Grover's disease

[newgrovers56]

Merry Christmas everyone!  I just got back from a week long vacation in Hawaii  .   I found the humidity and gentle warm temperatures (it never got over about 78) to be quite soothing and helpful to my skin.  I did not expose myself to the sun very much and pretty much stayed in the shade during the mid-day.  Several of my spots virtually disappeared in that climate and my skin felt much happier.  Now that I am back in the cold and dry air my grovers is popping up and itching again.  I wonder if anyone who lives in Hawaii has gotten Grovers?

I lived in Hawaii for eight years and had minimal skin problems except a staph infection.  Grover's and other skin problems began after I returned to the Northwest, especially this year.  I have not been back to Hawaii since I moved, but I'm thinking maybe I should move back based on your experience.  The best derm I've ever been to in my life works in Honolulu too.  That would be worth moving back for in itself.

I'm glad you enjoyed the islands, and paradise helped your Grover's.  Maybe if I move back it will do the same for me.

By the way, I'm sure you probably took a dip or two in the ocean.  If so did that give you any relief.  Generally Hawaiian waters can be very healing.

A big aloha,

Jeff

Hi Jeff,
I loved being in the ocean, however I couldn't really tell much difference on my skin after a good soak.   It seems like the overall climate and humidity was the big help for my skin (and maybe the fact I was relaxing and enjoying myself).  I ate lots of fresh fish everyday so I don't think mercury has any effect.  I am trying to figure out how to get back there so I can see if my skin improves again although I am still overall doing much better than when I had my first major outbreak.  

FYI to everyone out there following this thread.  I went to visit my 78 year old Dad last week.  His back is completely covered in Grovers (he has been in the hospital), but it does not itch nearly as much as mine do.  Still hoping somebody will do a study on my family someday because we have 4 close members with the disease...

[BobA]

Hi TomA,

Yep, no cure but prevention / treatment. I really use the heat heavily once a day after my shower, plus the sorbolene + anti perspirant all over. The sorbolene has 10% plant glycerine in it which I understand to be like an oil or fat, and it does seem to help prevent water, sweat esp', starting anything off. For example it has been 110 F here this week and I work next to furnaces that are over 1500 F. I've been dripping with sweat for 4 hours / day, standing in front of a pedestal fan when I could. I've had only one GD start, just above my hip. Without doing any of the above I would expect to have dozens, perhaps hundreds. Most people wouldn't even think I had GD. I met my wife after my diagnosis and even she has never suspected and I've never had reason to tell her since I'm dealing with it quite well.

Of course I would love a job where I can stay cool but I always seem to end up in jobs where I'm standing in heat in the middle of summer, lol.

[Seattlejeff]

Merry Christmas everyone!  I just got back from a week long vacation in Hawaii  .   I found the humidity and gentle warm temperatures (it never got over about 78) to be quite soothing and helpful to my skin.  I did not expose myself to the sun very much and pretty much stayed in the shade during the mid-day.  Several of my spots virtually disappeared in that climate and my skin felt much happier.  Now that I am back in the cold and dry air my grovers is popping up and itching again.  I wonder if anyone who lives in Hawaii has gotten Grovers?

I lived in Hawaii for eight years and had minimal skin problems except a staph infection.  Grover's and other skin problems began after I returned to the Northwest, especially this year.  I have not been back to Hawaii since I moved, but I'm thinking maybe I should move back based on your experience.  The best derm I've ever been to in my life works in Honolulu too.  That would be worth moving back for in itself.

I'm glad you enjoyed the islands, and paradise helped your Grover's.  Maybe if I move back it will do the same for me.

By the way, I'm sure you probably took a dip or two in the ocean.  If so did that give you any relief.  Generally Hawaiian waters can be very healing.

A big aloha,

Jeff

Hi Jeff,
I loved being in the ocean, however I couldn't really tell much difference on my skin after a good soak.   It seems like the overall climate and humidity was the big help for my skin (and maybe the fact I was relaxing and enjoying myself).  I ate lots of fresh fish everyday so I don't think mercury has any effect.  I am trying to figure out how to get back there so I can see if my skin improves again although I am still overall doing much better than when I had my first major outbreak.  

FYI to everyone out there following this thread.  I went to visit my 78 year old Dad last week.  His back is completely covered in Grovers (he has been in the hospital), but it does not itch nearly as much as mine do.  Still hoping somebody will do a study on my family someday because we have 4 close members with the disease...

NewGrovers56

Thanks for the tip about Hawaii.  Good info.  I think I may go for a visit as well and see how things go before jumping in moving there if I do.  My other consideration is Southern California which has very low humidity but can get extremely hot. I'm speaking of the inland empire or Palm Springs.  From your experience sounds like the Hawaiian climate and humidity helped a bit.  Kind of in a quandary.
 
Sorry to here about your Dad breaking out with Grovers.  I think you have a point that there should be a study about family genetics and Grovers.  Too much of a coincidence to have four close members with the disease.

All my best,

Jeff

[Geraldine]

Interesting...my Grovers is so bad...always...that I can't even do a day trip...or even more than a  3 hour outing, max.
Am I alone in this severity level?
Geraldine

[TomA]

Geraldine,
It does sound like you have a rather severe case. The severity of mine comes and goes. It was at the point that it got to where I could hardly stand it last winter/spring that I went to my Derm and went on Soriatane. I was about ready to try anything. I'm kind of "one track minded" I guess. I've always been able to ignore mosquito bites without scratching, and I likewise ignore the Grovers and go on with life most of the time. I am finding the hair dryer treatment helping. A couple of days ago I had a spot on my back that got so bad I just couldn't take it any longer and went into the bathroom in the middle of the afternoon, took my shirt of and gave it a good shot and it stopped. I was pretty amazed.

Hang in there and best of luck.

TomA

[Geraldine]

Yes, very severe. And it is spreading to other areas, now. Up along my sides. One on my right bicep...and one near my back near the bottom of my rib cage...Have FINALLY gotten the report from the Charleston Derm Specialist...nothing but a copy of the lab report stating Grover's likely! No treatment suggestions, no visit write up...not even a record of the steroid cream he prescribed, and called in to my local druggist...zip! $700 for one sheet of paper...lab report! Have finally realized I need to enlist my local derm who failed to diagnose me for two years! Hoping he will be able to accept his failure and work with me.
I am afraid of soriatane...but foresee that I am getting desperate.
Yes, the hot drier seems to be helping...I have been disappointed at hopeful remedies so many times now I hesitate to be too hopeful about that!
Geraldine

[TomA]

Geraldine,
I do hope you can get better Derm help. I've found that although my Derms haven't taken Grovers very seriously, they have bee willing to help with various medications. I'm currently using Dovonex, which is fairly expensive even after insurance. I think around $30 or so.

You seem to be describing all the usual areas. I've had them on my stomach, chest, arms, back and legs. I'm curious as to why you feel you can't go out. I tend to ignore them and do what I want after all these years.

I understand what you are saying about the Soriatane. There is a long list of side effects listed on line and on the package insert. I experienced many of the mild ones even though I only took it for a month. The month treatment did give me six months of relief.  Perhaps several months of treatment would give more long lasting relief. SoCalMom was on Lamisil tablets for several months, as she reports earlier in these postings, and at last report was still free of symptoms. If the Grovers is driving you as crazy as you report, you may want to discuss taking one of these for a while so you can get relief. It's amazing what a period of relief does for you. Even the hair dryer treatment proposed by BobA has been bring me a lot of relief so I'm not currently having to consider more serious treatment.

Best of luck.

TomA

[Geraldine]

Hi Tom,
As we have learned on this list, there are all levels and kinds of Grovers presentations. The burning and pain I experience can't be ignored. It is excruciating. The only relief is getting home and applying wet hot packs and super Gold Bond powder on a thin coating of Sarna...and recently BLUE EMU cream. I am worn out from the pain.
Geraldine

[Elisa]

Hello Everyone!  Happy New Year and Happy Grover's Free Year!

In France one can wish Happy New Year until January 31st so I am in time!

I just wanted to say "hi" and let you know that my 99% disappeared Grover's is still 99% -  I still have a tiny tiny insignificant patch (like 10 spots) that doesn't bother me THAT much because it doesn't itch.  I must say however how sorry I am to read the pain that Geraldine is going through.....my word, that is the worst case one can read about on this forum.

Geraldine, have you done other tests? I don't wish to offend you as I am sure you know you have Grover's like the rest of us, it is just that you are suffering to such an awful extent, I feel for you......

We all have our "crosses to bear" and I am in pretty much pain with my fingers even though the Grover's has practically entirely cleared up after one year.  My new diet has done nothing to help my fingers. Stopping all the dairy products has done nothing except deprive me from stuff I like eating....like cheese! I'm seeing a rhumatologist tomorrow after having tried everything else.  I'm not even sure that it is Grover's related - although it arrived at the same time.

Take care all,
Elisa

[Geraldine]

Hi Elisa,
Yes, Grovers re lab report. I also am not sure this is ALL I have. There may be a compounded diagnosis. Have no idea what else may be added on to the Grovers. the "specialist" derm did not want to HEAR anything I had to say re what I had been experiencing for over 2 years. He was more interested in telling me about the people he has met socially in the town where I live! He knew what he thot it was, and just wanted a punch biopsy. When I finally got my "records" from him (last week after I made another phone call), there was nothing but a copy of the one page lab report. No office visit notes, no treatment plan nor suggestion...zip. $700.00 worth of zip, except for the lab report. Not even a record of the prescription and "your diagnosis is" phone call the derm doc did make to me when he got the lab report several days after the punch biopsy. This is a MUSC...Medical University of SC doctor that it took 5 weeks to get in to see!
Geraldine

[BobA]

Even the hair dryer treatment proposed by BobA has been bring me a lot of relief so I'm not currently having to consider more serious treatment.

Best of luck.

TomA

I'm glad to read that it's helping even a little. Please remember that I use it alongside other things, such as the sorbolene (with 10% glycerine) and the anti perspirant. My philosophy is to get rid of the water, put on a barrier, and then attempt to stop any more water (sweat) being deposited. Also please remember that I don't just dry off after towelling off, I SEAR any spots that look like forming 4 or 5 times in quick succession. I've found that just once or twice and it will continue to develop. Resistant little buggers.

If this works for even one person then I'll be happy 

[Geraldine]

Oh, I'm using the very warm dryer too...often and usually in place of wet hot packs...and with Blue Emu.
Thanks, thanks, thanks for the suggestion!
Geraldine

[TomA]

Geraldine,
I'm surprised to hear about the wet hot packs helping. I can't even take a hot shower without the spots getting stirred up. I do use the hair dryer in conjunction with Dovonex, which is prescription, when needed but am using less. I find Sarna's relief good, but short lived. The Dovonex brings more permanent relief, but when used without the hair dryer actually aggravates the spots for a while until they settle down. Thus on really bad spots I was putting Sarna on top of the Dovonex, but with the hair dryer I'm not having to do that. I'm not searing my skin any more than I have to and am still having good results. What is the blue EMU you speak of? I've not heard of it?

TomA

[Geraldine]

HI TomA. Blu Emu at most big drug store. Will be with Sarna and joint creams. It actually has an anti-inflammatory so perhaps why works. I do combine it with Sarna sometimes. I do have the Dovonex, but really want to try to keep off the drugs. All are sucked in thru the skin. I have as much pain from under the skin welt kind of stuff as the actual spots cause. And what really gets to me is that the spots often seem to be faded, and then revive and scream again!
Now I have developed a kind of fragile skin that makes any clothing around my waist really painful. I can only last an hour or two, at most. And yes, the HOT wet packs seem to short wire the pain for an hour or so...Sarna and Gold Bond menthol powder on top of that...HAVE to keep DRY!
Geraldine

[Sarri]

Hey Everyone!!!

Well, I would just like to say, in response to SeattleJeff's "humidity" comments....that, I've been using a vaporizer in my home the past week, and I have noticed some improvement in my skin. I am also using minimal moisturizing lotion 1-2 times daily on just the spots, which seems to be helping at this stage in my Grover's progression. However, just a tip, don't get too crazy with mulitiple lotions / creams, as I have found that can make the situation worse ~ Less is definitely more, at times

I still have the crazy-itching on my belly when I wear certain clothing....not sure what material / dye / item triggers this...if any - maybe it's all just "Grover's". I also have to be careful where necklines / elastic bands rub against my skin...as I am super-sensitive to these things.

Also, I am getting ready to go into my 3rd month of taking 120,000 IU's (daily) of vitamin A. This is my 2nd go-around with this treatment, and I am trying for 5 months this time...instead of 3, like I did over the summer. (And, FYI, I am being monitored by a doc and doing 3 weeks on...1 week off, so don't just do this if your doc isn't keeping an eye on you).

However, so far, I've seen the fastest improvement in my skin condition by putting more moisture into the air. I wish I would have tried this sooner! I've read on several websites this could help, but just didn't try it. Oh well. I am going to keep it up and see what happens.

Best wishes!
Sarri

[TomA]

Good suggestions, Sarri. Not tried a vaporizer. We had a humidifier as part of our heating system in our last house. Don't know if it had much of an effect. I'm taking 75,000 IU of Vit A daily, and don't really see it doing much, but I guess I'd have to stop for a while to see if it got worse.

Geraldine, glad the hair dryer is helping you as with me. Perhaps the wet, hot packs, although giving some short term relief, are exacerbating the condition and adding to the severe symptoms you are going through. I know many of us on this site have mentioned that even a warm shower makes things worse. Perhaps if you leave the packs aside for a couple of weeks and just use the dry heat you'll know if there is a correlation. I've not seen the blue EMU around here, but I find I need very little medication when I use the hair dryer at night after my shower and in the morning before I dress.

Hang in there all.

TomA

[Seattlejeff]

Good suggestions, Sarri. Not tried a vaporizer. We had a humidifier as part of our heating system in our last house. Don't know if it had much of an effect. I'm taking 75,000 IU of Vit A daily, and don't really see it doing much, but I guess I'd have to stop for a while to see if it got worse.

Geraldine, glad the hair dryer is helping you as with me. Perhaps the wet, hot packs, although giving some short term relief, are exacerbating the condition and adding to the severe symptoms you are going through. I know many of us on this site have mentioned that even a warm shower makes things worse. Perhaps if you leave the packs aside for a couple of weeks and just use the dry heat you'll know if there is a correlation. I've not seen the blue EMU around here, but I find I need very little medication when I use the hair dryer at night after my shower and in the morning before I dress.

Hang in there all.

TomA

Hey TomA,

SeattleJeff here.  Thanks for the hairdryer tip.  I've been trying it and it seems to work on those that I catch which are beginning to form.  But it doesn't seem to work on those that are already formed.  Mine seem to grow from small to big overnight.  Wondering if this technique only works on the small bumps you see, or also on those already developed.

Also, you may have mentioned this in your first post about this, but do you use the low setting or high setting on your hairdryer zapping these little suckers.  The high setting seems to scorch my skin.  And how long do you hold it there on average?

Another sideline to Sarri's comment.  I lived in Hawaii for eight years and never had an outbreak of Grovers or hardly any skin condition.  Only when I moved back to Seattle three years ago, and then boom.  So I think there might be something to the humidity aspect in helping our situation.

Thanks for your great tips!

Always,

SeattleJeff

[Seattlejeff]

Hello Everyone!  Happy New Year and Happy Grover's Free Year!

In France one can wish Happy New Year until January 31st so I am in time!

I just wanted to say "hi" and let you know that my 99% disappeared Grover's is still 99% -  I still have a tiny tiny insignificant patch (like 10 spots) that doesn't bother me THAT much because it doesn't itch.  I must say however how sorry I am to read the pain that Geraldine is going through.....my word, that is the worst case one can read about on this forum.

Geraldine, have you done other tests? I don't wish to offend you as I am sure you know you have Grover's like the rest of us, it is just that you are suffering to such an awful extent, I feel for you......

We all have our "crosses to bear" and I am in pretty much pain with my fingers even though the Grover's has practically entirely cleared up after one year.  My new diet has done nothing to help my fingers. Stopping all the dairy products has done nothing except deprive me from stuff I like eating....like cheese! I'm seeing a rhumatologist tomorrow after having tried everything else.  I'm not even sure that it is Grover's related - although it arrived at the same time.

Take care all,
Elisa

Elisa,

Good seeing you on the forum again, and great to hear you are still 99% Grover free.  Miss seeing you here.

I'll be interested to here what your rhumatologist has to say, and how the tests come out.  I'm sure he will check how your auto-immune system is working through these tests.  Remember I too had osteo-arthritis in my fingers just before I got Grovers.  I think there is some connection.

You've licked the Grovers, so I hope the rheumy can give you some answers about your fingers.

Again good seeing you here again. 

Best always,

Jeff

[TomA]

SeattleJeff, it was actually BobA for Australia who first shared the hair dryer trick. I use it after I get out of the shower to generally dry all my skin then focus on the spots. It does work better on those just beginning, but for me it takes the itching away for all the spots, but it doesn't take the spots away just the itch. I use the low air setting but a fairly hot setting. Yes, it can scorch the skin if you hold it too long. I try not to do that, but if it's a real itcher you have work on it until its sufficiently hot to stop itching. Some spots I have to do more than once. I'm also using more lotion since this drys out the skin so much.

Don't know what to say about the humidity. I've lived in Chicago and now in western Virginia. I don't find a lot of difference between summer and winter. I'm a full year itcher, I guess.

TomA

[BobA]

Hi Seattlejeff,

To answer your questions from my own situation, after I found water trapped against my skin causes my GD I do anything I can to remove water when wearing a shirt. I use the hottest setting with the lowest air. It does stop the new GD and I find I can stop even the developed ones from getting worse and get them healed in a few days, week at most. If you can find my first post you'll see what I wrote, but basically I really REALLY hit any developed ones until they feel like they're stuck by a hot needle. Getting warm just does nothing. BURN them, then BURN them again. At least 5 times in a row within a minute, then every day until they stop stinging when the heat is on. I find this shows they are neutralised. Getting warm is drying you off but getting hot until it hurts is treating the GD.

Overall, I dry myself in all areas that would hold moisture under my clothes, put on a sorbolene (with 10% glycerine) cream as a moisture barrier, and then use a no fragrance antiperspirant to prevent sweating. I look Grovers free, but if I did none of this I'd be covered with it.