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

Thanks for your, always informative, response. I am going on to my 8th month with this situation. I do believe that the shingles I was doing smoothies for about two months, but gave them up because they didn't seem to have an effect. I'm back doing them again. I did two rounds of oral steroids over a period of two months, 7 days each. The relief was blessed, but the itching has returned. I knew it would, but it is possibly more aggressive than before. I have tried just about everything that has been mentioned on this site, but changing my diet. I eat quite thoughtfully, minimal meat, lots of fruit and vegetables. I think I am going to try eliminating the small amounts of sugar that I consume and will start looking at the diet that you, and others on this site, recommend. I find that the itching is worse mostly in the morning. Having seen one of your previous posts, I now know why. My symptoms seem to be a little "untraditional", in that I get a
lot of annoyance on my neck and scalp. Sometimes it also irritates the lower part of my legs. The last time I saw my derm, he said that, despite a biopsy, I may not have GD because my skin was so clear. I saw the picture of the woman's abdomen on this site, a couple of days ago. My outbreaks are not nearly that severe. I can't imagine her agony. What shocks me is that the medical field knows so little about this disease, and seems to take very little notice. I am constantly amazed at the amount of information that you, and others on this site, have discovered. I am going to have to make some more changes to my diet in hopes that I can at least mitigate the misery that my GD(?) has caused me. Thanks again for all your insights.

Could you remind me what testing you have had. As mentioned I have 2 chronic forms, ACD and GD and my 3rd form of eczema should not return because now I know what triggers it. GD did bother the back of my neck and just into the back hairline and I have read that others have it in this location. Typically GD is a torso rash, but have read others have it spread to thighs and arms.
The photo you mentioned looked like some photos I have seen of GD, but didn't look like mine either. My papuales were tiny, almost goose-bump size and I had hundreds much closer together. Most severe on lower back torso, but it spread to upper back torso and then abdomen and a few on my chest. Mine were never as raised as those in the photo. My recurrences have been more limited to my back, especially along the lower back and then up my spine. If you got to dermnetnz.org and search for GD they have pages of photos and we with GD manifest slightly differently. I did find photos similar to mine, but all the photos on this site showed the rashes to be more advanced than mine, wow, as miserable as I was I felt grateful mine was not as physically advanced. However on the inside I was suffering as I had intense itching and pain. Many do not get the pain.
I never noticed that steroids helped and tried topical steroid and an injection. I never took oral steroids. Steroids did help with ACD, but if exposure to allergen was still present symptoms would reoccur.
Diet for me was an act of desperation. Like you felt I had a healthy diet. I have a big appetite and eat as much as my 250 lb husband and I weight half of that. I never dieted in my life so was unprepared for how challenging it would be. I could eat all the meat and safe veggies I wanted but giving up fruit was really hard. I used to eat at least 4 pieces daily. Now, after detox, limit myself to one small piece or half of a large piece. I didn't go on this diet plan because of GD but because of ACD. I don't know if it helps with GD, but it won't hurt you to give it a try.
Like you was shocked that so little is known about eczema. All the research money goes into diseases that kill us and yes eczema may make us wish we were dead but it doesn't kill us.
Hang in there, our first breakout is the worst. None are good, but usually don't last a long as the first one.

@gardeningjunkie-you say(said)"Because of this site we have read that cilantro works as a heavy metal detox ". I have posted on this blog but my posts didn't appear until much later. Here's my point, big or nothing at all: Everyone here in the 'Cilantro Club' has been experiencing results, mostly good, or even mildly good, which as a sufferer from GD is a god send. I'm one too. I'm writing this during the CoVid-19 Lockdown so access to fruits, Veg's etc. is not always easy. On to my query: Has anyone here ever thought that maybe, just maybe, the 'cause' of their GD could be related to a heavy metal presence in their body/blood? And maybe, just maybe since Cilantro is known to help remove toxic heavy metals, that is the reason for the vast improvements people are experiencing? I had a Total Knee Replacement done in 2018, and in 2019 I developed a rash at the site of the operated knee. Recently I opted to have a metal sensitivity test done and found that my Aluminum level was way high, over the High level even. To-date there is no explanation as to how and why. BUT in Jan. 2020 I started a new rash, thinking it was related to the other, but it turned out to be (via Biopsy) Grover's. I still don't know how my Alum. level came to be so high so I am about to 'gasp' try the Cilantro route and if it works and IF my Alum. levels also decline, then there could be a definite co-relation between GD & Heavy Metals. Just sayin'. My GD is restrictive, and intereferes with my daily life and activities, sleep especially as I now am lucky to get 3-4 hours of sleep a night. Itch/Scratch etc.

Thanks for your reply. I am on Accutane 10 mg. which is a much lower dose than you were taking. I spoke with my Dermatologist yesterday and she doesn't want to increase the dosage yet pending lab tests in a few weeks(4) to see what effect it may have on my Liver. Meanwhile I am suffering from lack of sleep. irratability, poor personal thoughts, and more, not the least of which is constantly scratching some part of my body (Head, Neck, Chest,Arms, Legs, etc. etc.) I can't go more than 30 seconds without having to scratch.

@mnitchke Because you mentioned "poor personal thoughts" I want to make you aware of the fact that Accutane can have the side effect of suicidal tendencies. I know this because of a personal experience with someone who took it for teen age acne and tried to overdose, unsuccessfully, thank goodness. A great deal of research was done and we found many teenagers were suicidal who were on Accutane and, when stopped, the tendencies disappeared. Everyone is wired differently so this is not true for all but if there is the slightest chance that you can react this way you should know it. We all care about you on this site and want to protect you and befriend you with our knowledge. You can try topical lidocaine, which is an anesthetic, slapping, which is better than scratching and of course the cilantro because you have nothing to lose and it will not harm you.
From the Internet: "While you (or your child) is taking Accutane, watch for any symptoms of depression, like:
Changes in mood and behavior.
Feeling unusually sad, angry, irritable, or aggressive.
Trouble concentrating.
Suicidal thoughts, or thoughts of hurting yourself.
Seeing or hearing things that are not real."
You can research even more. I know some have been helped by Accutane but I do not believe it is worth the risk.

I haven’t been on this site for a week a so but this last post of yours got my heart. I’m so sorry you have been so itchy and having poor thoughts and your sleep routine is off. All not helping your situation. As you have figured out by now we have all been down this road, on this road or will be back on this road again depending on the triggers. Not fun. Thanks to this site my tool belt had gotten larger and when I’m having a bout of GD there’s a few things I try that I have learn from all these wonderful people. Being in California this heat and sunshine is not the blessing others thrive on. So glad of all this knowledge I have gained being on here. I wish I could think of some smart thing for you right now with the itchies from hell you are dealing with at this moment. I’m thinking positive thoughts for you. You are not alone in this.

In order to be eligible to even get an Isotretinoin prescription, your Doctor has to sign you up for the "I Pledge" program. A strictly enforced program to refill the monthly prescription that must be updated by your Doctor every month that you are closely monitored with blood tests, no pregnancy as it causes severe birth defects, and changes in mood, behavior, etc. You will not even be able to fill or refill prescriptions without being enrolled this program.
https://www.ipledgeprogram.com/iPledgeUI/home.u

Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

Hi @alyssar and welcome to Mayo Clinic Connect. You'll notice that I moved your message to the main discussion about Grovers disease. I did this to introduce you to other members who actively participate in this support group, like @gardeningjunkie @jbd3 @nodgabnoj @mariannj @mnitchke and many more. You can click VIEW & REPLY to scroll through past posts.

I'm happy to hear the you seem to be at the end of a flare. Good for you for asking for tips on getting back to post-flare life and how you can avoid another outbreak.

Alyssa, was this your first experience with these symptoms? Did you doctor diagnose it as Grovers?

You got my attention when you mentioned fiberglass-like pain. All your issues- burning, itching and fiberglass pain pretty much sums it up for me too. My first outbreak lasted a year, how long was yours? I too hope you are at the end of this breakout, sadly for most of us it comes and goes. For me steroids never helped with GD.
I have resumed my normal outdoor activities as I am in remission, but I have avoided taking hot baths in my bubble tub out of fear. Because I also have another form of eczema avoid all treated water like pools or hot tubs. Hot water when GD is active for me hurts along with heat, sweat and friction
Have you read this entire blog. Really crucial information was shared around Feb of 2019, read all our posts as finally I found something that has helped me.