Grover's Disease: What works to help find relief?

I don't have the time to research when I last wrote but, short story, had Grover's in early 2019 and after almost going insane I began the cilantro smoothies and got relief within a few months and it was totally gone within 8 months but continued smoothies intermittently. Then in 2020 I developed GCA, went on heavy duty high doses of prednisone, suffered every possible side effect (also lost my husband that year) and developed Grover's again this past September 2021. This time it came back as never before. Entire torso, all sides and I learned pressure and heat aggravate it. Because I was immobile due to muscle myopathy I was often in a leather recliner and my back became intensely involved. (I have since put a cotton sheet over it.) Alone in house, I had no way of applying anything. I I tried long handled things.) I went through every cream you have all mentioned, and my MD daughter finally said to take a valium at night to help sleep. That only worked a few times. Then she said to try a Benedryl with it. Worked a little better. The cilantro is doing nothing for me this time. Of course the triamcinolone never worked either. The prednisone caused me to develop avascular necrosis in both hips (bone death) so first hip replacement is February 28, less than a week away. I believe stress from my husband's death brought on the GCA and then the prednisone reduced my immunity to zero, which, coupled with the stress, triggered the Grover's. The only thing I have not done is the UVA treatment and don't intend to. My diet and supplements are extremely healthy. The prednisone gave me a severe case of Cushing Syndrome so the Grovers is even in my groin, where I have folds that never existed before after beginning to finally reduce weight. The hip pain is nothing compared to the itch/burning/pain of Grovers. I continue to get new ones and feel I am destined to continue until all health issues are resolved and I am off prednisone (another 7 months if lucky). I wear nothing but cotton and rarely anything with a waist because of the pressure. Same for undergarments. I only dress to see a doctor. I haven't given up on the cilantro. This time I truly believe it will not go away and I will go insane (just kidding) but I am seriously close to it. How can one little tiny pimply type thing cause so much pain and itch? Some of them are not even red. In additions, I have leiomyomas which also itch. I have a genetic mutation for HLRCC but so far have not had the cancer. And that is me now. I often think of my old friends on here and wonder how they are doing. Unable to sit for long periods of time I have not been on my computer. I send my well wishes to all of you and ask for your good thoughts next Monday when I have my hip replacement. I am hoping the pain meds the following week will numb the itching.

Jump to this post

I had been back on fresh and frozen cilantro for about 3 months after realizing it was starting up again. It stalled the severity I believe.
The outbreak stayed very mild. This week only injesting cilantro every other day, using up the fresh and frozen supplies and plan to knock it off altogether next week. Still a sprinkling of papuales under the breast area and on lower front and back torso, yet the itching and pain sensations are neglible, only a few papuales have any sensation.
We never really know, is this outbreak mild because of the cilantro? Or is it mild because after years of dealing with GD and each outbreak getting milder, going from a pain and misery index of extreme to subsequent outbreaks less miserable is this common with others too.
Yet I will point out, until I did the first cilantro cleanses I had little relief and the cilantro gave me 2 1/2 years of inactivity.

It's unfortunate some can't locate cilantro regularly. Be sure to ask your grocery manager to order fresh cilantro on a regular basis. Smaller grocery chains have more flexiblity. Also a reminder the frozen worked just as well for me and others, so when you see it buy extra to freeze.

Jump to this post

@gardeningjunkie When you start consuming cilantro smoothies, how many days does it take until you start seeing results?

Thanks in advance for your response. 🙂

Jump to this post

In my case with my first round of cilantro smoothies it took about 3 weeks to have hope that my outbreak was stalling. My cycle pattern after my first full one year of severe front and back torso papuales, was 6 months of dormancy and 6 months of activity. I was in my 3rd year of dealing with this when another outbreak started. Cilantro stalled the outbreak and dimminished the itching and pain, yet it took over 6 months for the crusted papuales to fall off , they just hung there and if scratched they would be replaced, just mildly itchy. I was confident it was working after 3 months, yet out of fear I continued the blended cilantro 6 months, probably longer than anyone else on this site. Then I had 2 years of dormancy, doing anything I wanted- sweating in the hot summer garden, other activities like rough off roading that create intense friction on the back and no issues and then in Nov of 21 noticed it was beginning again. It wasn't as severe as I was used to but finally decided to back on the smoothies in January. My recurrance just stayed mild, yet I kept up the smoothies until a few weeks ago as I now think this outbreak is over, yet I still a few inactive papulaes hanging on, but no itching. The tingling and pain are gone. I've even resumed some activites that in the past have aggrevated it.
I no longer put the cilantro in my delicious morning smoothie. I simply put half a bunch, fresh or frozen, stems and pieces into a blender with about 1/2 cup water, blend and then hold my breath and drink it down, considering it my morning tonic. I hold my breathe and the taste is not noticeable and it doesn't contaminate the taste of my regular health smoothie.
Best of luck, it's a treament that has helped many, but not all. Not one other treatment prescribed by doctors ever gave me relief or shortened my outbreaks. I read every eczema site I could find on the internet, including the Mayo skin site and learned nothing of any personal benefit about GD. I have a medicine cabinet full of expense useless prescriptions. This site and sweet Kimass1 who recommended cilantro gave me my life back.

Jump to this post

@gardeningjunkie When you start consuming cilantro smoothies, how many days does it take until you start seeing results?

Thanks in advance for your response. 🙂

Jump to this post

@gardeningjunkie Thank you for your wonderful, detailed response. I've tried the Cilantro smoothies in the past without much success but I plan to try it again.

Jump to this post

In my case with my first round of cilantro smoothies it took about 3 weeks to have hope that my outbreak was stalling. My cycle pattern after my first full one year of severe front and back torso papuales, was 6 months of dormancy and 6 months of activity. I was in my 3rd year of dealing with this when another outbreak started. Cilantro stalled the outbreak and dimminished the itching and pain, yet it took over 6 months for the crusted papuales to fall off , they just hung there and if scratched they would be replaced, just mildly itchy. I was confident it was working after 3 months, yet out of fear I continued the blended cilantro 6 months, probably longer than anyone else on this site. Then I had 2 years of dormancy, doing anything I wanted- sweating in the hot summer garden, other activities like rough off roading that create intense friction on the back and no issues and then in Nov of 21 noticed it was beginning again. It wasn't as severe as I was used to but finally decided to back on the smoothies in January. My recurrance just stayed mild, yet I kept up the smoothies until a few weeks ago as I now think this outbreak is over, yet I still a few inactive papulaes hanging on, but no itching. The tingling and pain are gone. I've even resumed some activites that in the past have aggrevated it.
I no longer put the cilantro in my delicious morning smoothie. I simply put half a bunch, fresh or frozen, stems and pieces into a blender with about 1/2 cup water, blend and then hold my breath and drink it down, considering it my morning tonic. I hold my breathe and the taste is not noticeable and it doesn't contaminate the taste of my regular health smoothie.
Best of luck, it's a treament that has helped many, but not all. Not one other treatment prescribed by doctors ever gave me relief or shortened my outbreaks. I read every eczema site I could find on the internet, including the Mayo skin site and learned nothing of any personal benefit about GD. I have a medicine cabinet full of expense useless prescriptions. This site and sweet Kimass1 who recommended cilantro gave me my life back.

Jump to this post

I don't have the time to research when I last wrote but, short story, had Grover's in early 2019 and after almost going insane I began the cilantro smoothies and got relief within a few months and it was totally gone within 8 months but continued smoothies intermittently. Then in 2020 I developed GCA, went on heavy duty high doses of prednisone, suffered every possible side effect (also lost my husband that year) and developed Grover's again this past September 2021. This time it came back as never before. Entire torso, all sides and I learned pressure and heat aggravate it. Because I was immobile due to muscle myopathy I was often in a leather recliner and my back became intensely involved. (I have since put a cotton sheet over it.) Alone in house, I had no way of applying anything. I I tried long handled things.) I went through every cream you have all mentioned, and my MD daughter finally said to take a valium at night to help sleep. That only worked a few times. Then she said to try a Benedryl with it. Worked a little better. The cilantro is doing nothing for me this time. Of course the triamcinolone never worked either. The prednisone caused me to develop avascular necrosis in both hips (bone death) so first hip replacement is February 28, less than a week away. I believe stress from my husband's death brought on the GCA and then the prednisone reduced my immunity to zero, which, coupled with the stress, triggered the Grover's. The only thing I have not done is the UVA treatment and don't intend to. My diet and supplements are extremely healthy. The prednisone gave me a severe case of Cushing Syndrome so the Grovers is even in my groin, where I have folds that never existed before after beginning to finally reduce weight. The hip pain is nothing compared to the itch/burning/pain of Grovers. I continue to get new ones and feel I am destined to continue until all health issues are resolved and I am off prednisone (another 7 months if lucky). I wear nothing but cotton and rarely anything with a waist because of the pressure. Same for undergarments. I only dress to see a doctor. I haven't given up on the cilantro. This time I truly believe it will not go away and I will go insane (just kidding) but I am seriously close to it. How can one little tiny pimply type thing cause so much pain and itch? Some of them are not even red. In additions, I have leiomyomas which also itch. I have a genetic mutation for HLRCC but so far have not had the cancer. And that is me now. I often think of my old friends on here and wonder how they are doing. Unable to sit for long periods of time I have not been on my computer. I send my well wishes to all of you and ask for your good thoughts next Monday when I have my hip replacement. I am hoping the pain meds the following week will numb the itching.

Jump to this post

That's just terrible to hear and I wish you a speedy recovery from all your suffering. I wish there were more I could say or do. Also, thanks for your comments on prednisone. I went to a dermatologist recently and saw a Physician's Assistant for another minor skin problem and told him I also had Grover's. He asked me if I wanted to try prednisone for it and claimed it was the "go-to" treatment for Grover's. From all my reading here on this forum, I was highly skeptical of that claim, but I took the scrip and got it filled, but decided not to take any of it for awhile since I had read that it can possibly suppress your immune system which is something none of us needs with COVID still hanging around. After reading your experience after taking it, I will definitely NOT be taking that stuff!

Jump to this post