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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Thanks for the info about the hydro. I see my cardiologist next week and need a refill and will ask for more info on this drug. Surprising information about effects of tapering off. I didn't realize this was addictive like opium. I read the literature and wasn't alarmed by the warnings. The cardio also tried prescribing me Xanax and I tried one pill and hated it. It made me feel spacey-weird. I really resisted asking for something to help with stress as my mother was into Valium and Vodka so I have always been fearful of addictive drugs.
You mentioned seeing an oncologist, they are much better at filling prescriptions we request as I learned. I survived Leukemia, do you have an active cancer? Forgive me if you already told us, but with so many bloggers I loose track.
I have had GD for about 6 years with my 1st, 1 year outbreak the most debilitating. It sounds like you go into remission at times like many do , myself included. Even when not symptomatic my torso skin is hypersensitive, but the pain and itching are so minor; not an issue. I will always have a few scabs from papules even when not in an outbreak.
Hoping we stay in remission, but I am realistic and know that's not realistic.

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@gardeningjunkie

Thanks for the info about the hydro. I see my cardiologist next week and need a refill and will ask for more info on this drug. Surprising information about effects of tapering off. I didn't realize this was addictive like opium. I read the literature and wasn't alarmed by the warnings. The cardio also tried prescribing me Xanax and I tried one pill and hated it. It made me feel spacey-weird. I really resisted asking for something to help with stress as my mother was into Valium and Vodka so I have always been fearful of addictive drugs.
You mentioned seeing an oncologist, they are much better at filling prescriptions we request as I learned. I survived Leukemia, do you have an active cancer? Forgive me if you already told us, but with so many bloggers I loose track.
I have had GD for about 6 years with my 1st, 1 year outbreak the most debilitating. It sounds like you go into remission at times like many do , myself included. Even when not symptomatic my torso skin is hypersensitive, but the pain and itching are so minor; not an issue. I will always have a few scabs from papules even when not in an outbreak.
Hoping we stay in remission, but I am realistic and know that's not realistic.

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@gardeningjunkie , as for the Hydroxyzine, idk whether its addictive…my guess is that it makes people sleepy/drowsy like any strong antihistamine, so there may be regulations on dispensing. I was told to double up, so that's why I needed a refill…then nurse said, not appropriate to my pharmacy. Meanwhile she was the one who upped the dose…crazy. But as I said, when I was in full blown rash, hydroxyzine didn't give me those side effects. I think I was so distraught and uncomfortable it would have taken alot to help me…idk. My dermatologist at Mayo then prescribed plenty of hydroxyzine with refills for 1 year after seeing me and taking 3 biopsies…no problem at the pharmacy or insurance…go figure .
Yes, I see oncologists at Mayo clinic every 4-6 months to monitor my MGUS.
I also truly hope we get through this spring and summer, rash free!! I'm a little worried I'll admit, because I've been getting pop up rashes, and feeling itchy already. I can deal with that, but not all over my body with those papules, UGHHHH!!

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I just joined as I believe I may have Grovers. Went to Urgent Care yesterday and doc couldn't figure it out… didn't think to ask of Grover's at the time. Going to my dermatologist on Thursday this week. No itching at all… no pain, no other symptoms… but red spots on my chest that look like bites. Can you have Grover's with no itch? It flared after I did a home sauna session… however, I've been doing my sauna (and other sweaty sports) for over 20+ years. Is this something that can happen so suddenly?

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@dazlin

@gardeningjunkie , as for the Hydroxyzine, idk whether its addictive…my guess is that it makes people sleepy/drowsy like any strong antihistamine, so there may be regulations on dispensing. I was told to double up, so that's why I needed a refill…then nurse said, not appropriate to my pharmacy. Meanwhile she was the one who upped the dose…crazy. But as I said, when I was in full blown rash, hydroxyzine didn't give me those side effects. I think I was so distraught and uncomfortable it would have taken alot to help me…idk. My dermatologist at Mayo then prescribed plenty of hydroxyzine with refills for 1 year after seeing me and taking 3 biopsies…no problem at the pharmacy or insurance…go figure .
Yes, I see oncologists at Mayo clinic every 4-6 months to monitor my MGUS.
I also truly hope we get through this spring and summer, rash free!! I'm a little worried I'll admit, because I've been getting pop up rashes, and feeling itchy already. I can deal with that, but not all over my body with those papules, UGHHHH!!

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I checked out MGUS and read about it forming in the bone marrow, it's related to lymphoma and lymphoma is related to leukemia. Something going on with our immune systems. Many with Chronic Lymphocytic Leukemia, CLL the type of leukemia I had have the disease mutate into Lymphoma.
Yes summer is a season to dread, especially since I am obsessed with outdoor landscaping. I have had to discipline myself to get up at dawn and be back inside no later than 11 in the summer. Shower immediately. I prefer to do house chores first then garden, but must reverse that order. When in a hard breakout any heat causing any sweat hurts so any outdoor activity with exertion is off limits.
All my subsequent outbreaks have been somewhat less severe in rashed areas and duration than my initial one year complete wrap around torso rash. Yet itching is itching. One mosquito bite can be maddening and a lesser outbreak of GD is just about as miserable. At least my sides have always been clear so at night I can lay on them and have trained myself not to move. My last 2 relapses did not cause the severe pain of previous ones.
Did you try the cilantro and witch hazel for control. I know the cilantro stopped one outbreak and the witch hazel used on the few papuales I still get on lower back at waist and across abdomen seems to help heal and control.

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@sfchavez

I just joined as I believe I may have Grovers. Went to Urgent Care yesterday and doc couldn't figure it out… didn't think to ask of Grover's at the time. Going to my dermatologist on Thursday this week. No itching at all… no pain, no other symptoms… but red spots on my chest that look like bites. Can you have Grover's with no itch? It flared after I did a home sauna session… however, I've been doing my sauna (and other sweaty sports) for over 20+ years. Is this something that can happen so suddenly?

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I always had rash with itch. First visit with PCP and wanted me on strong oral steroids which I turned down.Dermatologist simply observed and diagnosed Grover's, but no cure available.

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@gardeningjunkie

I checked out MGUS and read about it forming in the bone marrow, it's related to lymphoma and lymphoma is related to leukemia. Something going on with our immune systems. Many with Chronic Lymphocytic Leukemia, CLL the type of leukemia I had have the disease mutate into Lymphoma.
Yes summer is a season to dread, especially since I am obsessed with outdoor landscaping. I have had to discipline myself to get up at dawn and be back inside no later than 11 in the summer. Shower immediately. I prefer to do house chores first then garden, but must reverse that order. When in a hard breakout any heat causing any sweat hurts so any outdoor activity with exertion is off limits.
All my subsequent outbreaks have been somewhat less severe in rashed areas and duration than my initial one year complete wrap around torso rash. Yet itching is itching. One mosquito bite can be maddening and a lesser outbreak of GD is just about as miserable. At least my sides have always been clear so at night I can lay on them and have trained myself not to move. My last 2 relapses did not cause the severe pain of previous ones.
Did you try the cilantro and witch hazel for control. I know the cilantro stopped one outbreak and the witch hazel used on the few papuales I still get on lower back at waist and across abdomen seems to help heal and control.

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@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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@sfchavez

I just joined as I believe I may have Grovers. Went to Urgent Care yesterday and doc couldn't figure it out… didn't think to ask of Grover's at the time. Going to my dermatologist on Thursday this week. No itching at all… no pain, no other symptoms… but red spots on my chest that look like bites. Can you have Grover's with no itch? It flared after I did a home sauna session… however, I've been doing my sauna (and other sweaty sports) for over 20+ years. Is this something that can happen so suddenly?

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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)!

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@jmc159

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)!

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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.

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@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!!!!

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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.

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@tonya1018

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.

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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.

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@tonya1018

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.

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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!

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