Author Topic: 31 year old female with Grover's Disease  (Read 1758 times)

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Offline Hailey

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31 year old female with Grover's Disease
« on: Thursday June 22, 2017, 04:29:28 PM »
Hi, everyone. New to the forum. I'm a 31 year old female who was just diagnosed with Grover's Disease via skin biopsy. It's been persistent for four months, and seemingly came out of no where. I keep a very clean diet- no sugar for 8 months, and no gluten for 9 years. I eat organic, free-range, grass-fed, and what have you. I have no mercury fillings.  I believe the onset of my skin rash was largely due to a) moving inland after living no further than 4 miles from the ocean my entire life, and b) due to stress and pain from an old spinal injury that has recently caused pudendal neuralgia, as well as major repeatative crisis in the family for the last year. I am also a full time college student and step mother to a special needs child, so the stress is quite massive as of late. I've never had any other skin issues beyond being fair and not having tolerance for harsh chemicals/perfumes. I only use dove soap and have been known to make my own detergent. I am very allergic to poison oak and mango sap, but a recent panel shows no food allergies.  I do the ketogenic diet to control inflammation in the body, fibromyalgia, and Epstein Barr issues... which leads me to think Grover's may have an immune component.  But can excess ketones (acetone) expelled through sweat cause or exacerbate Grover's? Is there such a thing as a false positive Grover's biopsy? My derm  basically said to buy a spray bottle with a fan and hope for the best. I practice a lifestyle of self-care, meditation, spiritual seeking, etc. I get as regular exercise as possible, considering the heat and sweat. I feel like I'm already doing all the things suggested to alleviate Grover's Disease, and my age and gender make this Dx seem wrong to me. I am currently using triamcinalone in as small of doses as possible, combined with Sarna and ice packs, but today will be in the hundreds!  My derm also said to do bleach baths twice per week, so today I thought I'd go to the city pool to stay cool, instead. Thoughts, tips, and advice, please!!!

Offline MHERNANDEZ

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Re: 31 year old female with Grover's Disease
« Reply #1 on: Saturday July 01, 2017, 04:44:09 PM »
HELLO HAILEY I AM NEW TO THIS BOARD AND WAS RECENTLY DIAGNOSED WITH GROVER'S ON JUNE 20, 2017.  I HAD TWO BIOPISES DONE (SCALP AND RIGHT SCAPULA) STILL WAITING ON ANOTHER THEST TO BE DONE ON JULY 19TH.  ANY PROGRESS WITH YOUR CONDITION? I LIVE IN CALIFONIA, THE HEAT IS UNBEARABLE AND I'M DESPERATE FOR ANSWERS AND MOST OF ALL , RELIEF.  I'VE BEEN BATTLING THIS ISSUE ALONG WITH ANXIETY DISORDERS  SINCE FEBRUARY OF THIS YEAR.  ANY FEEDBACK OF RECOMMENDATIONS WILL BE GREATLY APPRECIATED.  THANKS IN ADVANCE - MARIA

Offline golfboy307

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Re: 31 year old female with Grover's Disease
« Reply #2 on: Monday July 03, 2017, 03:28:15 PM »
Hailey and Maria,

There is a Grover's Board on this website that goes back over 12 years with stories, tips, partial cures.  Hope you guys found your way over there.  Unfortunately, there seems to be many causes to this disease, and not enough remedies.  What works great for one person may not work at all for someone else.  I have found some relief eliminating mercury from my body, but not complete.  Mine flares in the hot weather, and is exacerbated by pool water and ocean water (double bummer).  You can also look up similar diseases like Darier's, which is rare, but is what I call the genetic version of Grovers'.  Sun damage seems to be a common factor for many people with Grovers.

Best of luck to the both of you.

Offline MHERNANDEZ

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Re: 31 year old female with Grover's Disease
« Reply #3 on: Monday July 03, 2017, 10:32:32 PM »
Thank you , I have been reading endlessly in hopes that I can read of success stories, as this is the first time I hear of this condition.  I hope to have a full diagnosis by the end of July, I'm just desperate for answers and relief.

Offline Hailey

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Re: 31 year old female with Grover's Disease
« Reply #4 on: Thursday July 06, 2017, 04:22:48 AM »
Hey folks. Thanks for the tip on how to navigate the site. I will look into that.

Maria, I'm so sorry, it sounds like you're really going thru it. My Grover's isn't gone yet, but it's getting better and much more tolerable.  Mine started with terrible anxiety, too. My body was in dire duress from a chronic inflammatory condition, and mentally/spiritually/emotionally, I was losing it. I took this as a sign to really invest in self-care, even harder.  I'm noticing that different things work for different people, so I started trying different things out. Number 1: I started making Dr. Axe's cilantro ginger detox drink with Greek yogurt. You can google that and give it a try. 2: I tried the swimming pool- it didn't help or hurt, so I figure it's ok for me. 3: I also live in California, and as it's gotten warmer, I started laying out in the sun. If I skip more than three days, it flares up really bad. I time myself in the sun... no more than 45-60 minutes so far. 4: I found a wonderful chiropractor who has a very holistic approach. She worked on my liver (very connected to the skin) for an hour, and I've noticed a steady decline in flare ups. She is helping tremendously with my physical pain issues, so my stress level has lowered. Lastly, I began gentle exfoliation every other day, and switched from lotion to unrefined coconut oil that I add peppermint essential oil to. I oilinate my skin when I'm getting out of the shower, but still wet. I still use very minimal amounts of triamcinalone on itchy spots. About once a day, I use clindomycine topical antiobiotics, as well. And finally, I use Saran lotion multiple times per day, depending on how much I itch. I'm able to get exercise, I just have to cool my skin down after that or sunbathing. So far, so good. Also, ice packs are great for night time relief.
   I recommend keeping a journal of everything from foods you eat to how you treat your skin, what activities you do, how you feel emotionally, physically, etc. Put it all in there and then rate your itchiness from a 1-10. The patterns will emerge. Skin is our first line of defense when the body is sick. Something is happening to cause it, and everything is connected. I truly hope you find what works for you. May we all heal completely<3

Offline Hailey

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Re: 31 year old female with Grover's Disease
« Reply #5 on: Thursday July 06, 2017, 04:41:14 AM »
Almost forgot: I basically changed my entire wardrobe. Good thing thin, Cotten, loose, and flowy t-shirts are in. I bought four new bras after researching materials to keep cool/avoid sweating. Worners and Hanes have been the best so far, without breaking the bank. They're poly spandex blends.

Good luck!

Offline MHERNANDEZ

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Re: 31 year old female with Grover's Disease
« Reply #6 on: Sunday July 09, 2017, 10:32:59 PM »
Hello Hailey, sorry I just now logged in and saw your reply.  I don't know how to do the "introduce myself" portion of this forum.  I have attempted several times but nonetheless I am relieved I can at least connect with someone in California : ) I reside in a small town Porterville- in between Bakersfield and Fresno.  So I'm sorry to hear you too are going through this yet relieved that I can connect with someone with recent updates rather than the 5 year old posts on this forum lol. I have had very little relief as far as the itching an flare ups.  My derm prescribed Clobetasone topical ointment and it seemed to dry the lesions a little, except I ran out and on limited resources to purchase a refill as the med is $526 !! My insurance ( medi- cal ) will not pay for the refill till the 17th of this month so I'm really struggling with the itch/burn sensation.  I have a second appt on the 19th, the derm is waiting a special container that's on back order from lab so she can run a immunoflourescent test on me, as I've already had two biopsies and pathologist request this additional test before he can confirm the Grover's and begin treatment.  As far as the anxiety I am on Xanax and it helps with the anxiety attacks and helps me get some sleep, I've tried teas, reading, watching tv (really late) but nothing seems to work.  I'd like to be able to get off the meds as soon as my treatment for the Grover's begins, I am praying that the anxiety is part of the symptoms of this awful disease and the treatment will start to kick in and get off the xanax. Thanks for the tips you gave me, I will definitely try those.  Hope to hear from you soon and that your condition improves.
« Last Edit: Thursday July 13, 2017, 04:58:24 PM by M@t »

Offline Iain

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Re: 31 year old female with Grover's Disease
« Reply #7 on: Saturday July 15, 2017, 03:41:01 PM »
I was diagnosed with Grovers in 2016 via biopsy after visual misdiagnoses by dermatologists including an unnecessary treatment for scabies.
 I am 67 and generally in good health, however in 2016 I also suffered a diverticulosis of the lower bowel which occurred after Grovers had started months earlier.

Grovers disease is a very frustrating and distressing condition.
Since 2016 I have experimented with different ways to alleviate it.

The only one so far which I find always works for me is to bath and put a copious amount of head and shoulders shampoo on to a back scrubber belt, and gently scrub the itching skin pustules with that. After rinsing, the pustules sting briefly and stop itching. After towel drying the pustules gradually begin to dry up and subside and heal over a couple of days. Where skin eruption into a pustule has not yet occurred it will not be affected until it's accessible to the active ingredient of the head and shoulders shampoo.

Nothing else has been reliable so far, but I am still hopeful and looking.
I hope this will help someone else too.

Regards

Offline MHERNANDEZ

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Re: 31 year old female with Grover's Disease
« Reply #8 on: Saturday July 15, 2017, 04:50:56 PM »
HELLO SIR, SORRY TO HEAR YOU TOO ARE SUFFERING FROM THIS RARE SKIN DISEASE.  I HAD A SECOND ROUND OF BIOPSIES DONE 3 DAYS AGO AND I'M ANXIOUSLY WAITING TO HEAR WHAT THE RESULTS ARE. ORIGINALLY THE FIRST BIOPSY SHOWED IT COULD BE GROVER'S , DARIER'S OR PHEMPIS VULGARIS.  MY DERM SAYS THE 3 CONDITIONS MIMICK EACH OTHER SO THIS SECOND BIOPSY WILL CONFIRM WHICH ONE OF THE THREE IT IS.  I HAVE LESIONS ON MY SCALP, BACK, AND CHEST AREA.  SOME HAVE APPEARED SUDDENLY BEHIND MY EARS, ARMS, AND  LEGS SO IT'S VERY FRUSTRATING AS THE HEAT OR SWEAT ONLY MAKE THEM WORSE.  SO YOU HAVE NOT BEEN PUT ON ANY KIND OF TREATMENT YET ? OR HAVE YOU JUST OPTED FOR A NATURAL APPROACH TO THIS.  I'VE READ UP ON THE SYMPTOMS AND CAUSES AND I DON'T SEEM TO FALL UNDER ANY OF THE CATEGORIES AS TO WHY I WOULD HAVE THIS?  HOPE YOU GET SOME RELIEF SOON. KEEP US POSTED.

MARIA

Offline golfboy307

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Re: 31 year old female with Grover's Disease
« Reply #9 on: Saturday July 22, 2017, 03:49:02 PM »
Hi Maria and Haley,

Let us know how your biopsy comes back.  To hear you have them in places other than your chest and back would suggest something else other than Grover's. 

Haley, interesting you mention the sun.  Whenever I try to sunbathe with my Grover's it makes it a lot worse!  Everybody's a bit different with this disease.  Mine gets a ton better in colder weather (I am in the Midwest).  Mine flares with sun, pool water, and ocean water.  Booo!!!  I am not surprised that you have had some relief with detox methods.  There is a whole school of thought that Grover's is caused by mercury and other toxins.  Mine got a lot better when I quit eating fish and had my fillings changed.  Better, but not gone.

Offline MHERNANDEZ

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Re: 31 year old female with Grover's Disease
« Reply #10 on: Tuesday July 25, 2017, 03:02:16 PM »
UPDATE: MY RESULTS FROM BIOPSIES CAME BACK AS : PEMPHIGUS VULGARIS(AUTOIMMUNE DISEASE) AND WILL BE STARTING TREATMENT TODAY WITH PREDNISONE 6 PILLS X5 DAYS, 5 PILLS X5 DAYS , AND 4PILLS FOR 4DAYS.  I WILL KEEP YOU POSTED ON HOW THIS GOES FOR ME.

Offline djdmjd

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Re: 31 year old female with Grover's Disease
« Reply #11 on: Thursday August 03, 2017, 05:54:41 PM »
How do you find on this site the "Grover's Board"?
I see people talking about going there.
DD

Offline Hailey

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Re: 31 year old female with Grover's Disease
« Reply #12 on: Saturday August 05, 2017, 12:40:18 AM »
Hey, everyone. I just saw a new derm and he thinks Grover's is a totally bogus idea. He said a lot can happen with the biopsy to get a false Grover's. He thinks I have sterile folliculitis, largely caused by stress and inflammatory response. Although I was glad to hear it's not something "incurable", I was disappointed to once again be unsure of what I'm dealing with. This is my 5th opinion, and each derm has said something different.  No cultures were taken, no tests done, and no real treatment.  He basically said to take a nondrowsy antihistamine... giving me no light at the end of the tunnel.  I am bummed, but I also can't complain much, because I do feel like it's better than it was when it started.  I'm grateful for the opportunity to know my body a little better, but the journey continues.  For everyone that has posted, thank you. I'm so sorry for the suffering of skin conditions like these. I'll be sure to post again if I find anything else out, but as I run out of derms in this rural area, I'm beginning to accept that this might just be one of those mysterious things that come, and hopefully go, leaving many unanswered questions.

Offline golfboy307

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Re: 31 year old female with Grover's Disease
« Reply #13 on: Monday August 07, 2017, 04:32:01 PM »
Interesting both Hailey and Maria received non Grover's tests results.  I had two biopsies done on different areas and they confirm that my cells are experiencing "acolytic dermatitis", which means the cells are not "sticking" together properly.  My derm says that narrows it down to Darrier's and Grover's.  Mine is likely Grover's because I have none of the other Darrier's symptoms, which usually start early in life due to its genetic nature. 

Unfortunately, the skin is a big puzzle.  I just got back from a wonderful week in Mexico, but the saltwater and heat shredded my Grovers'.  It will take awhile for this to calm down.

Offline Hailey

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Re: 31 year old female with Grover's Disease
« Reply #14 on: Monday August 07, 2017, 07:18:26 PM »
My only test was a biopsy that indicated Grover's (same as you, the skin cells were disentegrating). One derm is convinced the biopsy is correct, another thinks it's a false biopsy and that I have sterile folliculitis. I don't know what to believe, and it makes treatment difficult.


So glad to hear that life (and vacation) goes on!

Offline M@t

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Re: 31 year old female with Grover's Disease
« Reply #15 on: Wednesday August 09, 2017, 03:00:55 PM »
How do you find on this site the "Grover's Board"?
I see people talking about going there.

If you click on the "Home" button then click on the skin complaints and skin disorders, there's a thread highlighted at the top of the list called "Grover's"
The early bird gets the worm, but the second mouse gets the cheese in the trap
Eagles may soar, but weasels don't get sucked into jet engines
The Doppler Effect - Why bad ideas seem good when they are coming towards you at high speed. Don't rush things!!!

Offline golfboy307

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Re: 31 year old female with Grover's Disease
« Reply #16 on: Wednesday August 23, 2017, 09:20:04 PM »
Hailey,

The folliculitis can be treated with an antibiotic regimen correct?  If that does the trick you would know that it is not Grover's.  Sometimes it is best to eliminate the differential diagnoses if you can. 


Offline Hailey

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Re: 31 year old female with Grover's Disease
« Reply #17 on: Monday September 18, 2017, 07:56:02 PM »
M@t,
We did a round of antibiotics, both topical and oral. The new doc thinks it's sterile folliculitis, so no treatment would really have an effect. I'm now doing light box therapy- third week of twelve. It seems better as the weather has cooled. Will let you all know any updates.