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

Posted by 43219876x @43219876x, Sep 23, 2016

I have been diagnosed with Grover's disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?

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jmc159 | @jmc159 | Feb 16, 2020

In reply to @sfchavez "I just joined as I believe I may have Grovers. Went to Urgent Care yesterday and..." + (show)

I never had any itching, even when my Grover's flared the most....just the rash spread over my torso. Daily CeraVae moisturizing cream
seems to do the trick (basically no rash at all)!

sfchavez | @sfchavez | Feb 16, 2020

In reply to @jmc159 "I never had any itching, even when my Grover's flared the most....just the rash spread over..." + (show)

Interesting! I hope to find out for sure at my dermatologist appointment. Did you stop working out or stop anything that caused sweating? I love my spin classes and infrared sauna... I can’t imagine giving up completely.

gardeningjunkie | @gardeningjunkie | Feb 16, 2020

In reply to @dazlin "@gardeningjunkie ....I remember well we spoke in length about all our symptoms and remedies. I just..." + (show)

@dazlin

@gardeningjunkie ....I remember well we spoke in length about all our symptoms and remedies. I just dont post here very often, but I do check in from time to time...so I remember you very well. You've been helpful. As for MGUS related to lymphoma, I have no idea. I did specifically ask my oncologist last year, and he said I have IGG KAPPA, with very low IGM'S which are the healthy main white cells to fight infection. One thing I believe, my rashes started 1st, then I was diagnosed with MGUS. I'm sure drs aren't connecting the dots on the two, but I feel something is wrong. There's really not much more they could do for me, except monitor my bloodwork, and see derm for skin issues.
I did take photos of my body when I broke out badly, and scabbed, because by the time I get an appt I'm almost healed, so I don't think they believe how sick I felt. I dont have pain, but, I had severe fatigue, and chills...I think the papules may hurt. I'm so done with witch hazel and every topical, yes, I've eaten cilantro...not doing that every day. I even shaved the papules and applied peroxide, out desperation, or maybe I was losing my mind(no sleep)...I slept with a brush so I could scratch after hours of resisting...(mental torment). One night back in 2013, after a day the beach, I thought maybe the sun and salt water would draw out the rash. The complete opposite happened that night, so, so, bad, covered in red itchy hot bumps. I literally sat on the bathroom floor and cried...I took my shaving razor and shaved off the rash...then drenched myself in peroxide. The stinging burn was actually a relief. Looking back, I feel so bad I resorted to desperation, and did that. Thankfully, now, if that happens I've got meds and prescription cream.
Nice of you to look up MGUS, and informing me. I'm not ruling out lymphoma, because I've had enlarged lymph nodes , one surgically removed in 2014, but tested benign...all so very strange.

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I understand what you mean by stinging being a relief from itching. I wonder if acupuncture has that effect- ones nerves focus on the needle prick with acupuncture and the itch is not the focus of the brain. I so get how lack of sleep will drive us insane- I would lay in my sleepless bed and plan ways to kill myself- yet that was not with GD, believe it or not the itch, sting and burning skin was worse for me with my Allergic Contact Dermatitis before I got diagnosed after having the 5 Day Extended Patch Test. Avoidance of allergens is key to controlling those rashes and sensations and surprisingly have had dramatically fantastic results giving up processed sugar and limiting natural sugar.
When I looked up MGUS it did state that it can mutate into lymphoma and also that rash could be one of the side effects. Good news you tested benign to lymphoma which is truly a concern. There was no description of the rash. Heck you could have GD along with rash effects from the MGUS.
I never tested positive to GD with biopsy, but my symptoms are classic and I do have it. Yet if you tested negative to lymphoma in 2014 you clearly didn't have it then or you would be symptomatic by now, more than just enlarged lymph nodes. Lymphoma was a big fear for me, it's a tough one. It's good you still have your blood tested, I used to have it done semi-annually but now just annually just in case the leukemia returns.
We both need to seize the day because we are surviving and our skin right now is a good as it ever will be!!!!

tonya1018 | @tonya1018 | Feb 17, 2020

Hi all. I'm a 47 year old female and was diagnosed with GD about 15 years ago. It's never gone away but does get worse and better at times. Since neither my diagnosis nor its longevity seem to jive with everything I've read about GD, a dermatologist did another biopsy last year and once again it came back positive for GD. I just finished a round of Whole 30 and did not notice a difference. I typically limit dairy and gluten in my diet anyway. It's only ever been on my upper abdomen and can be very painful at its worst. I've tried different dermatologists, used cortisteroids and whatever other creams have been prescribed over the years, use products for sensitive skin and eliminated fabric softener. Very frustrating. One thing I've noticed lately is that my skin is very itchy on my arms and legs (not where my bumps/GD is located). I'm at my wit's end with this--just curious if I'm the only one out there who's had this experience. I've been reading a lot of great information on this site so thanks everyone for sharing.

gardeningjunkie | @gardeningjunkie | Feb 17, 2020

In reply to @tonya1018 "Hi all. I'm a 47 year old female and was diagnosed with GD about 15 years..." + (show)

tonya- keep in mind many of us collect types of eczema as we age. I began with one form, Allergic Contact Dermatitis, ACD and now have three. GD was the 2nd type in my eczema collection. Make sure your doctors keep an open mind and not simply lump all your skin symptoms as being related to GD because different types often have different triggers and treatments. If I were you I would ask about the symptoms on your arms and legs being caused by ACD. Fibers, detergents, preservatives and hundreds of everyday contacts can trigger itching on the body and may not even be represented with rash. The Five Day Extended Patch Test can diagnose ACD, a common form of eczema. Google this test.

lplaw | @lplaw | Feb 18, 2020

In reply to @tonya1018 "Hi all. I'm a 47 year old female and was diagnosed with GD about 15 years..." + (show)

I have the same thing, itchy skin where I have no bumps. My dermatologist kept saying that she thought something else was going on with me. Finally, I showed her an area on my thighs that turns bright red and burns like fire when I scratch. She diagnosed me with dermographia. She put me on a low dose of doxepin ( 3mg. twice day) and a low dose of non-drowsy Allegra (60 mg.) I am feeling much better after taking it for a few weeks. It is the first relief I have had in two years. Your issue may not be the same but I hope this helps. Good luck!

billjim651 | @billjim651 | Feb 23, 2020

Are hot flushes associated with GD?

groversufferer | @groversufferer | Feb 26, 2020

In reply to @kg7382 "Sorry to hear your husband is dealing with this. Interesting about the Vitamins. I was just..." + (show)

Have you had any cures?

kimass1 | @kimass1 | Feb 27, 2020

In reply to @billjim651 "Are hot flushes associated with GD?" + (show)

Not sure, but I get them. I am also post menopausal so there's that ! 😉

kimass1 | @kimass1 | Feb 27, 2020

In reply to @groversufferer "Have you had any cures?" + (show)

The Cilantro smoothies seemed to have "cured" or at least put some into remission.

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