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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@rickbru

I have had many MRIs without triggering a recurrence of my Grover’s. I believe what triggers the outbreak is the contrast agent used in connection with most MRI exams (Gaddolineum).

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rickbru- Very interesting. Gaddolineum- this is a silvery METAL. Fresh or fresh frozen cilantro put my severe GD which was charactorized by one full year, then 6 months on and 6 months off for about 4 years into remission because it is a heavy metal detox. I have been clear for about 5 years now and blend up a 1/2 bunch of cilantro for about 2 days once a month or so. Heavy metals are tied to Parkinson's, Alzheimer's and GD. I tried the oil's or capsules and noticed no improvement, but blending up fresh or fresh frozen was a miracle for me. I'll never take for granted being able to lean back in my seat while driving or laying on my back. I could only lay on my sides, it still took a year of being clear to have the nerves feel normal again.
I have a very good blender, Ninja, Professional 1,000 watt, well under $100.00 on Amazon. My old oster basic blender still left pieces of the cilantro, this blender will still take a few minutes to blend, but it will do a good job of blending this yucky tasting tonic. I chug it down holding my breath. Avoiding pain seriously motivating for me.

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@rfsimpson2

I am takin daily cilantro smoothies. Not on an empty stomach. Has anyone experienced loose stools while on this regiment? I am.
Going for dermatologist appointment tomorrow to assess red light treatment options.

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I’ve been drinking cilantro smoothies for 15 days straight now, w no stomach or bowel problems. Quite honestly, no improvement on my ugly itchy rash but I’m afraid to stop drinking them, as so many sufferers have sworn by drinking them. I’m in an 11week stretch of agony but I keep trying. I’m now back on steroid cream. Keep the faith. I’m trying to.

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Unfortunately, the cilantro/chlorella protocol doesn't work for everyone. I stuck with it for six months without any relief. The trial-and-error method of finding relief is very frustrating. It took me almost exactly a year, working closely with my dermatologist, to finally try Dupixent. That worked. But it produced another set of headaches: cost. I am on Medicare, which will not approve Dupixent for Grover's because the FDA has not approved it for Grover's. So, despite the fact that I pay almost $800 a month for Medicare and Medicare Supplemental Insurance, neither will pay for the extraordinarily expensive Dupixent. And I don't qualify for any of the drug-sponsored financial aid.

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@siesta1715

I’ve been drinking cilantro smoothies for 15 days straight now, w no stomach or bowel problems. Quite honestly, no improvement on my ugly itchy rash but I’m afraid to stop drinking them, as so many sufferers have sworn by drinking them. I’m in an 11week stretch of agony but I keep trying. I’m now back on steroid cream. Keep the faith. I’m trying to.

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For me it took about 3 weeks of drinking cilantro in Feb 2019 to notice mild relief, yet I was only about a month into a new break out and the rash was far from being full blown. After 3 months I knew it helped as no new papules had developed for weeks and the pain and itching was minimized and I haven't had another break out since. I was too afraid to stop the blended cilantro so I drank one daily 9 months even without activity.
For most, including myself, the initial breakout is the most severe and longest lasting, mine lasted one full year. Subsequently my pattern was 6 months of an active painful rash and 6 month dormancy in which it took about 6 months for all the rash papuale scabs to fall off.
Don't give up yet, perhaps it takes longer to notice improvement if this is your initial break out.
From my reading cilantro helps about 40% of us. I understand your misery and hope you get relief. Please keep us posted.?
I have a question about your topical steroid. I had both topical steroids and an injected corticosteroid and got zero relief. Personally I had about 1/2 dozen prescriptions of other topicals and not one ever gave me any relief. Keep in mind a steroid is only a treatment which comes with side effects from long term usage. They do nothing to stop the cause of the condition.

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@gardeningjunkie

For me it took about 3 weeks of drinking cilantro in Feb 2019 to notice mild relief, yet I was only about a month into a new break out and the rash was far from being full blown. After 3 months I knew it helped as no new papules had developed for weeks and the pain and itching was minimized and I haven't had another break out since. I was too afraid to stop the blended cilantro so I drank one daily 9 months even without activity.
For most, including myself, the initial breakout is the most severe and longest lasting, mine lasted one full year. Subsequently my pattern was 6 months of an active painful rash and 6 month dormancy in which it took about 6 months for all the rash papuale scabs to fall off.
Don't give up yet, perhaps it takes longer to notice improvement if this is your initial break out.
From my reading cilantro helps about 40% of us. I understand your misery and hope you get relief. Please keep us posted.?
I have a question about your topical steroid. I had both topical steroids and an injected corticosteroid and got zero relief. Personally I had about 1/2 dozen prescriptions of other topicals and not one ever gave me any relief. Keep in mind a steroid is only a treatment which comes with side effects from long term usage. They do nothing to stop the cause of the condition.

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Thank you for your comments. Yes, this has been my first outbreak w Grover’s and I’m now in my 13th week. I had a steroid shot in the beginning that didn’t help. And that’s when the Grover’s really raged. Now between topical steroids, using Sarna itch cream, taking Benadryl (occasionally), cilantro smoothies, caladryl and upping my intake of vitamins B12, C and Biotin, I do feel it’s trying to slow down. The rash isn’t as angry looking, and some areas have cleared up but I’m still getting new postules here and there. I’m so thankful to have this blog available to me. It’s a Godsend to know I’m not alone in fighting this crazy itchiness. Seeing your progress gives me hope. 🙏🏻

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@gardeningjunkie

rickbru- Very interesting. Gaddolineum- this is a silvery METAL. Fresh or fresh frozen cilantro put my severe GD which was charactorized by one full year, then 6 months on and 6 months off for about 4 years into remission because it is a heavy metal detox. I have been clear for about 5 years now and blend up a 1/2 bunch of cilantro for about 2 days once a month or so. Heavy metals are tied to Parkinson's, Alzheimer's and GD. I tried the oil's or capsules and noticed no improvement, but blending up fresh or fresh frozen was a miracle for me. I'll never take for granted being able to lean back in my seat while driving or laying on my back. I could only lay on my sides, it still took a year of being clear to have the nerves feel normal again.
I have a very good blender, Ninja, Professional 1,000 watt, well under $100.00 on Amazon. My old oster basic blender still left pieces of the cilantro, this blender will still take a few minutes to blend, but it will do a good job of blending this yucky tasting tonic. I chug it down holding my breath. Avoiding pain seriously motivating for me.

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Hi there! I am hoping you are feeling better! My elderly father has been suffering from GD for one year now. Nothing seems to help so he would like to try cilantro smoothies. What kind of cilantro have you been using? I know there is Italian cilantro, regular cilantro and also parsley. Thank you so much!

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To all those sufferers out there, I have posted this several times; the value of ice packs on the areas that itch really cannot be understated. A very effective, temporary fix. Also, Zostrix, available on Amazon, has been a great help to me. Cilantro smoothies, whatever the origin, are probably the best long-term fix. It takes a while for most people to work. I have also read here that Head and Shoulders Shampoo helps to eliminate the itch. Just read the blogs on this site. Beast information anywhere.

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@yuliya91

Hi there! I am hoping you are feeling better! My elderly father has been suffering from GD for one year now. Nothing seems to help so he would like to try cilantro smoothies. What kind of cilantro have you been using? I know there is Italian cilantro, regular cilantro and also parsley. Thank you so much!

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Ive been drinking cilantro smoothies for one month. One each day. I have no idea if they’re helping me as I’m now 13weeks since my Grover’s started and I’m still suffering. That said, I’m afraid to stop the smoothies just in case they really are helping! I use fresh cilantro that I chop up before putting it in my Bullett. A lg bunch of cilantro lasts me for three smoothies. I fill the Bullett w strawberries, blueberries, 1/2 banana and some oat milk (oats are good for inflammation). All this fruit makes the taste so much better and they all have antioxidant benefits, plus they mask tge cilantro taste. It helps to freeze the fruits for taste. I use either regular cilantro or organic. Whichever looks the freshest.

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@siesta1715

Ive been drinking cilantro smoothies for one month. One each day. I have no idea if they’re helping me as I’m now 13weeks since my Grover’s started and I’m still suffering. That said, I’m afraid to stop the smoothies just in case they really are helping! I use fresh cilantro that I chop up before putting it in my Bullett. A lg bunch of cilantro lasts me for three smoothies. I fill the Bullett w strawberries, blueberries, 1/2 banana and some oat milk (oats are good for inflammation). All this fruit makes the taste so much better and they all have antioxidant benefits, plus they mask tge cilantro taste. It helps to freeze the fruits for taste. I use either regular cilantro or organic. Whichever looks the freshest.

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Thank you so much. The cilantro is regular, not Italian, right?

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@yuliya91

Thank you so much. The cilantro is regular, not Italian, right?

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Yes, regular cilantro. If the organic cilantro looks fresher I buy that.

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