Author Topic: Grover's disease  (Read 940570 times)

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Offline Idaho

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Re: Grover's disease
« Reply #1960 on: Saturday December 08, 2018, 05:40:41 PM »
Hi Kikia,

I was baffled by why it affected the skin on my torso and chest, but not the skin on my breasts.  This makes no sense to me.  I was thinking I was having an allergic reaction to certain shirts and that my bras were helping eliminate the allergy on the area that was covered.  I asked my dermatologist about it and she said: "Grover's does what Grover's wants".  Not really an explanation, but what I'm taking away from my research is that there really is little understanding about this condition.  Your question about does anyone with financial resources have it, so we might have more research and answers is a good one.  Wishing a speedy recovery to all.

Idaho

Offline chazas

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Re: Grover's disease
« Reply #1961 on: Friday December 28, 2018, 09:18:57 PM »
I have had Grovers for a decade or so.  This year I went through a 6 month flare, but am much better equipped to handle it than I was last time.

I was somewhat controlling it with twice daily Cordran lotion, but my skin had enough of that and I had to back off.  Went to every other morning steroid, and good old triamcinilone cream seems to work better for that.  Calcipotriene cream every morning/evening when steroid is not used.

To minimize itch, Zyrtec daily and ever since I had an exczema outbreak on my legs a couple of years ago, Cerave cream everywhere else (with the anti-itch version patted over my treated Grovers areas).

Either this regimen work somewhat, or my flare is dying down naturally.  Take your pick.

Happy new year, everyone.

Offline enomisk

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Re: Grover's disease
« Reply #1962 on: Wednesday January 16, 2019, 05:07:59 PM »
I am a 55 Y/O female that was diagnosed with Grover's disease in November 2018.  It was a BAD case that started in about Sept.  I literally was at the end of my rope.  I could not sleep, or focus on anything because the itch and rash was all over my head and body with the exception of face and legs.  It was relentless.   The only thing that seemed to help was Prednisone (oral Steroids) I had to take up to 40 mg a day to get relief from the INTENSE itching and rash.!  I decided to research the heck out of the disease and a way to get rid of it.  I found may forums and read through all the threads and found some common denominators in folks who found relief so I decided to try them all.  Here is what I have done so far over the last two weeks to get COMPLETE relief in about a week:

I eat a cup of Cilanto a day in a Smoothie I make with just rainbow sherbet and water (BTW  I HATE Cilantro)
I take 5000 units of Vitamin A and 4500 units of Vitamin D daily
I put Honest Company zinc sunscreen all over my body after my shower
I have weaned my self off of the oral steroids down to just 15 mg a day (so far)  I plan to go all the way off and see if the natural remedies work alone.

Wish me LUCK!

Offline TomA

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Re: Grover's disease
« Reply #1963 on: Thursday January 17, 2019, 08:35:55 PM »
Best of luck with your recovery! I,too, have found success with the Prednisone when I took it for other issues. But when I went of it the Grover's returned. I didn't have the same success with either bit. A or D. Continue working with your dermatologist on treatments.

The good news is that the disease has a six to twelve month timespan for most

Keep us posted.

Tom A

Offline Waybad1

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Re: Grover's disease
« Reply #1964 on: Sunday January 20, 2019, 11:40:41 PM »
I'm a 58 year male that has had Grover's for about 10 months. It came on suddenly just on my upper back and was a relatively small itch. I didn't do anything for
a couple of months thinking it was just dry skin. When it appeared on my chest and the itching increased I went to my doctor. By that time it was intense and I thought
I might have scabies. My doctor didn't want to even get near me and prescribed Permethrin cream and of course that did not work. I insisted he give me more and he did
and also gave me Invermectin. After that didn't work he gave me oral prednisone. That actually worked after taking for a week. I saw the rash get lighter and was hopeful.
He gave me another oral prescription that did nothing. I finally went to a dermatologist who recognized it right away and said it was Grover's. She said I was lucky it wasn't
scabies and that made me feel good until I discovered what Grover's was and I was wishing it was actually scabies, it would have been gone months ago. I went back to my
doctor and he had never heard of Grover's (great) He gave me Betamethasone which calmed the itch, but smelled awful. It did work for the itch for about 2 weeks, but when
I stopped taking it the itch came back right away. I am currently using Triamcinolone which helps with the itch, but to me is not a long term solution. I only used it for 2 weeks
and decided just to wait it out. I feel like I am polluting my body. I have been taking hot showers for the last week until my skin is red, but it does numb it for hours. Hot showers
might just be as bad for my skin but the itch is insane. I take Xanex to just barely sleep. I am healthy besides the Grover's, no other skin issues ever. I just had major blood tests at
UCLA medical center with everything good except high calcium levels. My doctor believes this has something to do with it. I will be going in for parathyroid surgery soon. I hope this
helps, but am not holding my breath. If this works or it goes away on it's own I will report back. I hope I am one of the lucky one's where it goes away on it's own



Offline Greg M

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Re: Grover's disease
« Reply #1965 on: Thursday January 24, 2019, 03:13:14 PM »
Hi everyone,
It's been a while since I posted on this site even though I have read every post written.  Although this thread on Grover's can be overwhelming with information on meds/creams/lotions/pills that has worked or not worked, it is VERY helpful to lead each of us in the right direction. 

I first experienced Grover's about 3 years when I thought I had a heat rash.  After my dermatologist tried a few different steroid creams, she did a biopsy and diagnosed me with Grover's.  After 3-4 months it subsided.  I had another flair up after making a trip in March 2017 to Turks and Caicos.  It started on my middle/upper back.  Unfortunately, this bout did not resolve itself quickly.  I found this site and started trying all kinds of different stuff.  After a while the spots spread all the way down my back but left my front side alone.  I began reading more about mercury poisoning and Chemet but wanted to find something I could do on my own.  SO I began my journey of trying different things...all with the hopes of ridding myself of this dreaded skin disease. 

I began doing cilantro smoothies and Chlorella 1,500mg each morning.  I was also taking Vitamin D 10-15,000 iu, Vitamin A 10,000iu, and Omega 3 Fish Oil 2,000mg.  While doing this I would try the Triamcinolone steroid cream (more on that soon) and Cerave cream to stay hydrated.  The problem with the cream is when you exercise a lot (which I do daily) or just sweat due to summer weather, everything seems to redden up more.  SO...I then tried using Gold Bond (green bottle) powder when I would go exercise.  This helped some with itch and irritation.  This was an endless cycle for 6-8 months.  Things would get somewhat better, then one hot day or not staying on top of the powder, and it would be ground zero again.  Needless to say, mental anguish becomes very real as you all know.

We went on a family trip to Kiawah, SC the summer of 2018 and even though I was in the sun a lot and sweating a ton, everything seemed to be tolerable and somewhat lightening.  What was happening?  Was it just going into remission?  Well, after we came home to the Midwest, things went back to bad and started popping up on my chest now too.  So I tried to remember what I did in Kiawah that was different...THE OCEAN!!  I then discovered this article http://www.seagateworld.com/2012/07/seaweed-part-ii-grovers-skin-rash-by-richard-lentz/ (scroll down to comments to click on parts 3-5 of his blog)....SEAWEED POWDER.  Every time I finished swimming in the ocean, my skin didn't itch and the spots lightened.  So i ordered this in October 2018(http://seagateproducts.com/index.php?show_reviews_tab=1&show_reviews_tab=1&p=view_product&product_id=229&reviewspage=2#reviews#reviews) and began using it daily in the shower.  It would tingle after showering it off, but my skin felt soft and didn't itch at all.  The spots were very red at first, but after I cooled down from the shower, they lightened up. 
I also read on here where high dose Vitamin A 50,000iu x 3 daily for a couple of weeks helped them.  So I started on this path as well.  Also, since I had been using the Chlorella for quite a while, I began taking Flaxseed Oil with ALA 3,250 (2 pills) x 2 daily and Alpha Lipoic Acid (form of Chemet) 300mg x 2 daily on recommendations from people on this forum. 

I know, i know...this all sounds like a lot of stuff, and it was.  But this disease will make you crazy things to rid yourself of the uncomfortable/itchy/make your skin crawl feeling.  Finally, we have a real aloe plant and I was rubbing the insides of the leaf on my back and chest after each shower.  I felt this also was helping things.   After doing all these things since mid October, I feel like the Seaweed powder and the Flaxseed, ALA, Chlorella and Aloe combo was working to lighten and reduce the spots...but not completely.  So off of one more recommendation from here, I purchased the Miracle Aloe Cream off Amazon on Dec 13th, 2018(https://www.amazon.com/Moisturizing-Moisturizer-Hydrating-Sensitive-Psoriasis/dp/B00DYBS6FS/ref=sr_1_1_a_it?ie=UTF8&qid=1548345695&sr=8-1-spons&keywords=miracle+aloe+cream&psc=1).  I would rub this, along with some Calcipotriene (Vit D cream) and Sarna for cool relief, all over my back and chest after the shower/seaweed powder. 

Now who knows, it may all be coincidence and remission, but EVERY SINGLE SPOT on my back and chest are gone!!!  If I see/feel one pop up, I hit it with the seaweed powder in the shower and then make sure to lubricate well with the Miracle Aloe cream, and it's gone the next day.  I pray this is the end....but we all know it's possible to return at any moment. 

Everyone on here...keep your heads ups!  Try some of the recommendations from people on here.  Some may work for you...some may not.  Don't try for a few days and quit.  Give everything a minimum of two weeks to set in and start working.  If it doesn't work, move on.  Hopefully someday it will subside/resolve/go into remission. 

Thanks for reading my LONG rant!

Offline golfboy307

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Re: Grover's disease
« Reply #1966 on: Thursday February 21, 2019, 08:55:23 PM »
Its been awhile since I have posted but I would encourage some of the new folks to go back and read some of the old posts regarding mercury chelation and a dermatologist by the name of Paul Dantzig who practices in NY.  My Grover's, which I had for 3 years, was GREATLY helped by eliminating fish from my diet and getting my old silver/mercury fillings replaced (one was decaying my dentist told me).  I went from constant suffering down to a few spots every once in awhile on my chest.  Darn near cured.  Dr. Dantzig is convinced a great deal of the etiology of Grover's is influenced by mercury and sun damaged skin.  For those of you using Cilantro, that is a known chelating agent that helps remove mercury from your body.  Not sure you knew that, but that might be a clue for you to consider. 

If you have tried everything else like I did, it is worth looking into. 

Offline Maestrofred

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Re: Grover's disease
« Reply #1967 on: Sunday March 31, 2019, 12:32:11 AM »
Just a quick question for the group: has anyone tried using a CBD lotion or oil on their Grover's rash?  Just curious.  Thanks!

Offline golfboy307

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Re: Grover's disease
« Reply #1968 on: Wednesday May 01, 2019, 03:57:34 PM »
I have not tried CBD oil, but let us know if it helps

Offline Waybad1

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Re: Grover's disease
« Reply #1969 on: Saturday May 18, 2019, 09:48:51 PM »
I don't know how bad it is for you, but I received a Kenalog 40 injection on February 22nd for complete relief including
the rash disappearing 90% that lasted for 10+ days. It made me feel so alive and gave me at least a feeling of what was to
come as my very experienced doctor said would have Grover's for 3-5 years. I received that same injection May 9th and it has
so far lasted 10 days. I did it do to an upcoming move that i definitely wound not have been able to do due to the itching. I took
a comprehensive metabolic panel before the first injection and after it ($28.00 walk in service is all it cost) my readings elevated
slightly, but returned to normal a month later. I took another panel after this months injection and my liver readings again raised slightly
My doctor said nothing to worry about as far as the readings go. I plan on doing this every 3 months.