Grover's disease

[Elisa]

Hi Elizabeth,

I'm so happy to learn that the Flower Bach Rescue cream is working for you too.  I also have told my dermatologist and my pharmacien who initially were both sceptical. It really works.  I'm off to Tunisia this weekend and am taking several pots with me!

Take care,
Elisa

[TomA]

I also haven't been on in some time. If you look back to my March-April posts, I've had a pretty bad case of Grovers for four years. It got so bad I insisted my Derm try something besides Dovonex. I talked to her about Lamisil and Accutane, which I'd read about, but she wanted me to try Soriatane, saying she thought it was less harsh. It also has a lot of possible side effects, including birth defects if you women get pregnant within three years of taking it. I was only able to be on it for the month of April. It is quite expensive and my flex spending ran out early. I only had minor, but troublesome, side effects until the end. Right as I went off it I had a few days of severe depression, which is quite atypical for me. It cleared up within a day or two of ceasing the med.

The good news is that, although I was still having problems when I went off the med, I've continued to improve and am mostly Grover free after 2 1/2 months. I get a spot here and there, but Dovonex takes care of them. I have continued with 50M mg of Vit A daily, not sure if that is helping or not. I can only encourage you to try it for a month or two and see if you have the same benefits. Because of the expense and side effects you may want to talk to your Derm about stepping down the dosage after a month, or just try it for a month and see what happens.

Best of luck all. I'll keep in touch if anything changes.

TomA

[Elisa]

Hi TomA,

Have you tried not taking any medication and just treating your Grovers locally?

I have just spent a couple of weeks in the hot climate in Tunisia (no A/C).  I was dreading what might happen to my pretty much under control Grovers (no medication).

Upon arrival in 40°C my Grovers immediately flared up.  I got really scared but fortunately the Grovers didn't change place and surface on my body.  It remained on my chest in exactly the same place.  The spots got nasty and red and itchy, just like they were when I was first diagnosed.

The sea water certainly didn't help and made the itching even worse.  However, after a couple of days and the continuing use of my flower cream it started to improve.  The itching has now stopped and the spots are still bright red and ugly.  I guess I'm back to square one but at least I have a non toxic treatment that works until I do something stupid like go to a hot climate and swim in the sea!

Take care,
Elisa

[stuartpierce]

I haven't posted in a while, so I thought I'd post an update.
I haven't seen a dermatologist in years, so I thought I'd let a 3rd take a crack at me.
He started me with Lidex and 150,000 IU of vitamin A daily.  Neither had any noticeable effect.
Now he is having me try Hibiclens and Calcitriol.  I had a touch of acne breakouts which the Hibiclens knocked out quickly, but it didn't have any positive effect on the Grover's.  If anything, I think it irritated it a bit.
I mentioned the possibility of a mercury connection, but my dermatologist was pretty sceptical.  I guess I should have had a printed article with me.
I'm thinking of giving Xymogen's Chelex a shot.  It's stronger than the chelator I tried before.
Not sure where else to turn, though my doctor mentioned accutane as a last resort.
Aveeno Baby Soothing Relief Diaper Rash Cream is the best topical I've found so far.  It's not a cure for me by any means, but it seems to be soothing and protective.

Stuart

[jd1]

Stuart,

I'm sorry his treatments didn't help.  I was on high dose Vit A for a while - one of my first treatments.  It did nothing.

I don't think any of us here who have used Dr Dantzig's treatments got initial positive reactions from our docs.  We've all had to battle for the pills.  Several of our docs agreed to give it a try after contacting Dr Dantzig.  He is very helpful and responsive.  Maybe your doc would be more receptive if they spoke.  His email address is at the bottom of the research article.  The other thing is that some of us saw changes in our skin pretty quickly.  Lisa recently posted, and she was really happy after only about 6 weeks of treatment.  I - and my mom - saw a difference in my back after just one week.  I wasn't clear, and I did a lot more chelating before my skin remained consistently really good, but I knew right away that I was on the right track.  I hope that helps.

Good luck. 

[TomA]

Elisa,
Since I stopped my Soriatane treatment, I've not taken any medication except the Dovonex. It is prescription and fairly expensive but covered by insurance and is safe to use with no side effects. I misspoke on the Vit A, I'm taking 50,000 IU a day. The Soriatane is Vit A based and that may  be why it may now be having some effect. I'm not big on meds either, but the Grovers got so bad I had to try something. There were days I was crawling out of my skin, it would almost feel electric. Now it's basically gone.

For the heat some have had success with Gold Bond Medicated Powder, but other powders may work as well. It helps soak up the heat and sweat and sooth the burn a bit. I've considered having my doctor test me for mercury, but haven't yet. I don't think I would try chelation unless I had a high mercury level.

It's great your cream is doing the job. The frustrating thing, as the years go by, is the thought that you're a lifer and it's never going to go away. You start feeling like Job. That's also partly why, for me, it was worth trying the Soriatane.

Good luck,
TomA

[PHE]

Hello Elisa,  I want to relate over to you and all who have this disease called GROVERS.  I also have grovers and was diagnosed (biopsy) approx. one year ago.  I am a 63 year old white male and  I had the rash everywhere except my face.  My doctor gave me prednisone and fluocnonide ointment which gave me some relief.  But a doctor with the thinking there is no cure and unknown reason why.  I read from this site that doctors back east think grovers is related to heavy metals in your body.  And that got me thinking.  My history prior to my break out with grovers was--about 10 days prior, I was using a rodent smoke bomb (outside)without a mask (not recommended).  The question is, can GROVERS be related to toxins within our body and GROVERS is a reaction of.  I went with that question and put it into action.  I tried something I have not read by anyone on this forum--not once, of trying to rid themselves of this disease.  But it was worth a try.  Remember, my rash was very heavy, not just on my chest and back--EVERYWHERE.  And that was JUICE FASTING.  I knew if my theory that toxins was to the root of the problem--fasting would help.  And the results--after a 7 day fast, complete clearing except my butt which had the largest of the lesions.  I then tried a 12 day fast and complete clearing of all lesions on my body after 2-3 days after I stopped my fast.  You must keep in mind that someone will not see results during the fast, but after you have stopped the fast.  You can study fasting on JUICEFASTING.ORG web site.  Today, I continue my fight against GROVERS with more fasting and sweating out my toxins with a home dry sauna (FIR).  I wish you well.
PHE.

[Elisa]

Hi TomA and Hi Phe,

I was interested to read your messages, thank you.  It would appear that there are numerous origins for Grover's and also numerous responses and indeed remedies.  If you have both found things that work for you then that is all that matters.

I now know that my Grover's (which was diagnosed in January 2009) is definitely extreme temperature related.

I also know how to treat it since I recently had a horrible flare up (which I expected in 39°C) and it's already improving.

I am  beginning to live quite well with this ugly disease and it really doesn't bother me as much as it did when I first discovered it.  I guess it will never entirely go away but the Grover's I have to put up with on a day to day basis is really quite do-able.


Take care,
Elisa

[jd1]

PHE,

I'm glad you are feeling better.  If you look back several pages, you will find a long post by Anndrew where he lists the work he did to learn how to manage his disease.  He had blood tests that identified a toxin (some pesticide I think) and went through some pretty intense sauna therapy to lessen his toxic load.  I mention this to you in case his story is helpful to you in understanding your disease.  Your story is somewhat similar to his. 

[Sarri]

Hey! Just an update - I've been on 100,000 IU of Vitamin A for a month now, and I am noticing some improvement - spots are mostly white in color now (still have a few brown - red), and they are shrinking in size. Also, I was diagnosed with very love vitamin B12 levels, and since I've been taking 1000 mcg's a day, I've notice improvement in how fast my skin heals / rejuvinates itself. I am also taking a multivitamin daily. All of this combined has def helped. I am not "out of the woods" by any means, because I did something (not sure what) the other day, and my chest started breaking out, so I put on some steroid cream ASAP, which helped immediately. But, I am really trying not to use that anymore. Oh, and I use baby powder ALL the time, which helps me.

And, I wanted to mention that some people use Dovenex (sp) to help Grover's, but I've tried it twice, and within 2 weeks of each attempt, my Grover's was out of control, so it's not for EVERYONE - and it takes twice as long for the "damage" to heal. So, my advice, if you try it, and even think that you're getting "itchier" / worse - stop it.

[stuartpierce]

Well, I've taken 6 Xymogen Chelex capsules daily for the last 14 days, and now I'm taking a break.  If I see any improvement I'll post.


DMSA ..........................................................   150 mg
EDTA (Calcium EDTA) ..........................................   450 mg
Cilantro ......................................................   450 mg
Chlorella .....................................................   450 mg
Allicin (as garlic extract) ...................................   9000 mcg
NAC (N-Acetyl Cysteine) .......................................300 mg
Alpha Lipoic Acid .............................................   150 mg

[DixieDiva]

Another update from the too hot and humid South. I had a physical earlier this week. The nurse practitioner got a good look at my back, which despite everything I've tried, just refuses to get any better. A lot of the things I've tried (thanks to this board) have helped, but none of it would give it that extra nudge to start healing. The nurse said it looked very much like acne with plenty of irritation, inflammation, and signs of infection. She suggested a 10-day course of zithromycin and some antibiotic wipes on it. After 2 doses of the antibiotic I'm seeing some improvement. Even the stuff that 2 derms thought might be Grover's looks better. I still think there's an allergy to xanthan gum going on, but I'm doing my best to get that out of my life.

I never had a problem with acne growing up. Now that I'm staring at menopause, I feel like I'm going through puberty in reverse. Adult acne is the payback for the beautiful skin I used to have. At least acne is treatable.

[socalmom]

Hi all,

Just checking in from Southern California.  I continue to be Grover's free.  The only exception would be after an extremely hot, sweaty workout or if I leave a damp top on for an extended period of time.  Even then, I clear up within a day or so. 

When I compare where I am now, from a year ago...I'm amazed.  I thought I was going to crawl out of my skin. 

Hang in there everyone. I hope you are all doing well.

So Cal Mom

[Elisa]

Hi Elizabeth,

Really sorry to learn that your Grover's has got worse.  Let's hope that "So Cal Mom's" good news will apply to us all and that it is just a question of time.....

My Grover's had practically cleared up until several recent stints in the (indirect sun).  Sea water doesn't help.

I'm lucky in as much as mine hasn't spread (yet) and remains located in the middle of my chest.  Now I'm back in the city, in air conditioning and with my plant cream I remain hopeful!

Take care,
Elisa

[reedweb]

Hi everyone,

 I've had Grover's for about 10 months now. I'm a 53 year old male and it's the second worse case my dermatologist has ever seen. Only places not affected are face, hand, feet and groin. My daughter came down with a similar rash the month previous that my outbreak occurred but doctor (same one I have) says she doesn't have Grovers but she never had a biopsy done. He doesn't give us the time of day when we talk to him. I can't change doctors because he's the only one with PUVA but said he'd eat his shoe if she has it. She's having a biopsy later this month...we'll see (told her to bring salt and pepper for him just in case...lol)..

 When I first came down with this rash, I did some research on my own and thought I might have Pleva. I read some people with Pleva though it might be linked to immunization shots given to babies. Our granddaughter received her shots just days before my daughter's outbreak and I broke out days after seeing her...just a coincidence?

 I recently had a severe outbreak with this steamy heat we're having and I'm always looking to try something new. I'm a diabetic so I can't take steroids and try to limit steroid creams. I recently found that making jewelweed tea relieves the itching quite well. I keep a jug in the fridge and apply it with a cloth to affected areas. It's also nice that I have a big patch of it growing in my back yard. I'm going to try some of the vitamins suggested here as well.

 I'll keep you posted and thanks for all the posts here.

[Elisa]

Hi Sarri,

Thanks for your message. I think I sent you two replies but have lost them!  If you don't get them, let me know.  I was just saying that my Grover's is the same.  No improvement since I made it worse on holiday this summer in the sea water and extreme heat.

Take care,
Elisa

Hello Mr Reedweb,
Grover's is not contagious.  Therefore your unfriendly doctor is probably telling the truth!
Elisa

[reedweb]

Hi Elisa,

 Yes, I know Grover's isn't contagious...what I was wondering is if the same thing possibly triggered our reactions, like the Polio shot my granddaughter received. Both our reactions started the same, raised itchy patch about 1/2" wide and 1-1/2" long on thigh which spread to more patches and then the spots all over chest and back...only hers occurred a month earlier. This spread to arms and legs on both of us...mine to scalp and buttocks as well being much worse than hers. She's actually clearing up with just a few patches but I sweat a lot while working (run heavy equipment, stone mason, cutting trees, etc.) once it's above 70 degrees, she's not warm until it's in the nineties and never breaks a sweat. We'll find out soon enough...two days to her biopsy. I'll let you know the results.

Take care,

Reed

[Seattlejeff]

I've noticed members mentioning heat or sweating activating their Grover's.  I live in Seattle where the summers are normally in the 70's, but we have been in the 90's and even broke 104 degrees one day.  Most of us don't have air conditioning in our houses because the weather never gets that hot.  This summer has broke all records.  I ended up having to check into a hotel with air conditioning because I could feel my back flaring up.

What really irks me, is things seemed to clearing up, then boom, the Grover's came back.  My regimine is using Selenium Sulfide Solution, kind of a shampoo you lather on your back for five minutes and rinse off, twice a week.  And I have been on a three month regimine of Itraconazole or Sporonox.  Also in between Selenium treatments I use a tea tree oil soap on my back.  This seems to all help.

I guess my question is, when the heat activates the Grover's how long does it take to abate or begin receeding again?  Next place I live will have air. 

Any comments appreciated,

All my best,

Seattlejeff

[Elisa]

Hi Seattle Jeff,

Yes indeed sweating certainly envigorates Grovers.  We've all known that if you read the posts on this site.
I'm back to square one, re-treating my Grovers's as I did the first time round.  Patience!  It's not easy.

All the best,
Elisa

P.S.  Mr Reed, I'm waiting to hear the results of your daughter's biopsy.  I bet it's not Grovers.

[reedweb]

Hi Elisa,

Well my daughter went to the derm today and he decided she didn't need a biopsy because she only had a few small patches. Said he'd see her again in 4 months and go from there. I really hope she doesn't have it but she went through all the itching last winter and her rash behaved the same as mine so thought maybe there was something in common to know a little bit more about this stuff...she just cleared up quicker and didn't have another severe outbreak like I did. Me thinks the doc doesn't like the taste of shoe leather...lol. At least she's mostly scratch free now.

My Grovers became so bad this past week I got an infection on my ankle and my family doc put me on antibiotics and the 6 day steroid pack. He said the steroids would do less damage to my diabetes (elevating my blood sugars) than all the open sores and possibility for infection...in the past few days I actually cleared up over 50% and itching much less.

I guess I have nothing to report until 4 months and hopefully nothing then.

Be well,

Reed