph).
I don't know if Dupixent is a cure, again the treatment is ongoing. But I can tell you, this can help you get your life back, if you can use it. Coconut oil also helps a great deal.
They are wrong when they say it is caused by heat. Heat and sweat worsens the condition to be sure, but this is not the cause. I think it is the opposite. It is dry skin that brings it on and heat with sweating worsens it.
The Dermatologists in my area were and are "by the book." In short, they say say "sorry there is no cure."
I fired them all. They failed to engage, in fact barely showed up. I diagnosed myself and asked my GP for Dupixent. This drug has changed my life.
So, in closing Dupixent and coconut oil. The combination will change your life as well.
Be prepared, the injections are terribly expensive and will require a specialty pharmacy. Dupixent is not indicated as yet for Grovers Disease. I work full time and have full coverage insurance. I am an Honorably discharged U.S. Army Veteran and have Medicare. My primary insurer's (BCBS) pharmacy, CVS, denied the claim and the 2 subsequent appeals . My Dupixent injections have thus far have been via physician supplied free samples. It is my understanding each injection comes at a cost of approximately $20,000.00.
As for the dose of Dupixent: 1st round 600mg sub Q, then 300mg every 2 weeks there after.
My Best to You

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@3dognite I am a fellow GD sufferer who persevered and found a dermatologist who worked closely with me to find relief. After a year of trying various medications, he prescribed Dupixent. It has provided complete relief for me: no rash whatsoever, no itching whatsoever. Like you, I have survived on physician-supplied samples as I am on Medicare with supplemental insurance, which won't pay because Dupixent isn't approved by the FDA for the treatment of GD. I have two points to add to your most welcome post. The cost of Dupixent, though still prohibitively high, doesn't approach $20,000 a month. With GoodRx Gold, for example, it can be bought here in Richmond, VA for $3,223 a month (2 pens or syringes for bi-weekly injections). Secondly, I was on a bi-weekly schedule for a year, after which my dermatologist moved me to monthly shots. I still had no rash, no itching. I just began my third year and have moved to bi-monthly with an eye toward perhaps getting off it altogether in another year. My dermatologist reported at my three-year appointment last week that there are signs that Dupixent may be approved for all itching and that there are a number of new drugs recently released and approved by the FDA that show promise.

3dognite | @3dognite | Sep 28, 2025

I very much appreciate your words and experience shared regards GD. I like you look forward to the day I am far and away from the affliction. I will move forward based on the information you have provided.
I set out with my post in the hope of helping others. Perhaps I did, but I feel instead that I was the one who received help.

bjwilliams | @bjwilliams | Sep 29, 2025

In reply to @3dognite "I very much appreciate your words and experience shared regards GD. I like you look forward..." + (show)

@3dognite There's a write-up on Grover's by the administrator of the Facebook Grover's Disease Group which may interest you. It's at https://www.facebook.com/groups/2434702380189797/posts/3546450875681603/

lucyjo | @lucyjo | Oct 19, 2025

I have had Grover’s and was diagnosed with Lichen Planus. I have had both for 9 months. I have been on Prednisone and have developed an allergy to medications that I was on. I have tried many treatments. For me Sarna lotion helped, the menthol cooled and helped relieve itching for a bit. I use Vanicream soap and lotion as well. I have had so many issues at one time all caused itching. For me cool shower keep skin moisturizer on. It truly does affect your life as you all know.

elderly1 | @elderly1 | Oct 24, 2025

In reply to @hawkssr "Like most GD sufferers I’ve tried just about everything that I could afford. Been to two..." + (show)

@hawkssr
Mine also is most active during cooler weather~ six month cycles. Itching has reduced with witch hazel, But have read a review under 'skin care' re. using kelp for disorders (well documented) and he gives details of dosage, etc.

Have been using for a year w/o GD ?

hawkssr | @hawkssr | Oct 24, 2025

In reply to @elderly1 "@hawkssr Mine also is most active during cooler weather~ six month cycles. Itching has reduced with..." + (show)

@elderly1 interesting. I finally had a dermatologist suggest Dupixent and I’ve been on it for two years. It’s been a life saver, no more intense itching. Praying it continues as was at the end of my rope trying to cope with the awful itch.

alju | @alju | Nov 24, 2025

In reply to @monalisa809 "Thank you for having me in your group. I've just been diagnosed by biopsy with Grover's..." + (show)

Hello
Do you know what became of this site? What happened to the posts? I really miss this group and haven't seen any thing current for months.

bjwilliams | @bjwilliams | Nov 30, 2025

In reply to @alju "Hello Do you know what became of this site? What happened to the posts? I really..." + (show)

@alju I'm just guessing, but I suspect many participants have moved to the Facebook group Grover's Disease Support Group which enjoys robust participation and an administrator who has conducted in-depth medical research and shares his findings via a regularly updated essay on the disease.

Colleen Young, Connect Director | @colleenyoung | Nov 30, 2025

In reply to @alju "Hello Do you know what became of this site? What happened to the posts? I really..." + (show)

@alju and @bjwilliams, the Grover's Disease forum is still active with members like @gardeningjunkie @sharfar @patricia0456 @patricia0456 @pcon @3dognite and many others.

Use the group search to find all Grover's related discussions here: https://connect.mayoclinic.org/group/skin-conditions/

@alju, how are you doing?

alju | @alju | Nov 30, 2025

In reply to @colleenyoung "@alju and @bjwilliams, the Grover's Disease forum is still active with members like @gardeningjunkie @sharfar @patricia0456..." + (show)

@colleenyoung

Thank you.

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