Grover's Disease: What works to help find relief?
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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I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil - Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.
Thank you, will do!
Thank you for your post. Its so good to know that It gets better! I had my first episode in the fall. That’s when I was diagnosed. It improved after 2 weeks of the triamcinolone. Then just about 2 weeks ago it started up again. I have been reading more about it and am avoiding triggers but just couldn’t take it anymore so I broke down and started the steroid again about 3 days ago. I have improved some so I would like to discontinue it. I’d prefer to avoid it as much as possible due to potential side effects. But I am afraid if I stop too soon symptoms will return. I understand the issue with heat, sweat, and the friction. I could hardly stand to have any clothing touch my back! I made a loose halter top out of a cut up and safety pinned beach towel to wear around the house! I have had to use cold packs to cool off just laying in bed! I am so grateful to have found this site! I will look up the posts you referred to. Thank you for the advice. In the meantime, if you are open to sharing what worked for you I would love to know. How long did it take for symptoms to resolve completely? When did you resume your outdoor activities? Thank you again for sharing.
Very helpful clothing advice! Thank you 🤗
You are lucky the steroid is helping you as I found nothing really made any noticeable difference until I tried drinking a daily cilantro smoothie. That subject is covered in the posts I mentioned. From all I have read it helps about 50% of us. Cilantro is a heavy metal detox and heavy metals are tied to Grover's and Parkinson's (my brother has Parkinson's). They say GD is not heredity or contagious but one of my sisters also has GD.
I am obsessive about being outdoors and never totally gave going outside even in summer when my breakouts were bad. What I did was try to get outside by 6:00 am and in by 10:00 am. I did find I would need to give myself a day off and stay inside every few days. Heat, sweat and friction are triggers for most but I have also started a breakout in January so for me the rules often don't apply.
Once inside the bra comes off in fact all underwear does(can't stand anything around the waist) and I wear old lady 100% cotton house dresses inside. Never ever thought I would dress like this, yet when symptomatic like you mentioned our skin hurts all the time and tight clothing really hurts.
My symptoms never totally go away. Our skin is permanently changed, our collagen has separated and our cellular structure is not tight anymore. I always have a few scabs or small bumps especially along my lower spine. I got excited thinking they had all fallen off the other day but they had just sloughed off and are back in the same places. Maybe only 10. When broken out I can have hundreds and maybe a thousand. If I press my skin on my upper back I can feel little bumps under the skin. I know they are just waiting, even though they don't itch now. Although I have had this now for at least 5 years be hopeful in that the 1st breakout is usually the longest and more excruciating. My subsequent breakouts normally lasted about 5- 6 months until I started with the cilantro.
Because of cilantro I have broken my re-occurrence cycle and been clear for 1 year now, except for a rash mistakenly assumed to be GD as it was on my lower back torso and my derm said it was 100% related to the adult shingles vaccine I had gotten earlier in the week. The rash was more plaque like in appearance and not my usually hundreds of little bumps. It went away after 2 months. It felt very similar, yet not as bad as GD, but shingles is reported to feel much like GD.
I do wonder about those that have success with steroids. Often when they stop them the GD comes back with a vengeance. It seems it needs to run it's course and it can be delayed or stalled but then catches up when off steroids.
Keep searching the internet, have heard Facebook has a good site, but this site has been helpful for me. If it hadn't been this site I would have never learned about cilantro.
Thank you again for the great info. I have been reading posts since our last post. I started at the beginning and have a lot more to go. But its all good info. I especially liked your clothing suggestions you have made. Your symptoms really resonate with me. Also giving up sugar seems like something I may need to do as well. Cilantro sounds like a definite no brainer as well! Good stuff! Much appreciated! You are an inspiration! 🙏💪
Lots of info about GD tied to heavy metals, Google it. You have limited options because of implant but it sure couldn't hurt you to try the cilantro. My only negative side effect after consuming 1/2 large bunch daily for 9 months was some darkening of pigment spots on my cheeks. Reading on the internet this can happen when consuming too much cilantro. I gave it up at that time because I thought I was getting another GD recurrence so why take it , but turned out my rash was a reaction to the Shingrex vaccine. Once this reaction cleared up in about 2 months I didn't go back on cilantro. Still in remission and am gardening about 5 hours a day right now, but temps have been comfortable so not sweating yet. I'm realistic, I know it will return someday but it's been a year now.
Thank you for that. I had never heard of these mites. One more avenue of investigation. While tea tree oil may be helpful, one study looked at peppermint oil and salvia oil applied at 100% strength. These essential oils killed mites within 10-15 minutes. Oils feed the mites. The recommended essential oils are applied after alcohol is topically applied. I’m going to try these oils. I am grateful for this new (to me) information.
I found the latest info on GD from Medscape dated Saturday 18 April 2020 to be very informative for all my fellow sufferers.
Google - http://www.medscape.com/answers/1124347/-114031 and be sure to read all the linked articles. Chin up everyone.
I'm a bit confused. Why would you stop taking cilantro because you were getting another GD outbreak? I thought that was the whole point of taking it in the first place. So at what point do you think the cilantro should be taken ?