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

Remember your outside symtoms are just a part of what is going on. Inside your skin the layers have to heal first. At least we can hide our scabs and bumps. The blessing for me was the relief from itching and pain which came before all the scabs feel off. I can actually rub the skin on my back and not flinch or hurt now, yet I am so "shell shocked" from living with this misery I don't belive I will ever have a professional back massage again.

I am 67 yrs old and have had Grovers on and off for the past 6 years. The itching was intense . The dermatologist prescribed Halobetasol Propoinate ointment 0.05%. It is a life saver as far as the itching goes. I have it now but this year the itching hasn’t been bad but it’s not pretty to look at. I just wish I could find something that makes it look better now. I’ve tried apple cider vinegar, Vick’s and hrdrogen peroxide as well as some medicated powders. Nothing seems to help.

Have you tried the cilantro heavy metal detox many of us have had success with?I think it helps about 50%. Heavy metals are tied to GD as well as other diseases like Parkinson's, Alzheimer and Dementia. Check out the posts on this site starting Feb 2019 by Kimass1. You will get the blogging history of those that us that tried it. I had GD on and off for 5 years and this is the first summer I have been free of the misery which you understand all too well.

Fellow GD sufferers a couple of questions to run by you. Appreciate any responses from your experiences:
1- Is a bright pink or red rash a symptom of GD? I have what resembles a sunburn all over my neck and chest. Very irritated and itchy.
2- Is GD contagious? I didn’t think so but my gentleman friend seems to have pustules on legs and arms that are similar to what I had last winter.

Thank you.

Those are not the symptoms of Grover’s. GD is also not contagious.

Fwiw, my own experience/impressions:

1) I too have the pink rash. My GD started with itchiness and a few bumps on my face, which a doc diagnosed as rosacea. It progressed to my neck, which looks more like the pink rash you describe, then to my shoulders, back – where it was diagnosed as GD based on a punch biopsy – and also went to my chest, where it started out looking like the GD but at some point really seemed more like the pink rash. Then it went to my armpits, and it's currently bothering me most in my inner elbows – in both those places, it's the pink rash.
By pink rash, I mean something that may not have the larger bumps I got with GD but extremely itchy, often very bright pink especially in the folds of skin, often with smaller bumps. The bumps I'm calling GD may be pink, but they're not necessarily surrounded by pink, inflamed-looking skin; they're sort of more isolated, like a mosquito bite.
gardeningjunkie suggested the pink rash is atopic dermatitis, and it does look like the photos of that disorder. My doc never mentioned any separate diagnosis for it, although I don't think he thinks it's GD, since it prompted him to test me for allergies.
All of it seems to have developed in a slow but steady progression downward from my eyebrows; my own thought is that the two kinds of rash are connected but manifest differently in different types of skin – the GD in areas where the skin is thicker and tougher, the pink rash in areas where the skin is more tender and moist – but I've never seen or heard anyone else express that theory. No treatment of any of it has done much for me, except for varieties of cortisone cream, which does have the hazard of thinning the skin, so it's been kind of an awful balancing act.

2) Demodex are a suspected factor in GD, and my problems started while staying in the least-clean BnB I've ever stayed in. I've wondered whether there's a particularly virulent strain of the bug, but at this point I've tried everything to get rid of/control them and have to conclude they're either gone or immortal. I've seen occasional other stories, though, of people seeming to catch GD from a mate, and wondered if demodex could have something to do with that.
On the other hand, it also seems to me that a lot of people develop these kinds of rashes as they get older – one of my parents did – so I'm thinking it may be at least partly a matter of our skin becoming more vulnerable to malfunctions of some kind, so that when similarly-aged mates develop similar problems, it's just because they're similarly-aged.

Many interesting theories. Remind me, did you try the cilantro detox? I've been taking collagen supplements for about 5 months now as GD is caused by our collagen separating and not holding our skin cells together. Still clear now after heavy metal cilantro detox. My first hot sweaty summer free of GD pain and itching in years.

I haven't managed to do the cilantro detox per se – I tried it briefly, but the fresh cilantro available here wasn't all that fresh (shot through with bits of black slime) and took forever to clean – maybe this was when it wasn't in season? In lieu, I've been using Metal Magic, which supposedly has lots of cilantro and chlorella, which I understand are best taken together. I've been using it per the label for about 5 weeks without noticing any improvement, but I intend to stick with it for a while longer.
That said, I'd say that my GD has generally gotten less severe – not because of Metal Magic, but before that. Some bumps seem to be permanent, and permanently itchy, but there are fewer of them, there's much less scabbing, and the GD itching isn't such a torment.
The pink rash, however, is driving me nuts.

Grovers is not mentioned in this article but I thought it to be interesting in understand the itch syndrome.

As most of us know, a good scratch can satisfy an itch. Yet the question of why we itch and scratch in the first place has baffled researchers for years. Recently, however, science has begun to enlighten us to the mechanisms at work in the itch–scratch cycle.
For years, the itch sensation was thought to travel along the same nerve pathway used by pain signals. Itch, in fact, was considered a weakened form of pain. Modern molecular, genetic, and anatomical studies now indicate that itch usually follows its own distinct course, says Qiufu Ma, PhD, an HMS professor of neurobiology who has studied the phenomenon. Itch runs along a neuronal interstate highway system that links the skin, the spinal cord, and the brain.
Itch and pain represent different sensations that evoke distinct behaviors. Place your hand on a hot burner and you instantly pull it away; the pain is intense. By contrast, when a piece of clothing brushes against your bare forearm, you scratch to quiet the irritation, giving little thought to the sensation and your reaction to it.
“These distinct behaviors likely developed to protect us against different types of threats,” says

Anne Louise Oaklander, MD, PhD, an associate professor of neurology at HMS who studies chronic pain and itch. “Pain is obvious and, without it, we wouldn’t live long—there would be nothing to prevent us from putting our hand into a fire or onto that hot burner. ” She adds that the itch–scratch cycle most likely evolved to protect us from small, clinging threats—insects or plants—that can be avoided by withdrawal movements.
A scratch for every itch
Previously, few studies focused on the neural mechanisms associated with itch, but several recently have succeeded in identifying a neural component to the itch sensation and its scratch response. In 2009, neuroscientists at the University of Minnesota identified part of the mechanism by which scratch relieves an itch. They showed that relief takes place deep within the spinal cord along the spinothalamic tract. The STT transmits information about sensations, such as pain, temperature, touch—and, it turns out, itch—to the thalamus, deep within the brain. This relays the information to the brain’s center for perceptual awareness, the sensory cortex.
In their study, the researchers monitored spinal nerve activity in monkeys whose lower limbs had been exposed to itch-inducing histamine. With each exposure, the monkeys’ STT neurons went wild. But when the scientists used a device that mimics monkey fingers to scratch the itchy limbs, they saw a dramatic drop in STT neuronal activity. This sudden drop suggests that the act of scratching calmed the STT neurons.
In a recent study published in the journal Neuron, Ma identified a neural component necessary for the pain sensation and itch suppression that also may help answer the “why do we itch?” question. This component is VGLUT2-dependent synaptic glutamate, a molecule that is released from certain sensory neurons and that serves as a transport for glutamate, the most abundant neurotransmitter in the brain. Ma came across this pain–itch dualism unexpectedly, while monitoring the behavior of mice that had been genetically altered to lose the action of VGLUT2 in a group of peripheral sensory neurons. He discovered VGLUT2-deficient mice developed itch disorders as severe as those found in humans with chronic itch disorders. Essentially, Ma’s research team had created a mouse model that mimics some types of chronic itch in human patients.
“Removing VGLUT2 from pain-related sensory neurons in these mice weakened their responses to acute and chronic pain and caused the sensitization of multiple itch pathways,” says Ma. “The mice began to scratch until they developed skin lesions.”
The VGLUT2 pathway, says Ma, likely quells excessive itching by activating certain inhibitory neurons in the spinal cord or brain.
Insatiable itch
Common itches brought on by a chemical or mechanical stimulus—think mosquito bites and poison ivy—can be treated readily with agents that counteract histamine, a chemical the body produces to fight allergic reactions. A mosquito bite causes the body to release histamine in the area of the bite, turning the skin red and itchy. An antihistamine relieves the itch sensation by preventing histamine from binding to itch-instigating receptors in the skin.
Widespread itch, by contrast, is often caused by diseases of internal organs. More than 80 percent of chronic kidney disease patients have chronic, widespread itch, and some patients with liver disease and non-Hodgkin’s lymphoma also suffer from severe itch. Certain pain medications, such as opiates, can also trigger itching.
Neuropathic itch is a different kind of chronic itch caused by a malfunction of nerve cells. It appears in many of the same conditions that can cause chronic neuropathic pain, including shingles, a very common viral infection. The complications of shingles are a focus of study for Oaklander in her laboratory at the Nerve Injury Unit of Massachusetts General Hospital. Other conditions that can spur neuropathic itch include spinal cord lesions, brain tumors, and phantom limb syndrome.
“Neuropathic itch is ultimately caused by inappropriate firing of itch neurons in the central nervous system,” says Oaklander. “People with chronic itch often feel as if insects are crawling all over them.”
Few remedies are available for generalized or neuropathic itch. A new drug on the market, Remitch (nalfurafine), was developed to reduce itching in hemodialysis patients, and may also prove effective for other types of chronic itch that don’t respond to antihistamines. This treatment is based on paradoxical clinical observations: Morphine, which triggers a response in certain opioid receptors in the brain, suppresses pain but causes itch, while nalfurafine, which triggers action in another set of opioid receptors, suppresses itch. It is conceivable that a combination of morphine and nalfurafine might relieve pain without causing itch side effects. And, if scientists manage to develop compounds that activate the inhibitory pathway discovered by Ma and his colleagues, “we would have a completely novel strategy to treat itch,” he says.
“Scratching,” said the sixteenth-century French essayist Montaigne, “is one of the sweetest gratifications of nature and as ready at hand as any. But repentance follows too annoyingly close at its heels.”
Now that the scientific community’s view of itch has evolved to the point where it’s considered a bona fide and potentially serious clinical condition, people who suffer as Montaigne did—his eczema caused him to scratch incessantly—may finally find some relief.
This article appeared in the Summer 2011 issue of On The Brain.
HARVARD MEDICAL SCHOOL CONTACT:
Ann Marie Menting
ann_menting@hms.harvard.edu
617-432-7764

For the curious nonscientist, On The Brain deciphers how the human brain works by highlighting the leading-edge research of neuroscientists at Harvard Medical School and its affiliated teaching hospitals. The thrice-annual newsletter, produced through the Office of Communications and External Relations, is sponsored by the Harvard Mahoney Neuroscience Institute.

Thank you for sharing your insightful experiences.
I was diagnosed past March after suffering for about 3 years. I adopted a Persian cat from a foster situation 4 years ago and she had fleas. I was convinced that my itch and bumps were flea bite related until I finally saw derm who did a biopsy and confirmed GD. The bumps and itching are much less severe but I have occasional flare ups in strange places including under my eyebrow and inside of thighs.
I use the steroid cream daily but concerned about side effects over long term. My skin is already ravaged by age and sun exposure. Hope to find a more benign product at drug store for the red rash. Will also see derm again soon.
I was wondering if it’s herpes related. The pustules on my belly last winter were dreadful and I thought possibly shingles. As many of you know this disease really affects our quality of life and sleep, yet with covid and people suffering and dying I don’t feel I should complain. Praying for remission.