A Grover's Gal from Down Under

[Alison1]

Hi everyone!

I have just joined this forum today and thought I'd better introduce myself.
I developed Grover's disease when I was about 25, and have had it ever since.  That was 26 years ago!  (I thought it was meant to be 'transient'?  )  I have been to a number of dermatologists and had a variety of treatments, some of which ease the symptoms... most of which don't.  I visited a new dermatologist several days ago after a particularly nasty flare up and he wants to put me on Prednisolone and give me UV light therapy.  I've had the UV therapy before, and wasn't impressed.  He tells me that the light has been refined over the years and is now more effective.  Must say I'm reluctant!  My condition is particularly painful, itchy and aggressive, so I'm feeling a bit desperate at the moment.  Has anyone tried the UV recently?

Thanks for reading this, and have a great weekend.

Cheers
Ali

[CazAngel]

Hi there, Ali. Welcome to SkinCell. I hope you find some helpful posts on here, and perhaps, some people with your condition that can share experiences and, etc, with you.  I myself know little about it, and do not have it. I do, however wish you a lot of luck with it.

[Alison1]

Hi Caz!

Thank you so much for your warm welcome!

I'm the only person I know with Grover's, so I'm looking forward to hearing about other people's experiences (not that Grover's is anything to look forward to  ) and any advice they would like to share.

Thank you again, and enjoy your day!  (It's night-time here in Australia, so about to go to bed.)

Cheers
Ali

[totalfolly]

Hiya, Ali, and welcome to SkinCell!

totalfolly

[Alison1]

Hi Totalfolly!

Thanks for welcoming me and saying hi!

Cheers
Ali

[Elisa]

Hi Ali,

Like you, I have Grover's disease.  Unlike you, mine is very recent and triggered by many hours of anaesthesia. It's pretty horrible to look at.  I'm do a lot of sport and it's unpleasant to be covered up to the neck when I feel like taking layers of clothing off.  At least I've found a solution for the itching.

I don't know quite what I was looking for in joining this forum.  Others like me I guess. And help. The only replies I have had have been from the forum's kind moderators who seem to ensure that everyone gets a warm welcome.

None of the specialists I have seen seem to know anything really constructive about Grover's Disease.
I am terrified that it's going to spread to my back as well as my front!

I certainly don't envy you having had this for 26 years.  I was rather hoping mine might disappear within a few more months....

Any advice welcome.

Best,
Elisa

[itchychick]

Welcome Ali (and Elisa!).

hope you can both find some useful and interesting advice here 

[Alison1]

Hi Elisa!

I'm sorry to hear that you have Grover's as well!  Not much fun, is it!  It seems to me from all my encounters with dermatologists, that there is no cure, but only treatments to relieve the severity and the itching.  The latest one has recommended Prednisolone steroid pills, Celestone steroid cream and UV light therapy.  I've done them all before, and there is not much improvement.   Certain things tend to trigger flare-ups for me.  Most interesting, was that the Grover's basically disappeared completely a year ago (after I went through menopause), but has kicked in BIG time since I started taking the Pill again recently for an IVF cycle.  This has happened to me before, so I have to say I'm convinced that there is a correlation between hormones and the onset of a flare-up.

Luckily it is winter here, so I'm covered up.  My chest in particular is just appalling, so I empathise with you and your clothing dilemma.  Apparently heat and sweat exacerbate the condition.  Do you work up a sweat when you're doing so much sport?  It probably wouldn't help!  My Grover's is on my back too, and also makes an occasional appearance on the upper part of my arms and thighs.

What are you using for the itching?  I bought Egoderm Ointment a few days ago and have had some encouraging results after one application.  For Grover's to persist so long (as it has in my case) is unusual.  I'm hoping that yours is just temporary and transient.

My latest dermatologist also suggested a treatment that involves massive doses of Vitamin A.  A side-effect is the very real possibility of birth defects.  Being on IVF, I'm not about to try it out!!!!

Good luck Elisa!  I doubt if I had anything helpful to offer you, but at least you know you're not alone!

Itchychick... thank you for popping in!  I'm hoping we'll find some advice here as well.

Cheers
Ali

[Elisa]

Hi Ali,
I am very grateful for your response.  It is comforting to know that someone else in the world has got the same awful skin problem.  I do however feel somewhat embarrassed in talking about my Grover’s Disease because I’ve only had it for six months compared to your 25 years.  You must have truly suffered with it…
I am almost certain that mine is anesthesia related.  Although I am in menopausal age range, I do
not have a hormone imbalance and I have no other illnesses, therefore my Grover’s must come from the operation I had at the end of last year.
I am feeling particularly like a freak because I live in a very aesthetically conscious capital city.  When I now to go the public swimming pool I feel that people are thinking “have you seen that woman’s skin, is she contagious?”.  And this is something that is hard to deal with, other people who don’t know what it is and are scared of catching a dreadful disease.  I would sometimes like to hold up a sign that says “I am not contagious”.  Even my boyfriend has made some unfortunate comments: after all, Grover’s Disease is definitely not sexy!
My regular dermatologist, who by the way is a very nice woman, was totally out of her competence area with this disease. She was very upset to not understand what I had and she forced me to biopsy the spots which confirmed Grover’s.  In her 25 years of practice I am her first Grover’s patient! I also saw “the dermatology top specialist” in a leading hospital. He was of no assistance whatsoever. He said that the usual toxic drugs prescribed for Grover’s had worse side effects that actually putting up with the disease…..
So I consulted a Naturopathic Doctor for the first time in my life.  He suggested using a cream made of flowers and plants and although this sounded a bit like witchcraft to me, I am very happy to say that it works.
The spots are still as horrible as ever but the itching has entirely stopped.  The cream has the strange name of “Rescue Cream” and is manufactured by a company called “Bach”.  I don’t know if it is only sold in France or not.
Thank you again for you support and do keep in touch!
Best,
Elisa

[Alison1]

Hi Elisa,

I totally understand feeling like a freak, and the 'contagious' issue.  Horrible, isn't it!  When people see my skin, you can see them cringe and retreat as though they'll catch it just by being near me!  I've also had dermatologists not believe that I have Grover's, and every time I see a new one, they take more skin samples for testing.  No wonder I've lost weight 

Very interesting that you think yours was brought on by anaesthesia.  I get the feeling that there are so few cases in women, that dermatologists simply don't  have the background information to be able to make informed opinions on causes and treatments.  I suggested my hormone theory to one, and he just had no idea.  (Having stopped the Pill three days ago, my skin has calmed down already.  More than a coincidence as far as I'm concerned!)

Yes, some of the drugs they recommend are very toxic.  The first treatment suggested to me (when I was in my 20s) actually rendered you infertile.  Nice side-effect! 
 
I also bought a cream recently called Rescue Balm for 'skin emergencies'.  It is a herbal cream, like your Bach product.  I occasionally see an acupuncturist, ad he tells me to stay away from beef, nuts and pineapple.  I've also tried Chinese herbs and naturopathy, but with little success.  I've given everything a go!

Oh, and red, scaly, itchy, lumpy spots are definitely not sexy!  On a positive note though, at least Grover's isn't on the face!

Take care!
Cheers
Ali

[Elisa]

Hi Ali,
It is so comforting to know you are there!  You are quite right in thinking positively: No Grover’s on the face…..can you imagine how even more awful that would be?
I had one unique case of Rosacea (which is only on the face) five years ago and TOUCH WOOD it has never come back.  It took three months to clear up, but it did clear up with small doses of Tetracycline. Nonetheless I pay great attention to the products I use, the food I eat, the light/sun exposure I get and all the other Rosacea risks.  So far, so good.
Another Grover’s sufferer wrote on this forum that he believed light/sun actually helped the disease. He said that his Grover’s was worse during the winter….If he is right, that could be another contributory factor in my case as I have not been in the sun for five years, since my outbreak of Rosacea. 
There is clearly a temperature related element in Grover's.  Extreme temperatures seem to cause outbreaks.
This is why I’m sure my anesthesia is related, not necessarily only due to the toxic drugs involved in anesthesia but the lowering of body temperature for many hours in an operating block could well be significant.
How do you react to the sun?  Does your Grover get worse?  Does it spread?  Does it improve? What happens?  How about sea water?  Does that affect Grover’s?
I’m sorry that the flower/plant cream doesn’t work for you.  It honestly takes all my itching away.
Have a good weekend,
Best,
Elisa
P.S.  Reading through the past Grover messages, someone called Jimbo suggested in 2004 a special Grover's board on this forum.  It doesn't seem to have been followed through or am I wrong?

[Alison1]

Hi Elisa

From what I've researched, most Grover's sufferers seem to be worse in winter!  I am!  I'm wondering whether it has anything to do with the fact that we tend to rug up, wear lots of clothes and woollen jumpers, and that 'suffocates' the skin to a degree.  During summer, I'm mostly in loose cotton T-shirts, so there is more air circulating around my skin, and perhaps this is helpful.  I used to love going to the beach and lying in the sun, but haven't done it since I got married 16 years ago (my husband is not a sun-worshipper), and my skin has become increasingly worse over that time.  I always felt the sun improved my condition, but most things I read recommend staying well away.  I haven't been near salt water for 16 years either, although we've just built a salt water swimming pool, so I'll be interested to see if that helps me.  Too cold to swim at the moment, so I'll to wait about six months to find out!  Mind you, I hope my skin clears up before then, or I won't be putting on that swimsuit. 

I haven't really had a good look around this forum yet, so not too familiar with other boards and posts.  I should probably check it out!!

Enjoy your weekend.  I guess it's nice and warm over there!

Cheers
Ali

[Elisa]

Hi Ali,

Your views on winter worseness and the sun are indeed interesting.  Like you, I used to spend a lot of time on the beach without any particular problem.  Even though I am fair skinned, I didn’t burn abnormally.  However, like you, I’ve not been in the sun for a considerable time and have a trip to North Africa planned this summer which I’m finally going ahead with even though Grover’s has sprung upon me.

I might make matters much worse and then again, I might not!

Let me know what happens with the salt water….I’ve got a feeling Grover’s isn’t going to like that too much.

Please do keep in touch.
Best,
Elisa

[Alison1]

Hi Elisa

I don't think Grover's is going to like my salt water pool either!

The trip to North Africa sounds amazing!  I reckon that some time in the sun is actually going to be therapeutic.  I hope you have a fabulous trip.  It all seems very exotic.  Sometimes I wish Australia wasn't so isolated and far away from everything.  I'd love to travel more, but it is just such an ordeal from here (time and money!).    I actually have family in the States (my aunt married an American Marine and had 8 kids), but I've never been over to visit them.  One day!

If I have any breakthroughs, I'll let you know.  One of the hardest things for me is to stop scratching and picking!!

Have a wonderful trip.  If you ever come to Aus. you will be most welcome to come and try the pool!   

Cheers
Ali

[Elisa]

Hi Ali,
Many thanks for this recent email exchange which has been of great interest and support to me.
Thanks to those who set up this forum.
I shall certainly keep in touch although I shan’t be trying out the sun until the end of June when
I leave for North Africa.
Meanwhile, my "witchcraft" flower cream continues to work splendidly – and the spots aren’t quite as red as they were!
Take care,
Elisa

[Wooley]

Welcome to the forum, Alison and Elisa,

Wooley

[Alison1]

Hi Wooley.

Thank you so much for your welcome!  So many lovely people on this site!

Elisa, I'm going to try your Bach remedy.  No harm in a bit of 'witchcraft'.  You wouldn't believe the weird and wonderful things I've tried over the years (mostly useless... but hey!).  I've had some success with my Rescue Balm, so figure that the Bach cream may be even better.  Very encouraging to hear that it's helping you.  That's brilliant!

Cheers
Ali

[Elisa]

Thanks for your welcome Wooley.  It's nice to meet you! I don't know what psoriasis (spelling?) involves but it doesn't sound great either....

Hi Ali,
I sincerely hope the Bach cream works for you too.  I bought some more today.  I use it several times a day and it just seems to sink in and totally stops any itching.  My spots are no longer red by the way, they’ve turned kind of pale brown and look more like scars or stains than spots.
Since we last communicated I’ve had a few exchanges on the main Grover’s board.  There are quite a few other women on it too.  I hadn’t understood that because their pseudos have no gender and I thought that Grover’s was mainly a male thing.  Well, apparently, it isn’t and there are lots more like us on this forum! It seems that we are all in a similar age range, all fair skinned....
Let me know about the cream.  It worked almost IMMEDIATELY for me, within two or three days I no longer itched and it’s taken like three months to make the spots change colour. I take no other medication, well, except the pill.
Take care,
Elisa

[Sarri]

  Hi! I am a skincell "virgin", I guess you could say - as this is my first post. I was recently diagnosed, via biopsy, with "acantholytic dyskeratosis" (Grover's); however, I am sure I've had this condition for approx. 10 years.

Let's just say turning 30 has NOT been easy for me. LOL! In Feb. of 2009, I had a sudden ruptured ear-drum, so my family doc put me on a "dos-pack" of steroids - made my neck break-out, so I went back to the doc - he said, "you must have an allergy to shampoo or something." So, he put me on topical Fluocinonide, and I went home and changed my shampoo, soap, lotion, detergent, etc... After 2 weeks, no change...so, I go back the doc.

My doc says, "let's try another pack of steroids" - much to my dismay, but I think, he's the doc, so why not??? Ugh! If I knew then, what I know now!!!! I believe the steroids caused me to sweat soooo much, that my Grover's became this uncontrollable beast!

I remember getting small rashes on my neck, chest, back and left leg when out in the sun during the summer months, but after the steroid "treatment" I recieved in Feb and March, these rashes came out in full-force, and now (almost 4 months later), I can't get them to go away. UGH!!!! Oh, and a "bonus rash" has appeard on my stomach, which is now the worst one I am dealing with!

In May, I finally got into a local dermatologist, and she said, "I think you have Grover's" just by looking at me - then, confirmed it with a biopsy. Unfortunately, she doesn't know much about the disease and gave me a week of Betamethasone Diproprionate and some lotion samples. The Betamethasone does help, but doesn't eradicate it, and I am affraid to say that the rash has gotten worse, since going off of the cream - you should only stay on these for a short while, I've heard.

As I am sure all of you have done - I've been looking on-line for something to help - does anybody have any thoughts on trying any of the following: Vitamin D3, tanning bed, dandruff shampoo, curel lotion, doxycycline??? Thanks!

[Uncle Matt]

Welcome to the Forum, Alison, Elisa and Sarri!

Nice to have you all here

Matt