Mayo Clinic Connect
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?
I can offer you is sympathy but wish I could do more as what you are describing is not like any GD conditon I have heard of I wish there was a hospital dedicated to skin diseases like MD Anderson in Huston. You have to keep trying and another biopsy could help. From my experience biopsies have to be taken at the right stage of a breakout. My GD biopsy was negative. I was almost at the end of my initial GD breakout which lasted 1 year about 5 years ago when I went to a new derm who took one look and listened to my symptoms and immediately told me I had GD. Others treated it like my Allergic Contact Dermatitis, so of course nothing helped previously because basically no meds help with GD. Yet when she took a biopsy it came back negative. She told me at the time of the biopsy that for the GD biopsy to identify GD it needed to be in the active stage. Yes I had the clusters of classic rashes all over front and back torso, upper and lower but they were scabbing at the time of biopsy. All I can think of is for them to accurately find the GD it has to be a fresh active area. Also what is your biopsy testing for? Is it limiting the test to GD? Can they biopsy for hives, shingles or other skin conditions with the same biopsy. You could have multiple skin diseases and your doctors are limiting their ideas to GD.
You are one to study. Have you gone to the New Zealand Derm site, dermnetnz.org, a site which helped me identify one of my 3 forms (once again incorrectly treated as my original form of eczema by derms. Start with a blank slate and search their skin site for your symptoms, not assuming it is GD. This site has the best batch of photos of actual patients with the skin condition. You will find various appearances with each type, even GD as we know has variations, but if you search though the pages you may find a photo of hive like rashes like yours.
I though my GD might be coming back as my lower back in the center was itching, yet confused because upon closer inspection the itchy area was just one wildly itchy non healing bump! Nothing remarkable in appearance but it would not heal for at least 3 months. I could scratch of the scab once crusted to only have it return and never heal. It never had puss and didn't bleed but a bit, like you mentioned. My back in that area is still not smooth as I can feel a few little bumps, but they do not itch. I believe GD permanently has changed my skin layers. This one bump was so itchy it felt like if was dozens of GD papuales. I changed my gardening clothes from loose 100% cotton jeans, held up with a 100% leather belt (I'm not allergic to the 100% or the leather) to 100% cotton bib overalls. The belt and the jeans but pressure right at this bump and rubbed it when bending over. The overalls have zero pressure. I also broke down and used a steroid on the papuale. Steroids never helped with GD. Yet after eliminating pressure and adding a steroid after 2 weeks it was 60% better. Stopped steroid and still better, but scab is still there and will leave it alone this time. I think the friction irritated my GD damaged skin and this papuale may not be GD but simply weak skin. Now just minor non-troubling itch, yet it's not gone. I still make my cilantro smoothie and plan to for life. Still this doesn't account for your random hives, mine seems to be triggered by pressure and it was not a hive.
Your situation really sounds like an allergy the way it moves around in areas not normally associated with GD. Does it happen more if you go outside? I have a friend my age that just this year started getting hive like welts on her arms, legs, scalp, face and even unexposed areas after she gardens. It sure seems like allergies, but when she gardens she never leaves her patio or sidewalk, just reaching into flower pots or little flower beds. No dietary changes. Maybe it's in the air as she lives in a wooded area.
You helped so many of us with your input about cilantro and hope others on this site have ideas for you.
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It is not better or worse inside or out. It is a non discriminatory rash 😊
Exhaustion can stress the body!
I agree Hopefully I won’t have to wait until she goes to school to get relief 🙀
Liked by MariannJ
I am definitely going to continue with the smoothies everyday until I leave. I will take the pills while I am gone. The website for reference is GARD. The antiviral they mention is called Ribavirin and it's the same class of med as the Acyclovir I take. I had asked multiple doctors is there could be any correlation and they say no, but it's clearly written in literature that it can. Maybe I am that 1%….either way I am going to stop taking them and let my body adjust back to before I started and see. What do I have to lose? I may break out with a cold sore, but maybe not. I have decided to get the flu shot tomorrow and I think I will be fine from that.
Thank you for the information about anti-virals, informative article. I will keep the name of these treatments for future reference of course hoping I don't need them. Thanks Collen for your help. I do always wonder about the mention that most sufferers of GD are male. Not so on this site, but I think women are more proactive about personal heath and we also need to share.
My husband suffers from frequent cold sores and takes Valcyclovir, honestly not sure how it works, but it helps control the frequency of his outbreaks. He takes a low dose daily and if he has an outbreak (always at the same spot on his lower lip) he takes an increased dose. This medicine worked better years ago but this year his frequency is increasing.
His last outbreaks have taken a toll and the lip skin has not been healing like it should. I read about Propolis helping heal cold sores as well as eczema. My husband has been trying it on his lip for month now and his lip has healed tissue, no longer raw yet it is scarred. Yet scarred is better than raw. No new outbreaks since using the Propolis. I have him apply it several times a day. I have a bee sting allergy and it is possible it could cause a reaction in for those of us with this allergy. It is basically regurgitated bee spit from plant matter which they use to line the hive to protect it from bacteria. I patch tested myself applying it inside one elbow for a week and had no reaction.
The brand I bought on Amazon is made in Russia, $13.84 for 3, 30 gram tubes. It is called Propolis Ointment Homeopathic. The tube is all in Russian but the box is half English. Great reviews on Amazon. I plan to order some for a friend who suffers greatly from cold sores, her lip hasn't healed completely in 5 months.
My dermatologist seeing three- all suggestion a major hospital biopsy says gd however looks like skin lymphoma.. going for intense blood work i have many allergies hence cannot take certain meds and drinks – cilantro-
I have pain— not so much itch— spreading alll over even private parts ugh!
I am confused still about what you meant by having "many allergies hence cannot take certain meds and drinks- cilantro". I do understand allergies to meds, but what are you allergic to in cilantro?
Like you my pain was my worst symptom with GD, it was severe, although I also had a moderate itch.
What made the diffidence for me for itching in my female privates was a yeast detox and diet plan. Read William Crook Md, The Yeast Connection- basically zero sugar for life, limited natural sugar as in fruit, avoidance of certain carbs, avoidance of all yeast or mold foods, as in peanuts, yeast (yes no bread in any form even in rice), mushrooms plus other tips. It's been a year now since I went on his plan and the difference has been amazing for me. Not only for my female area, but I no longer get the internal stinging,burning and intense pain shooting randomly throughout my body inside my rashless skin and so no longer need a potent corticosteroid shot. This diet did nothing to help with GD.
@gardeningjunkie , just wanted to say, I also take the same meds for cold sores as your husband. They definitely help. I stopped taking them daily, and start up as soon as I feel the first tingle. Also, I found a wonderful ointment on called L Lysine, 1st ingredient is Lysine, comes in a small jar, from Basic Organics. It has an expiration date so you know its fresh. I apply with a Qtip to affected area, sometimes around my nose too. I get very deep sores that bleed and this ointment helps speed healing, as well as the meds. I buy from Amazon for around $6.00. Just a thought for your hubby.
dazlin- Definitely will order the Lysine- thanks for the tip.
Liked by dazlin
I also started back up on L-Lysine daily since I have stopped taking the acyclovir daily. I'm hoping that my GD stays away now that I stopped the antivirals. We'll see. I have also been continuing the daily cilantro smoothies and the itching has resolved tremendously. I am sticking to it up till my trip in December.
Keep it up, for some of us it takes longer for it to totally leave.
I go to my monthly Dermatologist appt today, going to ask to drop my Isotretinoin from 20mg to 10mg. Wanted to try and gradually wean off of it. Also I'm 31 days strong on the cilantro smoothies. Itching is so much better. Not sure if it's related, but for the last two weeks I have had horrible insomina. I do have anxiety and my worry over GD plays a big part in it I'm sure but I've never had sleep issues like this before. I will also be going out of town next weekend and get a chance to try out the cilantro pills while I am gone as I won't be able to have the smoothies for two days. This will be a good test for my week long trip in December.
Liked by gardeningjunkie
In all I ave read nothing has popped up about insomnia with cilantro. Normally we sleep better because the itching is less or gone. Thanks for keeping us informed as we learn from our sharing. As you know we have to work together when our doctor's ideas run out.
I agree, I don't think it's the cilantro, I think it might be the Isotretinoin. I'm going to ask my derm this afternoon and also tell her about the cilantro in case she can relay that to any other of her patients that have GD.
Getting a breakout again. I feel more than festering this time, suddenly overnight it's visible on my chest. Hopefully I will be able to cease this flareup. So disappointed I've been doing great since February. Bought two bunches of cilantro today, smoothie lunch. Will take supplements on off days.
The above photo is the crease all the way across my chest under my breasts (in the middle). Coincidentally, many women say they get GD under the breasts. Seems as no gender preference for this location, happens to me as well (male). This is the only place I get it.
Is there anything different that could have made it flare up?
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