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

I have not had a biopsy due to covid-19 and was diagnosed over a FaceTime appt. It does itch but nothing like hives do where I want to peel my skin off! The dermatologist said to use the cream for two weeks and then to call back if it doesn’t improve… I think I’m going to call tomorrow and demand a biopsy even though I’ve only been using the cream for about a week. Maybe they can just take it while I’m in my car-I don’t care! The worst part for me is aesthetics which I know is ridiculous but I already have very fair skin so it stands out like a sore thumb. It’s about to be summer time and I live at the beach. 🤦🏼‍♀️

Did you know one commonality of those of us with GD is having another auto-immune disease? I had leukemia. Like you before my first major GD breakout that lasted a year I was itchy at the neck and bra area I always had to remove tags from clothing. Yet that could have been my Allergic Contact Dermatitis, ACD, causing it because I am allergic to blended fibers, so even if wearing a cotton shirt if the tag is blended I itch. i can't wear any elastic as it has an element of rubber in it. So wearing bras, unless 100% cotton is out. I kept thinking my torso itching was an allergic reaction and I was missing what I was exposed to as I have changed my mattress, clothing, grooming products and much more. I know now I had a combination of issues the GD and ACD.

Have you ever had the 5 Day Extended Patch Test for ACD? Medicare pays for this expense test which gave me the names of my allergic tormentors. Google this exact test as it is not the 30 minute prick test for environmental allergies. I ask this because now I have 3 forms of eczema, not realizing I had additional form/forms for years before learning I had added news one that required different treatment. GD is the hardest to deal with as it has a mind of it's own.

This new outbreak is mild so far compared to previous ones and I only have a few spots on front torso, previously that area would break out but never as severely as the back torso,

Your Whole 30 diet is more restrictive than the anti-inflammation diet I am on, yet there are many similarities. I started my detox in October as an anti-inflammation diet plan. Major success with my chronic yeast issues and this is the first year in the last 4 that I have not required a super scary shot for long term use, its a cortico-steroid (Kenalog 40) which I would get each Dec. So far I have none of the internal stinging and burning that would radiate throughout my body inside my skin that would begin about 10 months after my shot. I would make myself wait the full year, yet I have been told by others they get this shot more frequently. My diet kills off internal yeast (fed by all sugar and carbs) as yeast raises our inflammation, ie histamines that make us itch. Your diet will kill yeast also.

Like you, even with my safe clothing, it must be very soft. Most of us with fiber allergies are safe wearing 100% cotton (free of wrinkle free additives, Scothguard, fire retardent), 100% polyester, 100% silk. Make sure you don't wear any poly-cotton or other blended fibers.

Keep trying the cilantro. My new break out seems stalled. It's still have it in the early stages beginning about 1 1/2 months ago. Now going on 3 weeks of fresh cilantro, however by week 2 on cilantro my breakout wasn't advancing and is still mild. Yet with GD we have permanent cellular changes to our torso skin. There is no cure and hopefully we can keep the inflammation down so our symptoms are less severe or go into remission.

The arginine / lysine connection was made by me because I started to explore the theory that GD, while not Herpes, is Herpes-like. It comes on from a variety of triggers, sometimes heat and sun. Sun can be a trigger for Herpes 1. It can come once, or it can recur, much like other forms of Herpes. The first attack is often the worst. In me, it travels up and down my trunk by levels, suggesting a spinal source, not a systemic or skin source. And the fact that quite a number of us found ourselves with GD after shingles shot (and in some cases, including mine, shingles.) The fact that it did not touch the area of skin where my shingles occurred reinforced that impression. So I looked for what could aggravate and what could alleviate Herpes, and that's where arginine/lysine appeared in my research. It was just a wild guess and for me, it yielded a great result. Your diet is already rich in lysine - but my diet is high in arginine and low in lysine. I adopted my diet (essentially the original Pritikin diet, not the watered down version they promote now,) because my brother had serious heart disease. He went on this diet and I did too. My diet was very close to it when I started, so it wasn't a big change for me.

The cilantro connection does suggest heavy metals in some cases. In my case, the cilantro, and taking zeolite, which should also remove heavy metals, including mercury from my system, did nothing. BTW, my research on cilantro as a detox for mercury mentioned that it can removed mercury from organs which puts it into your circulatory system but if you don't take extra measures to remove it, mercury can redeposit itself in even more harmful ways. I read that chlorella should be taken 45 minutes to an hour before cilantro to help with the removal of mercury from the bloodstream. Here's an NIH article about chelation/detox that reviews some of these issues: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/. Chlorella may be next on my list to use. What a journey!

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

Ok I have been reading every single post here. I'm now on page 11. I am male, 75 yo & was diagnosed approx 1 month ago with GD. Now here's the thing. I was told, read & believed that GD is an 'old man's disease' yet the majority of contributors here are female. So where are all these geezers? I will also post my story closer to the end of these posts.

I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.

I was scheduled for a TKR but insisted I have blood test for allergies. This blood test determined I was allergic to 5 or 6 metals and like you aluminum was high, nickle moderate and the others mild. My ortho was shocked, he said aluminum allergy was rare. Like you don't and never have cooked with aluminum. I don't drink sodas.
I sure hope you try the cilantro detox. I worked for me. It is a heavy metal detox and I also still take the chlorella tablets.
Frogger is another "old geezer", who doesn't blog so much anymore as he is still in remission I believe. He also had great success with cilantro. He is stopped using after he went into remission and although it put me in remission after a few months I was on it for about 10 months and went off in October because I started getting skin darkening on my cheeks. Over consumption of cilantro causes this. Still no new breakout. This is the longest I have ever been in remission.
Pressure caused severe pain for me, on top of the itching. I couldn't lay on my back or lean back in a chair or car seat. I know my skin is permanently changed as I always have a few bumps and scabs on lower spine area, but they are not itchy.
Stay hopeful, although my first outbreak lasted a full year, a year of misery, now 4 years later feel fantastic. One year is not unusual for a first outbreak. I am realistic and know it be back someday.

You are one tough cookie. Total admiration