Author Topic: Grover's disease  (Read 778795 times)

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Offline TomA

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Re: Grover's disease
« Reply #1900 on: Saturday March 04, 2017, 02:29:50 PM »
Yes, I use a hair dryer, which I learned from Bob A years ago, so welcome back Bob. I found the entire idea counterintuitive, but I was in such a bad place I was willing to try anything. And the dry heat actually works to stop the stinging almost immediately. If I do it without the Triamcinolone it doesn't work as well or as quickly. Since the Triamcinolone is a steroid I use very small amounts. A small tube lasts me 6-12 months. At the same time Bob suggested dry heat, another member, Geraldine, was using wet, hot rags on hers, but I just couldn't get into the mess to try it when the dry heat worked.

TomA

Offline BobA

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Re: Grover's disease
« Reply #1901 on: Sunday March 05, 2017, 12:47:08 AM »
All I can say for anyone is if you can find a cause and effect, your Grovers gets worse everytime a particular thing happens, then do the opposite. I put a bandaid over a blister to see what would happen, and I got a bandaid shaped area of more blisters. The initial blister didn't change. So why?

I also sat in the car after playing sport and drove home sweating. 1-2 days later had a seatbelt shaped area of blisters across my chest. Why?

I would lie in front of a fan heater in winter because it was warm and stopped the itching. 1-2 days later the Grovers half disappeared. Why?

The common theme was water held against the skin and every attack only occurs after some occasion where that happened. Doing the opposite (drying off totally) has amazing results. Dry heat doesn't also dry you, it seems to actually reduce Grovers regardless of water.

Mine was worse in winter, I put that down to wearing more layers of clothes. Despite being in Australia it does snow not that far from here. It's the end of summer right now but I wear thin, loose clothing and Grovers is less of a problem.

Anyway, I encourage everyone to notice what makes it worse, then do the opposite. Try my bandaid test for yourself. I believe last time I suggested it there was no one who tried it, which was disappointing. For me it changed my life.

Cheers.

Offline Elisa

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Re: Grover's disease
« Reply #1902 on: Sunday March 05, 2017, 05:39:44 AM »
Good Morning Bob A,

The next time I get an outbreak of Grovers (and I hope it won't be soon) I will try your bandaid test but for the time being my Grovers is under control with only a spot or two left to remind me that it is lingering...

It strikes me that most of us here have found our own specific way of managing Grovers and that what works for one doesn't necessarily work for another.

There are as many relief solutions as there are causes.....maybe there are different levels of Grovers?!

Remember too that diet seems to play a part in all this for some of you....I am a vegetarian (no animal/fish consumption)  and I have been all my life, so those who believe that suddenly becoming a vegetarian will help, could well be disappointed.

The psy factor is another one: extreme stress can also bring on Grovers.....etc etc.
The mercury factor.....it worked for some, not for me.

Whatever, I wish all of you who are still involved in these exchanges better luck in the future with your version of Grovers - I'm now off to the public swimming pool in Paris because water (unless the temperature is freezing cold or boiling hot) is not a problem for me!

All the best,
Elisa

Offline Jimbo

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Re: Grover's disease
« Reply #1903 on: Thursday March 09, 2017, 01:49:54 AM »
For what it's worth. Probably you are using some form of cream to control the itch from Grovers. I've tried several while trying to stay away from cortisone. The best one I've found, and there are probably better ones out there, is a cream called Dermamed All-purpose Balm. https://www.dermamed.com/products/all-purpose-balm?variant=1108169749
Just thought I'd pass that along.

Jimbo

Offline Anncfg

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Re: Grover's disease
« Reply #1904 on: Tuesday March 14, 2017, 09:50:21 PM »
Hello.  My name is Ann and I am 67.  I first had a bout with Grovers when I was 58.  I had a few more bouts of it in the following years but wasn't diagnosed until 2015.  I now have it off and on throughout the year.  Up until recently I was using Sarna lotion, which worked better than anything else I'd tried.  Then I read a post on here suggesting using a hair dryer on as high heat as possible.  That worked extremely well.  Recently I have been using lidocaine.  It works very well, better than anything I've tried.  I apply it the minute I feel an itch and it stops the itch.  I don't feel the urge to scratch. The last bout of Grovers I had never became full blown and I credit the lidocaine.  I buy it over-the-counter (Aspercreme, Icy Hot, etc.).

Offline TomA

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Re: Grover's disease
« Reply #1905 on: Wednesday March 15, 2017, 11:54:06 PM »
Ann, I too am 67, and am the one who suggested the hair dryer. I've been using it for a number of years for immediate relief. I'm glad the lidocaine works for you. I've had limited success with such. I have to use small amounts of the steroid Triamcinolone then the hair dryer for best relief. Keep us up to date on how you're coming and what works.
Tom A

Offline JohnSydney

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Re: Grover's disease
« Reply #1906 on: Saturday March 18, 2017, 05:32:19 AM »
I have a good news story. For many years Iíve been trying the remedies covered on this site without much success, until I tried a change in nutrition.  I celebrated March 2015 as the 2 year anniversary of the Grover symptoms going away.  I didnít make any comment until now, in case the symptoms were going to reappear. I was diagnosed with Grovers in September 2005.  Iím male, from Australia.  I was 54 years when my skin irritation appeared on my chest and back. It took a few years of visiting doctors until they identified I had Grover's disease. I tried lots of remedies but no improvement - I just had to live with it.  It was luck that I came across a nutritional program that changed my Grovers symptoms.  In early 2015 I was searching for a way to improve my general health and lose some weight. A good friend in the medical field told me about a nutritional program that had scientific backing supporting weight loss. I gradually lost weight, plus felt much better generally.  The bonus was within 2 months I noticed the skin redness and irritation starting to diminish, and symptoms gone within 6 months.  I have no sign of skin redness or itching since then. Iíve also lost 9kg so far and have increased energy levels.  Although this nutritional program does not make any claims about improving skin conditions it has been a welcome side effect for me. I donít want to advertise any brands on this Board, so if you want more information email me at john.flynn89+grover@gmail.com and Iíll send the details. I see itís distributed in USA, Canada, Australia, NZ, Hong Kong, Taiwan, Singapore, Malaysia, Indonesia, Mexico, Columbia and UK later this year.  If you want to buy it, shipment is direct from the manufacturer, over the net.  They donít make any claims about skin health.  Itís come with a nice side-effect for me. John

Offline Greg M

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Re: Grover's disease
« Reply #1907 on: Thursday March 23, 2017, 05:36:21 PM »
Hello all-
It is nice to hear that everyone on this forum seems to have the same issues/symptoms as me.  I was diagnosed with Grover's back in the fall of 2016 after dealing with it since the Spring of 2016.  I am in my early 40's and mine was all over my lower back.  I too tried everything under the sun to cure my "heat rash" as was my continued diagnosis.  Finally my derm Dr took a biopsy and discovered what was going on. 

It does seem like there are numerous ways for people to treat their flare ups and also, numerous reasons for it to come back.  Mine finally subsided in Jan 2017 after using Charcoal soap in the shower and CeraVe moisturizing cream recommended by dermatologists for sensitive skin.  I also run/workout a lot and started applying either Gold Bond or Zeasorb powder on my back before working out.  Between all these continued efforts, it went away.  We just returned from a vacation to Turks and Caicos and it has returned...this time on my middle/upper back.   Excessive sun and heat/sweat appears to be the culprit.  I hope my past efforts will put this down quicker than my first bout.  I am also trying a cream called Terrasil Daily Care Cream.  It is for Eczema/Psoriasis and other skin disorders and it has apparently helped other people with Grover's here in the US. 

Good luck to everyone dealing with this irritating disease and keep posting your remedies out here!  Hopefully, someday, we can find the cure!


Offline Maestrofred

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Re: Grover's disease
« Reply #1908 on: Wednesday March 29, 2017, 02:54:09 AM »
It's been a while since I've posted on here.  After reading about some people using a hair dryer I decided to try it and it did nothing for me.  What I have found to work for me is to take a really hot shower before bed.  It helps stop the itching and allows me to sleep at night without scratching all night.  I guess that this is similar to using a hair dryer but I have more success from the heat from the hot water.  You just have to be sure to dry yourself off well.

Offline TomA

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Re: Grover's disease
« Reply #1909 on: Wednesday March 29, 2017, 03:07:48 PM »
Maestrofred, I also enjoy hot showers in the winter time. I've found two things concerning the hair dryer. First, it works best when preceded by putting Triamcinolone on the spots first, and secondly, you have to get your skin as hot as you can stand. I use high heat and high speed. It usually only takes 20 second or so per spot. Sometimes the first blast isn't enough and I have to go over it a second time. I also find that blasting one area will trigger another, new spot to start itching, so I move from spot to spot getting each as hot as I can stand until the itching stops.  Being able to go to bed without itching has been wonderful for me.
TomA

Offline ckg1989

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Re: Grover's disease
« Reply #1910 on: Wednesday March 29, 2017, 07:58:30 PM »
Hi All- I was diagnosed with Grover's Disease by a Derma doc through a biopsy this past December. October through January was a nightmare as I had a severe case; on my back, chest, both arms, tummy, and thighs. Right now it's just all over both elbows and one side of my chest. I have never itched so badly in my whole life. I am seeing a derma doc who is great; she gave me a spray that takes away the itch for at least 8 hours. Of course, my case was so severe that I was on steroid injections/pills, hydroxyzine and then doxepin for several months. All of those things cause significant weight gain, bc I am a 45 year old female I have taken myself off of them. I would like to find a specialist in AZ bc there has to be more than all of these pills. Does anyone have a referral? Thank you in advance!

Offline Maestrofred

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Re: Grover's disease
« Reply #1911 on: Friday March 31, 2017, 08:22:47 PM »
Thanks, TomA.  I guess that I will have to try your technique.  I did go and see an allergist in January because I was afraid that I had developed some new allergies because I have been breaking out in other areas on my body that I have never had a problem with before - like my arms and in my crotch and down the inside of my thighs.  The only that showed up as a new allergy was to gold.  And I don't wear any gold.  I do, however, have a few gold caps in my mouth but the allergist said that they would not cause a problem.  Now I am wondering if there is a connection.

Offline TomA

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Re: Grover's disease
« Reply #1912 on: Friday March 31, 2017, 11:01:14 PM »
Some have mentioned here that they've had their metal crowns removed. I had one fills one that wore out. Having it removed didn't make any noticeable difference. On the hair dryer, I have found that some aren't strong or hot enough. On my current one I use high heat and speed and use a concentrator nozzle on the end.

Offline TomA

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Re: Grover's disease
« Reply #1913 on: Friday March 31, 2017, 11:02:18 PM »
That was supposed to say one gold filling removed.

Offline Tock7

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Re: Grover's disease
« Reply #1914 on: Tuesday April 04, 2017, 09:22:27 PM »
I'm new here and have struggled with Grover's for over 10 years and diagnosed a couple of years ago.  I have just recently discovered that flu shots and immunizations flare my Grover's Immensely.  I was so clear until at my physical I was talked into a tetanus shot which I didn't really need.  My Doctor prescribes Fluconazole when I'm really flared, but naturally I try and use anything naturally to calm it. 

Offline Journeyman

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Re: Grover's disease
« Reply #1915 on: Wednesday April 12, 2017, 03:09:56 AM »
Hi All, I'm back, cos the itch is.  Eight months clear (the hottest eight months in our part of the world), and suddenly 24 hours ago I get itchy.  Not severe this time (touch wood), and back and shoulders rather than chest. I know it's the old G from the sensations.  A particular, persistent kind of itch, and very strong sensations followed by relief from a VERY hot shower.

TomA, I checked the band-aid thing and it doesn't cause me a problem.  Nor does seawater, which somebody else finds to be a trigger.  No seatbelt pattern.  No visible correlation with physical vs. sedentary work.  My diet, lifestyle, etc.: no change recently.

As several of us have said, it seems to be different for all of us, both triggers and treatments.

Last time I had it, it stayed with me from a cool temperate region in winter, to the tropics, and back again.  Lasted about four months, most severe at the beginning.  I haven't got a ghost of a clue so far what my trigger/s is/are.  I'll get back to the Vitamin D supplementation, because I just suspect that may have helped, and I do think that coconut oil was very soothing and perhaps alleviated symptoms a bit over time.  Short-term, a fiercely hot shower reliably gives me a few hours' relief, and nothing else does.  For me, the whole thing seems to come and go at random.  Part of the last eight months, I was eating less grains and more animal protein, because my partner was trying Paleo for migraines (Paleo didn't fix them, but we did confirm her sensitivity to wheat and dairy, which we had already suspected).  For me, part-Paleo/non-Paleo made no difference, and I know my body appreciates a hunk of wholemeal home-made bread and local cheese from time to time.  [Dear Paleo missionaries: I'm glad it works for you.  It didn't for me.  Thanks for sharing.]

I just have to come back to the conclusion that Grovers is a very individual thing.

Offline Maestrofred

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Re: Grover's disease
« Reply #1916 on: Friday May 05, 2017, 04:15:26 PM »
I just saw an ad on Facebook that looks promising for helping during the summer months.  The link below is for a new technology that helps lower your body temperature when you wear a shirt that cools as you sweat.  I'm just curious as to whether anyone on here has tried one of these yet.  The reviews look promising and it may help us from breaking out in a rash on a hot summer day.  I'm thinking that it might be just the thing to wear when I'm outside cutting grass on a warm summer day.

www.ArcticCool.com/Shop

Offline tk-itching

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Re: Grover's disease
« Reply #1917 on: Tuesday May 23, 2017, 08:26:25 PM »
I am new to this page.  I was diagnosed with Grover's Disease 4 years ago from biopsy results, my first flare up was 9 years ago.  I am a 44 yr old female, so my GD started around 35.  My normal areas of outbreak are my upper stomach (under my bra), chest, and breast.  When I have a bad flare up, I will break out with the rash on my arms, legs, and back.  My flare ups normally occur in the summer months, but have occurred once in the winter and a few times in the spring.  I live in the deep south so it is HOT!! There is NO way to avoid sweating or heat!!  I also enjoy being in the sun.  I am not a crazy sun person - I don't over tan, but I like being in the sun.  I have been taking Minocycline for daily for 2 years.  Eight weeks ago I ran out of my meds for 2 weeks, and bam the Grover's rared it's ugly head.  I have been back on the meds for 6 weeks now, and although the flare up is much better it is STILL not completely gone. 

Has anyone been prescribed Accutane?  If so did it help? I go to my derm tomorrow and I fear he will want to give me Accutane.
« Last Edit: Tuesday May 23, 2017, 08:28:30 PM by tk-itching »

Offline TomA

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Re: Grover's disease
« Reply #1918 on: Tuesday May 23, 2017, 09:05:07 PM »
t-shirt, thanks for joining us. I want to speak first of all to the Accutane. It, and other such treatments were discussed on here 8-9 years ago. I talked to my Derm and she put me on Soriatane, a similar retinoid. I had to go off it after only a month due to severe side effects. Six months after going off it I started getting blood in my stools and was finally diagnosed with ulcerative colitis. I went on a treatment plan for the UC, but the medication made things worse, not once, but twice. I went off treatment and over time it cleared up with my no longer having any signs of it. Coincidence? I think not. I discovered shortly afterwards that there were class action lawsuits against Accutane for causing such things as UC.  So, please be careful before starting anything like this. Is Minocyclinea Grovers treatment? I've not heard of it. What are its side effects?

I live in southern Virginia and can have outbreaks year around. I've not yet discovered the triggers.

TomA

Offline tk-itching

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Re: Grover's disease
« Reply #1919 on: Wednesday May 24, 2017, 07:18:37 PM »
Tom,
Minocycline is a form of tetracyline, an antibiotic commonly used to treat acne.  I have been taking it daily for about 2 years.  I started taking it as needed a year earlier.  It did help, but seems my body is not responding to it any longer. 

My current GD flare up is not my most severe, but it is the longest single period that I have had a rash and itching.  I am going to the dermatologist today, and plan to discuss all options.

Tish