Grover's Disease

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?

@nodgabnoj

Just out of curiosity, how many smoothies do you drink in a day ? In your opinion, does it make any difference if you drink it all at once, or spread it out over an hour. I mix the cilantro with juice, a lot of fruit, yogurt and honey. It actually doesn't taste too bad at all. I haven't tried freezing it as I have access to fresh when ever I need it. I think the cilantro has lessened the itching a bit, just waiting for it to make it disappear. Ha !! Again thanks.

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One glass in the morning. That’s it.

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All at once

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@nodgabnoj

Just out of curiosity, how many smoothies do you drink in a day ? In your opinion, does it make any difference if you drink it all at once, or spread it out over an hour. I mix the cilantro with juice, a lot of fruit, yogurt and honey. It actually doesn't taste too bad at all. I haven't tried freezing it as I have access to fresh when ever I need it. I think the cilantro has lessened the itching a bit, just waiting for it to make it disappear. Ha !! Again thanks.

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nodgabnoj-
In answer to your question I just drank one daily, yet read on the earthclinic GD site that one man who was going on a 6 year initial outbreak drank 6 bunches of cilantro daily- first treatment that ever put him in remission. Perhaps I need to drink 2 a day now.
I do not want to discourage you about trying cilantro. Until about a week ago it had been effective for me. I noticed symptoms beginning on my lower back but didn't want to discuss on this site until I was certain. Yep, the GD is starting up again.No way to ignore the bumps and now beginning scabs on my lower and now upper back. Last night after my shower I made the mistake of rubbing a very itchy papuale on my upper back and that inflamed the area, turning it red and oh my the intense itching kicked in in that spot, used my Flanax which helped to allow for sleep.
I had a 14 months break on cilantro. True the first 6 months of my break was my normal remission pattern, then when symptoms returned I began the cilantro smoothies to have it clear up the new break out scabs within a few months and after starting the cilantro had no new bumps or scabs appear and it never itched. Then had 8 months symptom free so that's my 14 months of freedom. Unlike Frogger I kept up with daily smoothies, even when in remission since starting the in late March 19. I am still taking them now, perhaps this will keep my breakout at a minimum.
I had been pleased I would be traveling over the holidays without symptoms and now must face what I will be coping with,
It seems to me and I have heard others mention this with eczema that diet or meds may work for a while but then stop working, as you know eczema is chronic meaning no cure. I can't think of any changes in my diet, true I am now wintering in an area with low humidity, but have done so for decades. It's also cool and although active outdoors have not been sweating. No change in clothing, grooming or cleaning products.
Please keep up the smoothies, you do have hope it will work for you and I so appreciate the long break it gave me. Like you I am also hoping it lessens the severity. I do know after having GD for about 5 years now each subsequent outbreak, after my initial 1 year of total agony, has been less severe in physical and internal symptoms.
A positive attitude always helps and I am staying positive that this outbreak will be minimal. Yet I know I have at least 100 little bumps and few scabbed already after just a week. Not a good sign.

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nodgabnoj- OMG- Guess what I just thought of. My last post mentioned no change in diet or products or heat or sweat to bring on GD recurrence. I had a shingles vaccine before I got GD in my late 50's without an issue and decided to get the new senior SHINGLES vaccine about 2 weeks ago. Now after being in remission for 14 months since using cilantro my GD is back. You gave a warning call about the senior Shingles vaccine coinciding with your GD. I ignored that based on my past history. What have I done to myself? All I can think of is to drink 2 smoothies daily, yet traveling for a week, such a challenge. I had planned to go off the smoothie like Frogger as I had been clear. I am staying with family and do have access to grocery stores and full kitchen so not difficult to manage that.

Liked by MariannJ

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@gardeningjunkie

nodgabnoj- OMG- Guess what I just thought of. My last post mentioned no change in diet or products or heat or sweat to bring on GD recurrence. I had a shingles vaccine before I got GD in my late 50's without an issue and decided to get the new senior SHINGLES vaccine about 2 weeks ago. Now after being in remission for 14 months since using cilantro my GD is back. You gave a warning call about the senior Shingles vaccine coinciding with your GD. I ignored that based on my past history. What have I done to myself? All I can think of is to drink 2 smoothies daily, yet traveling for a week, such a challenge. I had planned to go off the smoothie like Frogger as I had been clear. I am staying with family and do have access to grocery stores and full kitchen so not difficult to manage that.

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I just read your posts. Again I am pretty sure that it was the shingles vaccine that gave me the GD. The only other thing that I can think of is that I work out quite a bit and I used to get a rash from sweating right around my solar plexus. I could usually eliminate it with a skin lubricant. Strangely, at this point, despite my working out 4 times a week, it seems to be a non issue at that location. I have started the cilantro smoothies, and they seem to be doing a little bit of good. I might try two a day. I find that for me the two worst times are just after I get up in the am and sometime later in the evening. Motrin is an effective itch stopper for me. I am reluctant to take too much of it as I know it has some negative side effects. At one point I was taking 6 a day, and despite my Dr. saying it was well below the recommended maximum, I try to take two at most. I buy the otc, which is 200 mg. Last night a woman I work with mentioned her Dr. prescribed her the 600 mg. for headaches. I never knew there was one and am wondering as to its effectiveness. Of course I could try 3 200's. Who knows !!!! I have seen a bunch of topicals that I never heard of on other people's posts. If I do try any of them and I find them effective I will let you know. I guess the only positive thing I can come up with is, there is a lot of stuff out there that is much worse than gd. Other than it being a major pain in the neck, it doesn't inhibit me in any other way. I wish us both the best. Have a happy holiday.

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In reply to @frogger "All at once" + (show)
@frogger

All at once

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Thanks. I may try two a day. Have a good holiday.

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@gardeningjunkie

nodgabnoj- OMG- Guess what I just thought of. My last post mentioned no change in diet or products or heat or sweat to bring on GD recurrence. I had a shingles vaccine before I got GD in my late 50's without an issue and decided to get the new senior SHINGLES vaccine about 2 weeks ago. Now after being in remission for 14 months since using cilantro my GD is back. You gave a warning call about the senior Shingles vaccine coinciding with your GD. I ignored that based on my past history. What have I done to myself? All I can think of is to drink 2 smoothies daily, yet traveling for a week, such a challenge. I had planned to go off the smoothie like Frogger as I had been clear. I am staying with family and do have access to grocery stores and full kitchen so not difficult to manage that.

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Sorry to hear about your GD returning after 14 months! Thank you for the heads up on the senior shingles vaccine. I had shingles once only at age 19.

Liked by MariannJ

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@nodgabnoj

I just read your posts. Again I am pretty sure that it was the shingles vaccine that gave me the GD. The only other thing that I can think of is that I work out quite a bit and I used to get a rash from sweating right around my solar plexus. I could usually eliminate it with a skin lubricant. Strangely, at this point, despite my working out 4 times a week, it seems to be a non issue at that location. I have started the cilantro smoothies, and they seem to be doing a little bit of good. I might try two a day. I find that for me the two worst times are just after I get up in the am and sometime later in the evening. Motrin is an effective itch stopper for me. I am reluctant to take too much of it as I know it has some negative side effects. At one point I was taking 6 a day, and despite my Dr. saying it was well below the recommended maximum, I try to take two at most. I buy the otc, which is 200 mg. Last night a woman I work with mentioned her Dr. prescribed her the 600 mg. for headaches. I never knew there was one and am wondering as to its effectiveness. Of course I could try 3 200's. Who knows !!!! I have seen a bunch of topicals that I never heard of on other people's posts. If I do try any of them and I find them effective I will let you know. I guess the only positive thing I can come up with is, there is a lot of stuff out there that is much worse than gd. Other than it being a major pain in the neck, it doesn't inhibit me in any other way. I wish us both the best. Have a happy holiday.

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If you are interested as to why you itch more in the evening Google it. It explains about histamine levels being higher in the evening. Lots of dangers in taking too much ibuprofen aka, Motrin the name brand. You need to Google high doses and continual doses and see if the risks are worth it. It does raise blood pressure so I can't take it. It never helped me with itching but is miraculous in relieving arthritis pain, but not worth the raised BP risks, so I avoid it. 800 is the prescription strength Motrin, my mother-in-law used to get that px. Yes taking 4 of the 200's is the prescription level.
The external skin of the solar plexus is very near where many, especially women get a rash under their breasts. My sister also has GD and only gets a rash in this area. She was biopsied and was positive for GD in that area. For her, lucky her, the rash is minor and doesn't expand outside of that area and the itching is only mild and zero pain.

Liked by MariannJ

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@gardeningjunkie

I thought about replacing metal fillings, but after studying the internet I read that actual removal releases more mercury into our bodies than just leaving old fillings alone. I only have a couple and if GD is triggered by mercury or other metals I think it's likely I picked up metals from other sources like seafood or water No metal testing done to other siblings but I have had blood tests and am allergic to aluminum and nickle as well as 3 other metals. Maybe my family has a weakness with metal allergies. As mentioned it's very coincidental that out of 4 children in my family, one sister has GD and my brother now has Parkinson's. My youngest sister is 10 years younger and the 3 of us that are afflicted all came down with GD or Parkinson's at about age 65 and youngest sister is now only 61,

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Unfortunately, I recently had to have a contrast MRI done which they inject Gadolinium metal into your veins which can remain in your body for several years with unknown effects.

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@zeke1

Two months ago I too was diagnosed with Grover’s Disease. It is VERY itchy. Is your Grover’s very itchy? It’s so itchy, and it’s worst in the evening, so I can’t help but think it could be scabies. However, two biopsies have come back negative for scabies and “consistent with Grover’s disease”. A 20 day course of prednisone did relieve the itch quite a bit and the rash got better and almost went away. But it came back once I was off prednisone. I am on a topical steroid that helps with the itch for a while, then it comes roaring back. What to do?!?!

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try liberal covering with OTC Witch Hazel solution twice daily; took ~ one week to clear & I struggled for years. hope it helps you too!

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Merry Christmas to all on this group who have sustained me through the intense itch/pain of Grovers. Thanks to cilantro and cotton I am a new person. My only recurrence since January was two months ago when I needed to use heat for an injury on my back. I got some outbreak there for the first time but discontinued the heat immediately and went to ice again. Some days I skip a smoothie but I have found the health benefits to be too wonderful to ignore. I always use frozen cilantro now. The Grover's disease Facebook support site has many members reacting positively to the cilantro also. The word is spreading.

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@mariannj

Merry Christmas to all on this group who have sustained me through the intense itch/pain of Grovers. Thanks to cilantro and cotton I am a new person. My only recurrence since January was two months ago when I needed to use heat for an injury on my back. I got some outbreak there for the first time but discontinued the heat immediately and went to ice again. Some days I skip a smoothie but I have found the health benefits to be too wonderful to ignore. I always use frozen cilantro now. The Grover's disease Facebook support site has many members reacting positively to the cilantro also. The word is spreading.

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Hi, I am struggling with this miserable disease and trying, like every body else to manage it. I do take two smoothies a day, but I don't freeze my cilantro. Do you think there is a benefit to doing so ? I will try it. When you mention cotton, what are you referring to ? Witch Hazel ? I am going to run right out and buy some. How do you make your cilantro? I use a lot of fruit, honey and yogurt and worry that I am putting too much stuff in it possibly off setting the benefits of the cilantro, although I don't see how that could effect it. Any advice you can offer me will be much appreciated. Thanks very much, Happy New Year.

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Dermatologist could only prescribe meds to relieve some itching; on a whim I applied the Witch Hazel and rash is gone.

Liked by kimass1

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@nodgabnoj

Hi, I am struggling with this miserable disease and trying, like every body else to manage it. I do take two smoothies a day, but I don't freeze my cilantro. Do you think there is a benefit to doing so ? I will try it. When you mention cotton, what are you referring to ? Witch Hazel ? I am going to run right out and buy some. How do you make your cilantro? I use a lot of fruit, honey and yogurt and worry that I am putting too much stuff in it possibly off setting the benefits of the cilantro, although I don't see how that could effect it. Any advice you can offer me will be much appreciated. Thanks very much, Happy New Year.

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I used to take a cup or two of cilantro (frozen only because it's easier to keep and crush in blender) I would just blend it in orange juice and a yoplait flavored yogurt. Once daily. after about 2 months my GD had stopped in it's tracks but I kept with it for 10 months. Had another biopsy done and there was no trace. I stopped the smoothies but will go back on them if I start being symptomatic again.

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@kimass1

I used to take a cup or two of cilantro (frozen only because it's easier to keep and crush in blender) I would just blend it in orange juice and a yoplait flavored yogurt. Once daily. after about 2 months my GD had stopped in it's tracks but I kept with it for 10 months. Had another biopsy done and there was no trace. I stopped the smoothies but will go back on them if I start being symptomatic again.

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Sounds similar to my experience

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