Grover's disease

[Geraldine]

HOW interesting! Lamisil! Which indicates a fungal element to the Grovers...which we have almost ALL been assured Grovers is NOT! I'll add it to my list of "let's try this" for my Doc, who is clueless re what to prescribe or do for me.
But be careful what you ask for from Doc! I suggested Hydroxyzine, which Doc gave me a prescription for, but he gave a 25 mg to be taken every 6 hours as needed. Dumb me, I did take one at about 3:00 AM one morning, and it kicked my behind for about 12 hours! Was dizzy, as in room spinning, and totally wiped out...just smacked me! Now I realize when I next get desperate enough to try it, I'll quarter the dose and certainly NOT even consider taking it if I have anything to do or anywhere to go...etc.
Geraldine

[Dondi]

SoCalMom So glad to see you too!  Nice to hear your doing pretty well too!   Sounds like we both have our moments but staying relatively clear.  Holidays coming, Have a Happy Thanksgiving!  Stay well!  -Donna

[SoCalRoy]

Hello Everyone and Geraldine,

I want to thank you for your suggestions. That is my assignment for the weekend is to gather up all the info. I can in regards to trreatments. So when I see my Dr. this Wednesday I will be ready to ask alot of questions and reallly make good use of the office visit. With what I have read so far is that this diease affects everyone in different ways and treatments vary person by person. Also I have realized how serious this condition can be and I wish that my doc would have explained that to me. But on that note I should have taken it upon myself to find out more about Grovers. And I will be the first to admit that I stubborn and I wasn't going to let it slow down my routine.  I guess I was my own worst enemy and didn't realize it. 
I have found so much helpful information here and I am so Thankful for everyone and what they contribute. Well I have more reading to do and I will keep all your suggestions in mind. Thanks Again Good Luck To You All....Roy

[Geraldine]

I personally don't think Docs know much )I KNOW mine don't!) And you are not headed for critical care...it is a chronic, miserable condition, and a major danger can be what uninformed docs prescribe...not the condition itself! Some serious and dangerous side effects out there! Yes, keep reading and remember where drugs are concerned. less is more.
If sleeping is a problem, my Doc has no problem with nightly Ambien (Zolpidem)...NOT Ambian CR, because it is not generic, and is very expensive...and it can linger in some people...
Geraldine

[newgrovers56]

Hi Geraldine,
I am so sorry to hear about your reaction to hydroxyzine.  I thought I had explained that it makes me very drowsy which is why I only take the 25mg one hour before going to bed.  I tried it once during the day and was so sleepy I could barely get anything done.  I think it has helped me improve but we all have to experiment to see what works.  The lamisil would be interesting to try.  My derm says you can buy the cream over the counter and that it is the same strength as the former prescription.  I am considering trying it on a couple of areas to see if it does anything positive.
David

[Geraldine]

Hi David and all,
No problem re hydroxyzine! I've got it, and will use it if needed...Like for a day like the Grovers Sunday from hell I had 2 or 3 weeks ago!. It wasn't the sleepy that bothered me, it was the spinning head. But I am a BP patient, so drug interactions are probable.
I appreciate ALL input! We have to find our own ways through this!
Geraldine

[Seattlejeff]

Hi everyone- Just popping in.    Sorry to see so many new posters with grovers.  So much for rarity!   Jeff, I take a anti anxiety drug and when the dermie prescribed the atarax Brand name of hydroxyzine, he told me not to take the 2 together as both are central nervous system suppressors.    I have dry eye syndrome and I found I couldn't use it as my eyes hurt from it and my mouth was incredibly dry.

When I first developed Grovers I had major itching spread over my scalp and my hairdresser saw that I had the same reddish purple marks as she saw on my arms. I would read it wasn't usually on the buttocks but I had it there too.    I also had a vesicles inside my lips, and the base of my back, for a few days before it really flared and what I thought was the start of a pimple was a mark from grovers. It took several months to go away and it itched.   I think everyone is different and have areas affected by grovers more so then others.  I also found cool compresses  and things like vinegar (smell dissipates) helped relieve itching after about 10-15 mins.  For the scalp, I was given a script for I think Clobex shampoo, but  the intensive head and shoulders shampoo helped a bit and so did tea tree shampoo.  Of course all of its temporary for itching.  i found Grovers  skipped around, you would think it was getting better and then surprise.  Well  hope  you all find what works for you.  Its amazing how far we will go to stop  the horrible feeling.  I bet if one of these doctors ever got it , they would be researching it. For me I still feel it is some kind of auto immune reaction.  Take Care all.   ---Donna

Hey Donna:

Nice to see you on line again.  I thought I read your Grovers is better.  I hope so.  I know it would be the best Christmas gift I could receive.

Thanks for your comments about taking Hydroxzine with another anti-anxiety drug.  I suspected they would not interact well.  And I can't very well go off my anxiety and anti-depressant right now.  Maybe at some point I will be able to try it as it seems to be working for some.  Side effects sound kind of icky!

Also, I'm totally with you.....I think Grovers is some kind of auto immune reaction as well. I concur being in the sun all my life didn't help matters.  But, there seems to be kind of a pattern I see developing here with some members.

For me, my whole episode started with a diagnosis of Osteo-Arthritis in my fingers which I think Elisa might have.  Mine is not as severe, but shortly thereafter I developed a rash on my neck upper chest.  Saw my dermatologist and through a biopsy we discovered it was folliculitus. Thus treated me with Elavil, you name it.

Then a couple months later I noticed activity on my back.  Not the same kind of red rash, but clusters of red bumps, like acne.  Luckily not a lot of itching.  He took a biopsy of my back and determined it was Grovers. 

I, like many others, have had problems with my scalp.  Kind of flare ups every now and then.  They seem to occur a week or so after a haircut.  Or randomly.  I use T-Sal and that helps clear it up.

A couple of weeks ago my dermatologist took another biopsy on my chest where I had some pustules or
small red bumps.  The biopsy came back as folliculitus again however my derm said the base of my follicle was loaded with white blood cells.  Like my body is over reacting or attacking itself.  Thus, she concluded we may need to look into an auto immune problem.   In February by the way, I was tested for Lupus and it came back a false positive.  But generally when this happens they suggest having the test taken again a few months or a year later to be sure.

So one of my points to some members is, they may have Grovers but also be dealing with folliculitus.  They both kind of have the same presentation on one's body.  Also, the pattern of scalp involvement, osteo-arthritis in fingers, and some members with thyroid problems is intriguing.

The take away for me is I have two different rashes, but I think they are both due to something auto immune and I intend to find out.  I will surely let you and everyone know.

All my best to you,

Jeff

[Seattlejeff]

Hello Roy,

Welcome to the Grover's forum.  I sympathize as a fellow Grover sufferer but normally Grover's doesn't appear on the face.  Hope you're managing ok with whatever it is.

Hello Everybody,

I saw my toxin specialist today.  He says he's never known anyone as allergic as me........so what does one reply to that?

I'm already sick to death of eating only white rice, veg and fruit and practically nothing else.  Any ideas?

Best,
Elisa

Hey Elisa,

I'm sorry your test showed so many sensitivities or allergies.  I shouldn't complain so much about mine I guess.

I met with my nutritionist yesterday and learned a lot.  First of all you may be allergic to wheat, for example, but still be able to eat Spelt bread because it is in a different category of the wheat family.  Generally there are substitutes to just about anything you are allergic to.  All this information came in the packet sent with my results from Signet Labs, called the Leap Program.  Maybe you can get a copy from them or from the company you had your test with.

I also found out you can trigger a reaction if you keep eating the same foods every day.  Thus rotating your diet is important.  My nutritionist came up with a really nifty weekly menu plan for me.  So if you haven't consulted with a nutritionist you might want to.

You should not have to be just restricted to the foods you mention.  Seems to me this could be unhealthy and affect your quality of life too. 

Maybe some of the information I'm giving you is helpful. 

Let's talk more,

All my best,

Jeff

[Geraldine]

Hi All,
Question...
Anyone have any experience using Dovonex (Generic name: Calcipotriol, or Calcipotriene)...skin cream. Normally prescribed for Psoriasis?
Geraldine

[socalmom]

Geraldine,

I used Dovonex for a 7 months.  I have no idea if it made much of a difference in the clearing of my Grovers.  It certainly did not make things worse.  I stayed away from the steriod creams after reading so many negative comments about rebound rashes. I did use Zonalon Cream (doxepin hydrochloride 5%) for relief from itching.  I used it sparingly at night because it does cause drowsiness.  I felt more comfortable with the cream than the oral prescription. (I felt like I had more control) I also used Lidocaine 3% for those emergencies when I thought I would scratch all of the skin off of my body.  I used it as a "spot treatment" and VERY sparingly.  For over the counter relief, I cannot say enough about Sarna. (except for the smell) 
I was lucky to find a Physicians Assistant that worked with me and was interested in helping me find a solution...or at least some relief from my Grover's rash. The Dermatologists seemed more interested in Botox and cosmetic treatments than my rash.  Now that people's spending habits seem to have slowed down, maybe more Derms are paying more attention to rashes and acne treatments again.    I tried so many different treatments. From creams and oral antibiotics to the Lamisil.  The best part of the process was finding someone that would work with me and had a positive outlook.  I felt like I had a partner in the Physician's Assistant.  Who knows...maybe that was catalyst to my recovery.

SoCalMom

[Geraldine]

socalmom,
Thanks for the input! If no clear relief from Devoonex, I see no point in adding yet another tube of cream or ointment to my growing collection!
I did get desperate and tried a quarter of a 25 mg  tablet of hydroxyzine (abt 5-6 mg) this afternoon and it was like magic! In 20 min i had relief!! It was interesting, because I knew the burn/itch was there, but it was submerged...almost gone...easy to forget or ignore.
Thanks Jeff!
Geraldine

[TomA]

Geraldine,
I've used Dovonex for a good 1 1/2 years. When first applying it, especially before bedtime when the itching seems to be worst, it makes the itch worse for a while, but does improve the spots in a day or so. If I'm in a bad itching place, I'll put Sarna on top of the Dovonex to cool things down so I can go to sleep. I find if I just use Sarna it is quite temporary and doesn't do anything to heal the spots. My last tube of Dovonex lasted for over a year making the price not so bad. My co-pay on the tube I just got was $43.

I've tried the Lamisil cream and didn't find that it did anything for me. Both the Lamisil pills that SoCalMom has used and the Soriatane I've use do bring relief, even though they are for two different conditions. I only took the Soriatane for a month, but did get 6 months of relief.

My Grovers is coming back and I may have to go on the Soriatane again. I talked to my Derm about Lamisil before going on Soriatane and she felt more strongly about the Soriatane from her experience. But if you are child-bearing age, your Derm probably won't put you on Soriatane because of birth defect issues.

Best of luck to new members who are beginning the journey.

TomA

[Keith Johnson]

Hey fellow Grover'ers, hope everyone is having a itch-free week. This has been the best week I have had since my first flare up in June( knock on wood )...I was just wondering if anyone on here who had Grovers and it went away, what was that like? As far as did you just wake up one morning and it was gone or did it slowy dry up and leave? Knocking on wood here, but mine last 3 days have been itch free and looks a lot better on back and chest. 

Thankx in advance

Keith 

[socalmom]

Hi Keith,

My rash dried up and went away.  It does come back (mildly) when I sweat but dries up and disappears after a few hours.  My worst breakout since my rash went away was last year in Aspen over Christmas when it was extremely cold and DRY!!!!!  I took steam showers and lathered on lotion in the steam and it seemed to help.  Hot showers used to exacerbate the rash when it was severe, but the heat does not bother me any longer at all.  (Just the sweating)

We will keep our fingers crossed for you and your recovery.

SoCalMom

[Geraldine]

Need some input!
My "spots" have mostly gone away since a really bad flare up forced me back to steroid cream. The pain has continued but has moved down to my abdomen...like a band of burn below my navel...from hip bone to hip bone. I can't stand any clothing, even a loose waistband. This seems to be getting worse instead of easing off. I used to have a fairly (burning) pain free morning and early afternoon. Now I am only getting 2 or 3 hours after getting up. I'm beginning to think there is something wrong besides Grovers. Anyone else out there who has had similar experience?!
Geraldine

[Dondi]

Keith-  My grovers rash slowly dissipated, on occasion I have mild itching, mostly on my forearms and upper inside of arms and around kneecaps.  But no rash thankfully.  When it is humid is when I tend to feel uncomfortable, or very stressed.  I had other issues going on all at the same time due to other health issues. I tested twice for grovers, had thyroid issues and  have diabetes which at the time was out of control.   Then on top of that  a few months in, my son brought us scabies and it caused a lot of confusion here. 3 of us were biopsied, hubby I think it was five times, and me twice, still I was the only one who came up with grovers on biopsies. And had the reddish purple rash, and as I said the itching from time to time, where everyone else here is fine.
Its been, months now, and honestly I don't know what I would do if it came back like it had been. 

Geraldine- I also have trouble with materials against my skin still.  I do best with cotton.  I ended up investing,  and I guess also spoiling myself rotten with high thread count sheets.  I use rich moisturizers and usually dove soap or a shea soap.  Since  all of this my skin has been more sensitive and it was to start with already.  Have you had the usual bloodwork done? My 1st dermie tested me for a assortment of thingd, such as kidney, liver, thyroid function, blood counts.  The usual breakdown of white cell monocytes lymphocytes, eosinophils and then auto lymphocytes etc.  Eosinophils were elevated  reg and auto. So was thyroid and it triple the following month when I went back to endo for testing and tested positive for antibodies, Hashimotos.  Endo didnt think for sure it was causing the problems but over a yr of thryoid med increases I improved.

[Geraldine]

Hi Dondi (and all)
I have been on thyroid for 30 years...Hashimotos in the 1970's = removed thyroid gland. Supposedly am on the correct thyroid. Lots of blood work. Groovers has been diagnosed on basis of biopsy. I Have increased amount of daily thyroid, with no positive results. Had lots of blood tests done when sent to neurologist...and not sure re derm specialist who finally diagnosed me. He had me in and did 2 punch biopsies so fast I actually don't recall if they took blood...likely not. He was not interested in the other doctors' test results I took to him. He was not interested in hearing anything I had to say. I was referred for a diagnosis, and that is what I got. Then reverted back to my GP who is a gerontologist. But he is clueless, and no follow up until I called and called.
Enough...
Geraldine

[Dondi]

Hi Geraldine- I also was diagnosed from a biopsy, additional bloodwork was done at the same time as 1st biopsy. A 2nd dermie I went o also did a biopsy, with the same result. In my situation, I apparently had borderline hypothyroidism for a couple yrs  but it wasn't bad and since I have heart issues, the endo just didn't feel it warranted meds.  I really was feeling ill and besides having to have more stents put in my heart, I had infection from the procedure and then several times throughout the year was sick.  Normally I am pretty resistant to illness.  I did notice that my skin was becoming drier, figured due to hitting 50, but then I just lacked energy and felt in general weird.  Couldnt put my finger on it, but then the rashes started hives and vesicles and then a burning sensation and a reddish purple spotted rash, etc.  The 1st dermie and the immunologist I went to both felt like more then 1 thing was going on. He did ask me about my thyroid and I stupidly said well it is tested reg. and the endo hasn't said anything, so the dermie didn't say muc about it. But I asked for a copy and saw myself  something wasn't right and when 4 weeks later I was tested agasin by the endo it had tripled and I was put on thyroid meds.  It was increased very slowly but as time went on my health got better.  I had a case of mild bronchitis and oddly or coincidentally, I started to get a bit itchy and my thyroid needed to be checked anyway and I needed a increase, as a matter of fact he gave me 2 increases in the following 3 months.  Maybe it is just me and possibly all my troubles began due to a antibody attack or whatever it would be called and thats what triggered me off.  Obviously we are all different in what causes this nasty skin rebellion.  I wish you well, hope you find some comfort soon.   

[Geraldine]

Hi Dondi and all,
One thing I did not recognize in a couple of Grovers descriptions is "a reddish purple spotted rash." I have "spots" that are often tiny and usually scattered, but can actually feel like someone is jabbing a pin in the spot, but nothing purple.
Another thank you to at least two listers...re Sarna. A couple of you said you didn't like using Sarna because of the smell...which I thought strange, as is is just a menthol smell. THEN I finally understood! It is the later, lingering odor Sarna produces! For months I have thot that the "odor" i kept smelling was from my head/hair! I thot I had some scalp Grovers condition that smelled! i have tried every shampoo in the world! I have scrubbed my scalp with baking soda for days on end...all to no avail! Now I realize it is not my head or scalp! It is Sarna! Membership on this Grovers list is like GOLD! Thanks to all who share and respond!
Geraldine

[Elisa]

Dear All,

Some good news:(touch wood).  I was diagnosed with Grover's almost a year ago.  It has gone.
With no medication, only  flower cream treatment, almost a year later it has 99% disappeared!  Please pray for me that this will now not return with vengeance!  I did a big work out at the gym this morning, yesterday morning and the day before.....nothing!  No spots.

After discovering my enormous quantity of food allergies I have modified my diet which is most unpleasant to be honest but even my ugly painful fingers are improving.  I can eat only veg/fruit and white rice.....

So there is hope.  And things do seem to get better, if only temporarily (which I hope mine is not).

All best to all!  Thank you all for your support and advice during this terrible year of Grover's.  Thanks especially to Sarri and to Jeff and to JD.

Take care all,
Elisa