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.

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@jameswood40

I have had Grover's disease for over 3 years.Have been on Dupixent for 1 month and I am so much better,James Wood

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Do you have any idea how your doctor got you approved for Dupixent to treat Grover's disease? I've talked to my dermatologist several times about trying it, but since it isn't approved for Dupixent and a pathology report must be sent I wouldn't be approved. If you can find out and let me know I'll forever be in your debt. After a year of scratching head to toe only Prednisone has given any relief, but is short term and thining my skin that everything results in a bruise or a break in my skin....have to walk around with bandaids in my pocket!

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It is a subcutaneous injection. It is taken every two 2 weeks

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I got samples from my doctor

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@sophiep

Do you have any idea how your doctor got you approved for Dupixent to treat Grover's disease? I've talked to my dermatologist several times about trying it, but since it isn't approved for Dupixent and a pathology report must be sent I wouldn't be approved. If you can find out and let me know I'll forever be in your debt. After a year of scratching head to toe only Prednisone has given any relief, but is short term and thining my skin that everything results in a bruise or a break in my skin....have to walk around with bandaids in my pocket!

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Good evening @sophiep and @jameswood40. When I was finally approved for Dupixent a few months ago and I realized how amazingly it tackled my severe AD, I was wondering whether folks with Grover's disease might benefit from these tremendously helpful bi-monthly injections. At that time I don't think there was a response. Now we know.

Just so you know I have not had one neuropathic flare since the first Dupixent injection. If I can help, I will. The first question......have you read the Prescribing Information for Dupixent? That might be helpful and maybe give you a hint as to how to proceed. I did notice that another skin health issue is listed..Prurigo Nodularis. Secondly, have you tried calling Dupixent? 844 387-4936. Press #1 between 8 a.m. and 9 p.m. The medical professionals answering your calls have a lot of knowledge. They also have access to the labs where experts work on the research and may have answers to more difficult questions.

I hope your outreach will return positive responses. I, too, had to have approval and supportive documentation from my dermatologist. I also have noted that some dermatologists have more accessibility to certain procedures and treatments than others. Perhaps this is a prescriptive hierarchy of some kind.

Do you have additional questions or requests?

May you be healthy and whole.
Chris

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This is a very good forum for this disease, super knowledgeable and lots of tips, if nothing else helps to know we are not alone in this battle. https://www.facebook.com/groups/2434702380189797/?ref=share

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@hawkssr

This is a very good forum for this disease, super knowledgeable and lots of tips, if nothing else helps to know we are not alone in this battle. https://www.facebook.com/groups/2434702380189797/?ref=share

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I feel sorry for anyone has this disease I have had it for 6yrs it,s been a constant fight everyday, I know that everyone wornders how the hell did I get this s#&t, but I check this site about every two weeks or so to see if anything new has come along to help us. God bless all of you that are in this fight. Don,t give up, GDgd.

i really feel sorry for anyone

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Did the MRI involve injection of a contrast agent?

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Had GD for about 6 weeks now. OTC cremes do nothing as Stan 1943 says. Anti-biotics don't seem to help either. Started Cilantro smoothies 2x/day recently. Looking for something, anything to help. Doc's sure don't. Maybe CBD oil? Good luck people of Gosh Darn kingdom!

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@woody92354

Had GD for about 6 weeks now. OTC cremes do nothing as Stan 1943 says. Anti-biotics don't seem to help either. Started Cilantro smoothies 2x/day recently. Looking for something, anything to help. Doc's sure don't. Maybe CBD oil? Good luck people of Gosh Darn kingdom!

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Join this forum, you’ll get all the info and help for this ridiculous disease. This has given more info than my dermatologist ever did!
https://www.facebook.com/groups/2434702380189797/?ref=share

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@hawkssr

Join this forum, you’ll get all the info and help for this ridiculous disease. This has given more info than my dermatologist ever did!
https://www.facebook.com/groups/2434702380189797/?ref=share

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Hey Hawk. That's because derms don't actually have to live with this. I have an appt. w/mine next week, and he's going to hear all about cilantro smoothies (I'm actually having one as I type this) & how all his pills & OTC lotions did nada....Good luck to you, my friend!

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