Grover's disease

[BobC]

Diane,

The lotion that I have been using for about nine months is prescibed by my Dermotologist, it is a  base mixture of calamine lotion with menthol and phenol added to form the lotion.

I am not sure of the quanities as the chemist makes it up for me when I get the script from the Derm. Sorry I cannot be more specific, it really has been the main thing that has worked for me, combined with the Pintarsel and the Predisole tablets I am sought of under control but suffer significant and regular outbreaks.

Regards,

Bob C

[noomie]

 
Sadly I've had Grovers Disease for about a month.  This insidious rash has just followed a traumatic three months in which I had a heart bypass and two surgeries for cancer.  I think it may have damaged my autoimmune system.  Whatever it is, it sure is no fun.  I have these eruptions all over my body, save for my face and inguanal area.
I have tried prednisone, a host of salves, neurontin, hydroxineHCL, all without success.
I have tried holistic treatment and acupuncture equally unsuccessfully.
The sores either burn or itch,  
My dermatologist is head of Dermatology at Columbia and appears stumped.  He's in Germany right noiw but as soon as he gets back, I'll be on his doorstep.

[BobC]

Noomie,

Welcome, as a fellow Grover's Disease person I do actully know what you are going through, I hope you gain some releif it is no fun at all.

Bob C

[Jimbo]

This message is actually for Maggie,
Maggie you claimed to have had good results with chickweed ointment. I ordered some from Australia and have been using it for about a week now without any improvement. Did you find that it helped you right away or did it take a while? Did you find any difference between the ointment and the gel?

Jimbo

[mic]

Hey everyone,

Happy to find this sight, but might only add confusion.  I am a single 54 year old Caucasian male diagnosed after 2 biopsies in January with Grovers.  Started in late Oct. with itching on my belly and burning rash on my back.  I am also under a psychiatrist's care for a form of post traumatic stress disorder.  (Psychological/Emotional connection?)  Lived in the sunny south for 27 years and returned to a condo in the cloudy cool midwest two years ago.  

Currently I am getting UV light booth treatments 3 times a week and using the prescribed drugs, Hydroxyzine (50mg - 1 every 5 hours) and Lorazapam (1mg - 2 at night with the hydroxizine).  My dermatologist recommeded Sarna lotion (non-steroid) and BEST OF ALL refrigerated Noxema (I use a white plastic spatula to get to my back).  Also I have found relief with Aveno Propducts for stress relief - moisturizer and body wash.  I have had the outbreaks everywhere on my body below the neck so far including the soles of my feet and genitals.  Sorry for TMI, but somewhere there is an answer to this disease.  I am curious as to any psychological / stress connections with Grovers.  I am a total type A personality and have since the Grovers become very impatient and intollerant at times.  The worst times of the day seem to be the hour before falling asleep at night and the hour after waking in the morning.  Perhaps the changing body/skin temps between waking and sleep are a factor?  I found this web site today and was also told this morning there is no "cure" for Grovers.  Very discouraging.     Mic

[BobC]

Mic,

A big welcome to the site, I am in Melbourne Australia.

I also have Grovers Disease, mine was diagnosed in May 2003 via biopsies, with further biopsies in September and November 2003.

Interesting about your other treatment, I have been employed in the emergency services as a manager for 28 years, all of my medical support people (they have been absolutey brilliant) have been down the stress / depression path with me (due to the nature of my work and my profile) but I seem OK and they have not been able to establish a link to Grovers.

I have also picked up a couple of other bugs, urticaria vasculitis, (the itch from this compounds the grovers) helicabactor pylorii and my doctor thinks that I may now have entered a chronic fatigue syndrome type era.

I have mentioned my treatment above, I am also receiving UV light booth treatment twice per week I find this helps, my outbreaks have also not stayed to the routine pattern the worst area have been my chest and back, but my butt, legs, arms, neck and particularly my scalp have all been affected in some way.

I bath in the sea a couple of times a week, it stings like crazy but it also seems to help a bit.

I can relate to the timing that you mention my pattern is very similar, getting to sleep is a problems when the skin feels so itchy and actually feels like its creeping or crauling all over.

I have only been on this site for a couple of months and have found it to be excellent, nowing that there are a few of us with grovers out there helps a bit.

Regards,

Bob C

[Gobe]

 

Welcome to Skincell Mic!


 

[asterisk]

  hi

my name is asterisk and i am a newcomer to this chatroom/

i was diagnosed twice by biopsy for grover's about 2 months ago/

i am prepared to live with this affliction for as long as i have to but am interested in learning about the length of time it lasts/

does the time the disease remains active vary from individual to individual?/

thanks// asterisk

[Val]

Noomie, Mic & Asterisk,

Welcome to our SkinCell cyber family to you all.

Sorry to hear you all have Grovers Disease

I don't know if you've all seen this information but it might be of help to you.

http://www.dermnetnz.org/dna.grovers/grovers.html
 
Hope to see you all joining in with us all around our forum, here is a place where even though we don't all have the same condition, we all understand the problems of having a skin that plays us up.


Val

[BobC]

Hi Asterisk,

Welcome to our Grovers world, you are correct it seems to effect individuals differently, lots of good information and links on this site, hang in there, I am sure your medico's will find something that works for you.

Regards,

Bob C

[peterb]

 :hi:Noomie, Mic & Asterisk

A warm welcome to the forum.  Good to have you with us, hope you enjoy your stay.

 

[asterisk]

thanks bobc and peterb for the welcome/
this site is very comforting and being in the company of others with the same affliction gives strength/
one point that is not clear to me is which signs to be aware of when grover's starts to heal/ do the blotches and other manifestations vanish slowly, over a period of weeks and months or does this take just a few days?/

this is the first time i have had this problem and have not been through a full cycle yet/

thanks for your help//

[Gobe]

 

Welcome to Skincell Asterisk!

 

[BobC]

Asterisk,

Not be a medico I can only provide my thoughts, it will depend upon the individual as to how it will heal or go into remission or disappear all together. (I hope it goes away completely in your case).

With myself it slowly started to disappear from different areas of my body, it has never totally gone though, some areas still had the rash which in my case has re-emerged on several occasions.

Your Dermo is the one for the best advice, just by monitoring this site it appears that everyone is a bit different with treatments and duration.

Hang in there and keep asking questions, we may not have the answers but at least others can share their experences with you.

Regards,

Bob C

[mepen]

I am a 47-year old woman. I've had Grover's at least 6 years, maybe 8 now. I don't know, it's been so long, I've lost count. I've tried steroid creams, Dovonex, topical retinoids, and now I've been on a low dose 10 mg Accutane for about 6 months. No cure in any of them. However, when I discontinue the Accutane for 3 days in a row, I tend to flare, so evidently the Accutane is doing a little something to keep down the Grover's. I have found that milk and dairy products and premenstrual hormones tend to make me flare. I'm sick of it. I wish someone would find a cure! I see a derm at BU (Boston) and last visit she said this is something I may have to put up with for life! How terribly discouraging. Does anyone have any hopeful news? The only thing good I can say is that I made a new friend because of Grover's. Two years ago, JD1 and I became email friends due to this disease!

[Gobe]

 

Welcome to Skincell Mepen!

 

[BobC]

Mepen,

A big welcome from another with Grover's, like yourself I am looking for the good news.

Bob C

[mic]

Thanks for the welcome everyone!

Appreciate the opportunity to share about this disease and look for whatever common grounds there might be.  Has anyone experienced a flare up after eating or drinking anything?  I have no problem with caffine or alcohol (usual suspects) but I have had some very difficult evenings after consuming decaffinated coffee.  (Maybe the chemical to remove caffine reacts with my meds or the way I experience Grovers).

Other drugs I have used - daily asperine for 10 years.  I had a very difficult time getting on and off of Prozac.  Any connections?

Since Grovers I have had a significant decrease of libido.  Disease or meds could cause that.   The three times a week UV light treatments do seem to suppress the rash.  I also seem to be quite tired, lack of energy.  Again not sure if it is the disease or meds.  (Hydroxizine and Lorazapam.)  Just thought I would throw all this into the mix.
Mic

[Val]

Mepen,

Welcome to our SkinCell cyber family.

I don't have Grovers so can't answer your questions, sorry.

I do have a form of psoriasis though and know that like everyone else with it, it's for life. When you first hear those words it really does knock you world from under you.  But take heart Mepen, it doesn't necessarily mean that things will always be this bad. There are people who find it just goes away at some point, I hope you will be one of them.

I'm not sure if you've seen this info or not, but it may help.

http://www.dermnetnz.org/dna.grovers/grovers.html

Hope to see you joining in with us and posting all around our forum.


Val

[BobC]

Mic,

Again I can relate to many of the issues you have raised, libido, constantly tired, fatigued and no energy seem to be a part of grovers.

My medico's told me to stay away from asprin type pain releif, paracetomol is ok for me but I used to take asprin for headaches etc, for a number of years and they suggested I give it a miss !

Food and or drink is another area that I have to be very carefull, red wine seems to due something, although I cannot pin it down exactly, Guinnes on the other hand has no side affects on he and I love it !

I am currently eating very bland foods, nothing hot or spicy, no seasonings etc, some of my outbreaks seem to have been agrivated by some food groups or drinks, but it is very hard to isolate them and link them back to grovers.

I have been on a very strick food and drink monitor for three months to try to establish a link to grovers and the vasculitis problem that I have, but there does not appear to be one.

Regards,

Bob C