Author Topic: Grover's disease  (Read 455234 times)

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Offline Sandy

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Re:Grover's disease
« Reply #80 on: Monday April 05, 2004, 10:41:12 PM »
Thanks anyway

Offline BobC

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Re:Grover's disease
« Reply #81 on: Tuesday April 06, 2004, 12:51:54 AM »
Sandy,

Welcome from another with Grovers, I am not sure if the Doctor is alive, there is a lot of info on this site and the links, but it would appear that grovers affects us all differently and individualy and being so rare and no real ongoing research means that your derms can only do what they can with the limited info available.

I have done a lot of searching for extra info but hit a brick wall, the members on this site seem to have more personal experinces than any other source that I can locate.

My medical support here in Australia has been absolutley brilliant across the board, but none of them have much in the way of extra info.

Regards

Bobc
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Offline Sandy

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Re:Grover's disease
« Reply #82 on: Tuesday April 06, 2004, 04:13:08 PM »
Hi Bob

Thanks for the FYI. This is just so unbelievable! They want me to take a 19 day dose of Preginose. But I'm afraid of the side effects. If you get any updates I would love to hear! Thanks again!

Sandy

Offline Jimbo

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Re:Grover's disease
« Reply #83 on: Wednesday April 07, 2004, 02:56:04 AM »
Hi Sandy,
Welcome. I've had Grovers for 16 years now. From my experience the medical community doesn't know anything more about the disease than they did 16 years ago. There is no known cure. However, it is transient in most cases. Keep your fingers crossed. You may be one of the lucky ones. In the meantime I suggest you don't expose to sunlight the area of your body with Grovers.

Jimbo

Offline Sandy

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Re:Grover's disease
« Reply #84 on: Wednesday April 07, 2004, 04:26:21 PM »
Thanks for the info, but I have decided to just live my life as normal and deal with the rash as it comes. I love the sun and riding my motorcycle! I refuse to surrender to a rash! I have found that the UVB from the tanning beds make the rash flat and not so itchy. My derm said that he had heard that UVB does work sometimes. So thats where I'm at.

Thanks again!

Sandy

Offline stuartpierce

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Re:Grover's disease
« Reply #85 on: Thursday April 08, 2004, 06:46:44 AM »
Question for anyone.  Is moisturizer beneficial at all for this condition?

Stuart

Offline mic

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Re:Grover's disease
« Reply #86 on: Thursday April 08, 2004, 02:50:22 PM »
Stuart,  I keep a bottle of Noxema in the refrigerator and aply it with a long white ribber kitchen spatula to the places on my back that can itch or ache so badly that I could scream.   The Noxema is BLESSED relief.  I also use the Aveeno Skin moisturizer and body wash - the stress formula.  These can help at times.

Right now I also am aware that a couple gin and tonics before supper in the evening provide several hours of relief.  Obviously that could become a very serious problem in terms of concerns about alcoholism..  My dilemna is whether the judicious use of alcohol is better or less dangerous than use the very strong drugs with side effects that can be harmful to the body.

One other discovery,...shortly after the Grovers blossomed I realized that the foam "waffle pad" on top of my mattress was actually holding in body heat at night and aggravating my discomfort.

Mic

Offline BobC

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Re:Grover's disease
« Reply #87 on: Sunday April 11, 2004, 01:23:27 PM »
Stuart,

I have tried a number of moisturiser but have not found one that helps, the calamine lotion presciption that I use has a cooling effect because of the menthol and phenol added.

Mic,

My internal lotion is Guinness in moderation of course, it helps me sleep and breaks the itch cycle, I have not tried it externally though, may be I should.

Regards,

Bob C
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Offline BobC

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Re:Grover's disease
« Reply #88 on: Sunday April 11, 2004, 01:30:08 PM »
Sandy,

I have been on Predisolone for about six months, it seems to help with keeping my Grovers under some sought of control with limited side effects, we are all different though.

Regards,

Bob C
BobC

Offline jd1

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Re:Grover's disease
« Reply #89 on: Wednesday April 14, 2004, 02:08:14 PM »
Hi everyone,

Has anyone tried the suggestions posted by Kit on page 2?  I know her, and her disease has been so bad, and now she knows how to make it go away.  As I posted before, I followed her lead and tried Solaraze on mine.  The rash still bugs me, I am obsessed, but after I dosed it, it was so much better than it used to be.  The lesions are small.  To give you an idea of the size, usually they are too small to biopsy.  I definitely still have this stupid thing - can make it flare w/ hot tub, long hot showers, too much wine or chocolate, a load of stress, pms, the normal stuff, but as I said, it is not nearly as bad as it used to be.

The connection, of course, is sun damage.  If many of agree that it is sun damage related, why wouldn't we try sun damage treatments?  I have not tried Efudex or Carac, but Kit has had wonderful success with Efudex.

One derm insisted that I had to try all her pills before the topicals.  Another completely dismissed the sun damage connection.  A third, wonderful derm was very interested, but he declared that it really wasn't bad enough to treat and that I was so much better than before (he had seen me both pre and post Solaraze slather).  So when I want to experiment with other topicals, I get them from my internist.

If anyone decides to try it, please post back and let us know.

Offline kenbkb

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Re:Grover's disease
« Reply #90 on: Wednesday April 14, 2004, 05:28:49 PM »
Hello all,

50 year old male here. I have had Grover's for 4 1/2 years. Diagnosed a couple of years ago visually by a derm, and then confirmed only last month through a biopsy. Have other stuff going on, painful skin around the collarbones and deltoid muscles. Actually wear lycra t shirts hand made for me to ease the pain. Most spots are on the chest and back, occasionally the legs and arms. It's your basic nightmare as you all know. Aggravated in the sun for sure, by exercise, and questionably by foods as well (chocolate?, coffee? spicy foods? tomatos?). I either itch or hurt, one of the two. Found a drug from my neurologist that has really helped with the pain, it's called triliptal (sp?). I'd used the steroid creams for years, they help to a degree.

After 4 1/2 years, my derm and I FINALLY decided to get aggressive, and I am on day number 7 of 40mg accutane daily. No change in the Grover's thus far (actually worse), but I should say I stopped my antihistamines as well, so I will go back on them now. I had two variable changes (stopping the antihistamines and adding the accutane) so that was dumb of me. Anyway, I will let all know if the accutane works at all.

I am certainly interested in what Kit had to say. Has anyone else pursued this remedy? This seems to be the best success story on here, am I correct in that???

Peace to all.

kenbkb

Offline jd1

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Re:Grover's disease
« Reply #91 on: Wednesday April 14, 2004, 05:48:07 PM »
Hi Kenbkb, I think I am the only other one who has pursued Kit's remedy, and my experience is posted right above your post.  Have tried many many things and posted again to try to call everyone's attn to her information.

Offline kenbkb

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Re:Grover's disease
« Reply #92 on: Wednesday April 14, 2004, 07:42:44 PM »
jd1, so you are stopping short of the efudex and are satisfied with the Solaraze??

How long have you had Grover's and have you done the cortisone cream accutane route? (Or were you the one fearful of accutane and other meds of this sort?)

Offline jd1

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Re:Grover's disease
« Reply #93 on: Wednesday April 14, 2004, 08:37:17 PM »
I have had Grover's for 8 - 9 years, am scared of Accutane, don't seem to get results w/ the steroid creams (wouldn't want to use them long-term anyway).  

Am not satisfied, have I mentioned that I am obsessed?  Seriously though, I like everything just so, and these little spots don't fit into my plan, you know what I mean?  My husband thinks I am nuts and reminds me how much worse it used to be.  My friends say it is hardly noticeable.  Then again, the last couple of months I've been under tough work stress, and my skin's been bad, not as bad as before, but bad enough to itch constantly and hurt sometimes.  That bugs me - not knowing when it's going to act up again.  A nurse who has treated other Grover's patients with CO2 laser told me that compared to the other 50 or so people that she's treated, my lesions are much smaller, "I have to hunt for them" but there are many more of them.  By the way, CO2 didn't work for me.

The topicals for AKs and skin cancers cause the skin to flare - I think it is the way that they treat the AKs - everything gets really inflammed and then when it heals, you hope the skin is clear.  What I did with Solaraze first was treat my whole trunk as though it was AKs - so twice a day for 20 days I applied it.  The skin started getting a cottage cheese type look to it.  I stopped - was currently going to a derm who wanted to try pills instead - and when my skin went back to normal, the rash was actually gone for a short time. Came back, but as I mentioned, it was different and better.

I've played w/ some other stuff since then, and recently just took Kit's advice to try the Solaraze 3 x per week mixed w/ lotion.  She knows another Grover's person whose derm suggested that treatment.  This month my skin has been ok, and I'm still under tremendous work pressure (which will end soon).  Too much Solaraze causes its own rash, I am using this as a topical anti-inflammatory, which by the way is how diclofenac is generally used and what my pharmacist originally suggested almost a year ago.

Kit had amazing results w/ Solaraze, but she also had some scary side effects.  The Efudex works great for her - she puts on a tiny amout elsewhere, and it seems to work systemically to clear her.  So far, the Solaraze has been pretty benign for me as far as I can tell.  Actually see doc on Mon, I wonder what he'll think of what I've been doing?

But I don't want to make the picture too rosy - if I were satisfied, I probably wouldn't be cruising this website, right?

I am curious to try these drugs, Solaraze, Efudex, Carac, Aldara - not sure which - they are all AK or skin cancer treatments - but try them in the way that they were intended for the AKs or skin cancer.  For example, the Solaraze treatment for AKs is 2 x per day for 2 - 3 months.  Aldara is 3 x per week for some # of weeks, not sure how many.  Would that kill the Grover's cells?  One derm said that was ridiculous.  Another very well regarded derm was quite interested in the idea.  He actually wrote letters to a couple of companies to see if there was safety information about using the drugs over such a large area.  But he watched my skin for a couple of months and declared that it wasn't that bad.

We're just going into summer, and I don't want to deal with the inflammation, so I am postponing further experiments until Oct.  Until then I will continue w/ Solaraze 3 x per week and Retin-A 2 out of 3 nights (my skin can't take it every night).  But in Oct I will try something, maybe even spot treating with a couple different ones to see if any work.  Not sure.  

Your thoughts?

Offline kenbkb

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Re:Grover's disease
« Reply #94 on: Wednesday April 14, 2004, 11:40:11 PM »
jd,


I read your response. Thank you for that. I hear you on the obsession, too. I think some people have the ability to let things go, and others won't quit until they have the same skin they had as a baby. Well, maybe not to that extreme. Either way, whatever works for you.

I was confused by several items in your response. I saw you are afraid of ACCUTANE and STEROID CREMES did not work. Let me say that I am on day number 7 or 8 of 40mg ACCUTANE. Side effects so far are a dry nose and I just noticed today my lips are beginning to chap. I think I'l start skipping a day or two here and there to give my skin a chance to absorb this heavy duty medication. By the way, my derm did tell me that for acne, ACCUTANE is just about 100% effective.

I understand, too, about the spots not fitting into your plan. Mine either. But let's share our knowledge to help each other keep our plans intact. I did read somewhere, jd, that it doesn't depend at all on the SIZE OF THE GROVER'S SPOTS, the smaller ones, although less obvious, can itch as bad or worse than the more noticeable.

You lost me on "AK's"?? You mention it in the same sentence as SKIN CANCERS so this must be a general term for a skin problem or lesion? It seems from your one paragraph that the Solareze worked with the twice a day for 20 days, albeit with the "cottage-cheese" look. Maybe once a day might have been far better? Regardless, you did state you improved. You mentioned your doc wanted to go to pills instead. Was that a SOLARAZE pill?

Diclofenac, eh? That's another new one for me.

What were Kit's scary side effects on SOLAREZE??

I appreciate your sharing all that. I am going to do some searching in the next couple of days on the SOLARAZE, EFUDEX, CARAC and ALDARA. I'll let you know what I discover. I'll get a friend who has a knack for digging things out to help.

Last question I have for you. So the SOLAREZE causes actual inflammation (I saw your comment about not wanting to deal with inflammation during the summer)?

Here is a link for you, I am sorry I have little else to offer. All I can report on...for now, is the success or failure of the ACCUTANE. Anywho, here are some doctors in an online forum discussing Grover's treatments in an online forum...

Regards,
kenbkb

http://dermatology.cdlib.org/rxderm-archives/grovers

Offline BobC

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Re:Grover's disease
« Reply #95 on: Thursday April 15, 2004, 03:34:07 AM »
kenbkb, jd1,

I have been watching your discussions and am a bit confused by some of the term but I get the drift of what you have been talking about, I am currently in the middle of another significant Grover's outbreak, chest, shoulders, upper and lower back, thighs and forarms.

Can you tell me more about solareze, efudex carac, aldara, are they a prescribed items or available over the counter from a pharmacy, I will be seeing my derm late next week and I would like to discuss other options with him.

The Predislone tablets seem to assist me, along with the lotion that I have previously mentioned, but it keeps re-occurring far to regularly.

My compounding condition, urticaria vasculitis may limit my experimentation with other products but I would like to discuss it with my derm, doctor and the professor who are looking after me.

I will keep an eye on your posts,

Regards,

Bob C
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Offline jd1

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Re:Grover's disease
« Reply #96 on: Thursday April 15, 2004, 02:51:07 PM »
Hi all,

I am aware that the size of the Grover's spots doesn't affect the discomfort.  But if you had a choice of having huge lesions or small spots, which would you prefer?  I can wear t shirts that I haven't worn for a couple of years.

My first derm wanted me to try Tetracycline, then Sporonox, then Accutane before messing with the topicals.  She was talking about for life.  Big time not ok with me.  

Diclofenac is the drug name for Solaraze.  It is in pill form, but I can't remember the name right now.   I don't want to dose my whole body inside to treat a skin problem outside.  Also, it can be tough on the stomach, same as aspirin etc.

All of the topicals that I know of that treat AKs and skin cancer cause inflammation.  My understanding is that that is how the condition is cleared - it reacts with the drug.  See if you can find some pics of Efudex, I think that is the one that hurts worst of all.  But apparently the clearing after is really amazing.

Re the Solaraze, 3 x per week is about as much as I can use it without it causing its own rash.  So there I am using it as a topical anti-inflammatory.  But again, I don't think anyone has tried inflamming the lesions with these drugs to see if the drugs will clear them.  I don't want to candy coat it - there are safety issues with using so much.  AKs are abnormal skin cells that can turn cancerous - I'm blanking out on the real name.  In any case, they are small, as are skin cancers.  Here, I am talking about treating large areas.  That's also why at this time I am most interested in Solaraze, it seems less serious of a drug that Efudex, which as I understand it is a topical form of a drug that they use for chemo.  

Aldara recently received FDA approval for one type of skin cancer.  It works by calling immune system action to the diseased cells so that the immune system finally destroys the diseased cells.  I actually tried that one once, my doc forgot to tell me to use the tiniest amount, and I looked like I had chicken pox the next day.  Hurt like heck, took a couple of weeks to heal.  Anyway, a couple of people have told me that there is an autoimmune component to Grover's, and I don't understand that part of the disease, and so I am nervous about messing with a drug that messes with the immune system.  

All of these drugs are prescription, and Bob, I'll bet your derm thinks I'm nuts.  But I think that all of these are easier on the body than a lifetime regime of powerful pills.  The thing is, I've done a lot of reading and tried a lot of stuff, and this is what has worked best of all, by far.  It seems clear to me that my disease is sun trauma related, and I don't understand why the docs don't look to sun damage treatments for remedy.

Offline kenbkb

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Re:Grover's disease
« Reply #97 on: Thursday April 15, 2004, 05:54:04 PM »
jd,

interesting that a topical drug spread on a small area can heal a larger area. am i reading this correctly from you??? my assumption as a layperson would have been that only an internal drug could have that efficacy.

i have not heard of sporanox, appreciate the feedback. you are a major source of information re: grover's meds.

one question i might have is that on your 3x a week on solaraze, is there a point where, optimally or hopefully, it is supposed to be efficacious and you can cut back or ease off on the topical drug? of course this would be what we would want but do you get that read from using this that this is what is supposed to occur?

it seems as if also there is a general comfort or discomfort level with individuals as to whether they want to use the topicals or internal meds. i can report so far on my 8th day of 40mg of accutane a slight improvement. i am still getting some spots but some of the older ones are fading. way too early to forecast but i will continue to give updates. i am a bit encouraged. i am getting slightly chapped lips and my face is somewhat drier at this point so i am skipping a day here but will pick it up on day 10 for my 9th accutane.

Offline jd1

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Re:Grover's disease
« Reply #98 on: Thursday April 15, 2004, 06:25:03 PM »
Ken, have good friend who is also using Accutane.  I hope it works for you.  Sporonox was idea of first derm, another friend's derm said that was insane, and my internist was not happy w/ the idea - I guess it's tough on the liver.  If I remember correctly, the idea there is that there is a fungus infection element to the rash?  Not sure if I'm remembering that correctly.

I don't think at 3 x per week Solaraze will ever make Grover's go away - I think it is part of controlling the flare.  There isn't any idea of what's supposed to occur - this is an off label use of Solaraze.  That is why I am curious to try the AK treatments - test a small area, cause the reaction, see if then the Grover's will go away.  Not hopeful, but wouldn't want to miss a "cure" if it were there.  I don't get the systemic benefit from these drugs, Kit does.  Hopefully she will weigh in with her experience and information.  Glad you find the information interesting, I've been talking and researching and brainstorming w/ Kit and w/ Mepen and our docs for over a year now and again, this is the best we've found so far.  And there's been improvement.

Offline Jimbo

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Re:Grover's disease
« Reply #99 on: Thursday April 15, 2004, 11:17:35 PM »
Hi All,
I tried Accutane a few years ago. Took it for 3 months. Dealt with side effects like dry skin and flushed face during the whole time. It didn't help at all, but I've read on the internet of other derms having some success treating Grovers with it. There's a new drug on the market here in Canada called Protopic. It's actually meant for eczema, but my derm wants me to try it. Not holding my breath, I've tried eczema drugs before and they've actually made my skin worse. I'll let you all know how this goes.

Jimbo