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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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gardeningjunkie | @gardeningjunkie | Jan 26, 2019
In reply to @ptownmama "wow! Thanks for sharing! I'm not sure hubs can give up beer... lol." + (show)
@ptownmama

wow! Thanks for sharing! I'm not sure hubs can give up beer... lol.

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I say to those not willing to give up a food or drink which may be the culprit- "You are not suffering enough". Due to other health issues I gave up alcohol over 3 years ago and believe me it was hard hard hard!!! I loved my vodka and red wine. Now I never think about it. I had a gathering at my house today serving beer and wine and was perfectly happy with my water. It can be done. Surprisingly it was just as hard for me to give up my sugar recently, yet going on over 3 months now and I am not kidding but I don't think about it any more. I do wonder how opium or oxicotine addicts succeed.

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secreto | @secreto | Jan 29, 2019
In reply to @kg7382 "@secreto sure happy to share. Here’s the complete story ... My first outbreak, he gave me..." + (show)
@kg7382

@secreto sure happy to share. Here’s the complete story ... My first outbreak, he gave me just mometasone 0.1% cream. It took several months of treatment and did clear up (mostly). Then round 2 came, I used the same cream to no avail. I went back to see him as I thought I was going to scratch my skin off. He then said he though I had a secondary yeast infection. As a nurse, I’ve treated a lot of yeast skin infections and it didn’t present like a classic looking case. But I trusted him. He gave me oral diflucan 150mg with a second dose 5 days later. Then added Mupirocin 2% cream. I mixed the two creams together for months 2x day. I stopped the Mupirocin when the aweful itching subsided - did an extra week just in case. (Yeast is sneaky and will come back.) I’m pretty close to having this outbreak cleared up (fingers crossed) and just down to the mometasone cream now. Hope that helps. 🙂 Everyone seems to have different stories and different successes.

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Thank-you kg. I appreciate your input and your medical background. I am not seeing the dermatologist for 3 weeks. My allergist diagnosed me and has prescribed triamcinolone for the gd, which helps a little. Just hoping my dermatologist has experience with this. I'm thinking of going to UAB or Emory for help.

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1 reply
kg7382 | @kg7382 | Jan 29, 2019
In reply to @secreto "Thank-you kg. I appreciate your input and your medical background. I am not seeing the dermatologist..." + (show)
@secreto

Thank-you kg. I appreciate your input and your medical background. I am not seeing the dermatologist for 3 weeks. My allergist diagnosed me and has prescribed triamcinolone for the gd, which helps a little. Just hoping my dermatologist has experience with this. I'm thinking of going to UAB or Emory for help.

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Hope you find some relief soon!!

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jpearo | @jpearo | Feb 1, 2019

I am a 36 year old male and I’ve had a rash that suddenly appeared on my chest and back. I’ve seen 3 different Drs and two of them suspect Grover’s disease. I had two biopsies done that came back as a drug rash but that can’t be it because I’m not on anything. I’m so frustrated. It has started coming down my arms now. I feel an ugly beast. The rash doesn’t respond to medicine. I’ve started looking up Grover’s disease and found an association with blood cancers. I am so freaked out. I just want this thing gone. I was just prescribed tetracycline so hopefully that does something. I’ve had all kinds of tests and scans so I shouldn’t be worried but I am. I can’t believe how much this has just completely effected me. The rash came on so suddenly. Is there anyone that can give me advice. I’ve also read that people have this for a long time too.

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2 replies
kg7382 | @kg7382 | Feb 2, 2019
In reply to @jpearo "I am a 36 year old male and I’ve had a rash that suddenly appeared on..." + (show)
@jpearo

I am a 36 year old male and I’ve had a rash that suddenly appeared on my chest and back. I’ve seen 3 different Drs and two of them suspect Grover’s disease. I had two biopsies done that came back as a drug rash but that can’t be it because I’m not on anything. I’m so frustrated. It has started coming down my arms now. I feel an ugly beast. The rash doesn’t respond to medicine. I’ve started looking up Grover’s disease and found an association with blood cancers. I am so freaked out. I just want this thing gone. I was just prescribed tetracycline so hopefully that does something. I’ve had all kinds of tests and scans so I shouldn’t be worried but I am. I can’t believe how much this has just completely effected me. The rash came on so suddenly. Is there anyone that can give me advice. I’ve also read that people have this for a long time too.

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@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease. There seems to be an assortment of experiences and treatments. Mine also came on suddenly. I’m a 46 yo female - no meds and no health issues. I’ve been on daily creams pretty much since last summer. A little break last fall. My only risk factor that I can think of is a history of sun exposure 🙁 This is a nice group and lots of experiences that people share that may give you ideas - mostly how to manage it and no complete cures. I hope you get some answers soon!!

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2 replies
jbmakos | @jbmakos | Feb 2, 2019

I have Grovers for 5 years . What you described does not sound like GD to me. GD is an autoimmune problem .

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jpearo | @jpearo | Feb 2, 2019
In reply to @kg7382 "@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease...." + (show)
@kg7382

@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease. There seems to be an assortment of experiences and treatments. Mine also came on suddenly. I’m a 46 yo female - no meds and no health issues. I’ve been on daily creams pretty much since last summer. A little break last fall. My only risk factor that I can think of is a history of sun exposure 🙁 This is a nice group and lots of experiences that people share that may give you ideas - mostly how to manage it and no complete cures. I hope you get some answers soon!!

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Thank you for the reply. It’s almost like the more the drs treat it the worse it gets. I’m really starting to feel ugly and I’m super stressed out.

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jpearo | @jpearo | Feb 2, 2019
In reply to @kg7382 "@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease...." + (show)
@kg7382

@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease. There seems to be an assortment of experiences and treatments. Mine also came on suddenly. I’m a 46 yo female - no meds and no health issues. I’ve been on daily creams pretty much since last summer. A little break last fall. My only risk factor that I can think of is a history of sun exposure 🙁 This is a nice group and lots of experiences that people share that may give you ideas - mostly how to manage it and no complete cures. I hope you get some answers soon!!

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I’ve also worked long hours in the son for many years. This whole thing sucks. I’m almost certain it is GD cause I had a similar smaller breakout on my lower abdomen 2 years ago when I had a massive panic attack freak out and stayed in bed for two months. I started working again and it magically dosappeared. Now it’s back full force. It almost seems like it gets worse with stress which I haven’t read anything g about.

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kg7382 | @kg7382 | Feb 2, 2019

@jpearo https://rarediseases.org/rare-diseases/grovers-disease/ This website gives a nice explanation as to the mechanics to what they believe may be occurring. There are some medical journals where they have explored the autoimmune and genetic etiology of GD but it seems to remain controversial in the literature. I would encourage working with a good dermatologist and symptom management. Sometimes conditions can co-exist - secondary infections. Good luck!!

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1 reply
jpearo | @jpearo | Feb 2, 2019
In reply to @kg7382 "@jpearo https://rarediseases.org/rare-diseases/grovers-disease/ This website gives a nice explanation as to the mechanics to what they believe..." + (show)
@kg7382

@jpearo https://rarediseases.org/rare-diseases/grovers-disease/ This website gives a nice explanation as to the mechanics to what they believe may be occurring. There are some medical journals where they have explored the autoimmune and genetic etiology of GD but it seems to remain controversial in the literature. I would encourage working with a good dermatologist and symptom management. Sometimes conditions can co-exist - secondary infections. Good luck!!

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Thank you. I just need to accept this and find something that works.

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