Grover’s Disease

@bjwilliams

I wondered about that; I'll have to revisit that group. I did so for a short while only.
I do remember that administrator who is excellent.
Thanks.

@bjwilliams

Thanks .

@nodgabnoj
I was just diagnosed with Grover's. My rash was severe on my legs after my first Shingrix/shingles vaccine. Have you heard of this happening to a lot of people?

I developed GD after my shingles shot, as did a number of people who monitor this site. You are not alone in this. Please continue to read this as well as the F book group. They both have a lot of good information. Unfortunately they are groups you don’t want to belong to.

@nodgabnoj

Have you had a lot of sun shine exposure in your life? The sun damage from UV is what is supposed to cause this matter and damages skin cells. I took sunbaths for years, actually over decades and unfortunately, and the problem is permanent. I've read that its the preservative in that shingles shot that is the villian. That's why I am afraid to get one.

I have spent a fair amount of time in the sun when I was younger. I have experienced skin cancer over the years but never connected exposure to the sun and GD. I can’t recommend either getting or not getting the Shingles vaccine. I know many people who have had the shots with no problems. It was a different story for me.

@nodgabnoj

I have had GD for over 20 years and the shingles shot did not affect me. I have had major breakouts after most surgeries as I have been told that the stress on your body can cause a flareup. I am currently taking a very light dose of Acitretin and seems to be helping. Keep your skin hydrated in the winter time as that seems to help me.

@woody92354 What do you put in the smoothie and how much cilantro please?

Many posting on this discussion have had success with blending cilantro and drinking it daily for months. I learned this after reading on the Mayo a discussion from Kismass1. There was a group of us experimenting and blogging with each other and about 40% had success with cilantro. Most noticed improvement after daily use for a month and then kept it up for another month. My misery had been so great I drank this tonic daily for 6 months even though after 1 month I was certain no new papuales were developing, the old ones were becoming less itchy and painful going dormant but it took over a year for the dormant scabs to fall off and not return. I could scratch them off, but the unhealthy skin would simply scab over again. Today, now years later my skin healed.
The first and most severe break out lasted 1 full year and my entire upper and lower front and back torso was covered in thousands of papuales. Only my sides and breast area was clear. The pain was severe and I couldn't ever lean back in a chair or car or lay on my back in bed. At least my sides were pain free. After that first year I got a 6 month reprieve then GD became active again and this 6 month on and off cycle went on for several more years until I learned about cilantro as a heavy metal detox. Like most I tried to make the cilantro palatable adding fruit and so on. It simply ruined the good tasting additives. Today as preventative maintenance if notice a few papuales at my lower back waistline I blend up about half a bunch, stems and leaves, add about 1/2 cup water and chug it down like a tonic. I do this about 4 days a months to keep up with the heavy metal detoxing ability's of cilantro.
I so hope this will heal you. I have excellent medical and had a medicine cabinet full of every single prescriptive treatment available from steroids and so on. Not one helped and believe me I obsessively researched on line and went to many allergists and dermatologists. Reading the Mayo blog suggesting cilantro as a treatment was a blessing I am so very grateful for.