Recent Posts

Pages: [1] 2 3 ... 10
1
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Elisa on Friday May 26, 2017, 07:05:42 AM »
Hello Olive,

I suggest you read through the zillions of pages on this thread.  You'll find on these pages some temporary solutions to Grovers, albeit quite different solutions....nobody really knows.

Everyday I plaster my bra line in cream (sort of shea butter but made with plants) - there's a lot of reference to it on here.

We are all coping with our Grovers, irrespective of the stage it is at and you will too.  You will learn how to live with it, to the extent that it doesn't intrude that much into your life (well, of course it does, but I'm being positive....).

All the best,
Elisa
2
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Olive on Friday May 26, 2017, 02:32:29 AM »
Hello! I'm a 60 yo female with Grovers's disease. I have had this condition for years. Recently, the itching and painful skin lead me into the derm office one again. I was just prescribed sodium sulfacetamide 10%/sulfur 5% cleanser. The doc also wanted to start me on a low dose long term antibiotic. I've been down that long road before and didn't want to go there again. I did request spironolactone as I have had success with this hormone blocker before. So far, not much improvement as my conditions waxes and wanes. I have very painful areas under my bra line and crazy itching on my back. This flare has my scalp and itching and bumpy. I also have a history of Hashimotos throiditis, but not hypothyroid at this time according to my last labs. Every year I mix and match my hydrocortisone and fungal cream with limited success. As summer is approaching in Texas, I am hoping for some new suggestions to avoid the painful bumps under my bra line. I love being outside but am having a harder time with the heat aggravating my condition. I'm irritable and once again looking for a soultion for coping with this horrible skin disease. Is Grovers disease considered an autoimmune disorder? My derm acted like it isn't a big deal, but I feel other wise. Yesterday I had intense itching that doesn't respond to OTC antihistamines. Derm doc didn't offer any thing else for the itching other that the wash. Anyone have any suggestions for the itching other that the moisturizing lotions?? Thank you for listening and letting me share my story.
3
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by TomA on Wednesday May 24, 2017, 09:37:25 PM »
As you can see from my previous posts, for the past several years I've settled on Triamcinolone cream and them blast the spots with a hair dryer on high, which takes the sting away immediately​. I've not found anything else that works as well.
4
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by tk-itching on Wednesday May 24, 2017, 07:18:37 PM »
Tom,
Minocycline is a form of tetracyline, an antibiotic commonly used to treat acne.  I have been taking it daily for about 2 years.  I started taking it as needed a year earlier.  It did help, but seems my body is not responding to it any longer. 

My current GD flare up is not my most severe, but it is the longest single period that I have had a rash and itching.  I am going to the dermatologist today, and plan to discuss all options.

Tish
5
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by TomA on Tuesday May 23, 2017, 09:05:07 PM »
t-shirt, thanks for joining us. I want to speak first of all to the Accutane. It, and other such treatments were discussed on here 8-9 years ago. I talked to my Derm and she put me on Soriatane, a similar retinoid. I had to go off it after only a month due to severe side effects. Six months after going off it I started getting blood in my stools and was finally diagnosed with ulcerative colitis. I went on a treatment plan for the UC, but the medication made things worse, not once, but twice. I went off treatment and over time it cleared up with my no longer having any signs of it. Coincidence? I think not. I discovered shortly afterwards that there were class action lawsuits against Accutane for causing such things as UC.  So, please be careful before starting anything like this. Is Minocyclinea Grovers treatment? I've not heard of it. What are its side effects?

I live in southern Virginia and can have outbreaks year around. I've not yet discovered the triggers.

TomA
6
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by tk-itching on Tuesday May 23, 2017, 08:26:25 PM »
I am new to this page.  I was diagnosed with Grover's Disease 4 years ago from biopsy results, my first flare up was 9 years ago.  I am a 44 yr old female, so my GD started around 35.  My normal areas of outbreak are my upper stomach (under my bra), chest, and breast.  When I have a bad flare up, I will break out with the rash on my arms, legs, and back.  My flare ups normally occur in the summer months, but have occurred once in the winter and a few times in the spring.  I live in the deep south so it is HOT!! There is NO way to avoid sweating or heat!!  I also enjoy being in the sun.  I am not a crazy sun person - I don't over tan, but I like being in the sun.  I have been taking Minocycline for daily for 2 years.  Eight weeks ago I ran out of my meds for 2 weeks, and bam the Grover's rared it's ugly head.  I have been back on the meds for 6 weeks now, and although the flare up is much better it is STILL not completely gone. 

Has anyone been prescribed Accutane?  If so did it help? I go to my derm tomorrow and I fear he will want to give me Accutane.
7
News and Events / Black Mold, Colloidal Silver, and Tinea Versicolor
« Last post by RubyS on Tuesday May 09, 2017, 01:24:37 PM »
I have had tinea versicolor for the past year and a half. Have tried applying apple cider vinegar twice to three times a day and cutting sugar out of my diet, which slowed it down but did not stop it. Ketoconazole did not work at all for me. Neither did tea tree oil. Finally I started treating myself with
colloidal silver topically and orally 3 times/day (only low ppm colloidal silver is safe and effective to use) and within 4 days, no new spots grew, and the existing spots have started to fade very slowly (the sun's not helping too much)  I'm still continuing to take the silver after three weeks now, just to be sure that it won't come back, since summer is approaching, and I've even slowly introduced sugar back into my diet. I walk at least 1.5 hours a day in 27-30C heat and so far, knock on wood, even sweat and damp skin hasn't provoked any further outbreak. On the top of that, I have discovered and rectified the problem of black mold in my apartment:

This is very interesting - one of many articles on the effects of black mold poisoning :

http://inspectapedia.com/mold/Mold_Illness_Symptoms.php

My condition developed around a year after I moved into an apartment with black mold on its walls which I thought was  successfully removed after being sprayed with bleach a few times last spring and summer, but apparently bleach is by far NOT the most effective means to get rid of black mold. It kept coming back, not quite visibly but I would smell the  musky smell every now and then. That, over a year, was apparently enough to weaken my immune system, assisting in the overgrowth of TN, amongst other symptoms that can develop. It could be one reason that lots of people keep getting it back year after year. I strongly suggest everyone to check your home to see if black mold has a part to play in your skin condition.
8
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Maestrofred on Friday May 05, 2017, 04:15:26 PM »
I just saw an ad on Facebook that looks promising for helping during the summer months.  The link below is for a new technology that helps lower your body temperature when you wear a shirt that cools as you sweat.  I'm just curious as to whether anyone on here has tried one of these yet.  The reviews look promising and it may help us from breaking out in a rash on a hot summer day.  I'm thinking that it might be just the thing to wear when I'm outside cutting grass on a warm summer day.

www.ArcticCool.com/Shop
9
Skin Complaints and Skin Disorders / Re: Granuloma Annulare
« Last post by nicoleloh on Tuesday May 02, 2017, 06:09:08 AM »
I'm a 40 year old female in good health who has been suffering from Granuloma Annulare for over 3 years.  Here is my story:

I noticed 1 red bump on my shin in 2014.  I thought it was an ingrown hair.  But in never went away.  Then after awhile a second bump developed.  So I had my first (of many) visits with a dermatologist.  Initially the dermatologist thought it was Molescum Contagiousum.  A biopsy was taken and the results came back as Granuloma Annulare.  At that point, I was relieved.  At least I was now diagnosed with something that wasn't contagious - How foolish was I?!!  When I look back thinking about how less than thrilled I was about having those TWO bumps on my legs, I just want to laugh at myself!  What I wouldn't give to have just TWO bumps on my right shin!! 
More and more bumps popped up over the next few months.  At first my GA was in the form of papules, not the lesions that you typically find associated with GA.  They focused mainly on my knees, both front and back and there were so many little ones that they looked like bug bites!  The GA on my knee caps tended to come in the papule form and the GA behind my knees were mini lesions.  I would look at pictures on the internet of GA and mine seemed different.  They were no where near as big or connected as it appeared in other reports of GA.
   Like everyone else, I was told that no one knew why it developed and that it would likely just go away on its own. (Yeah right)  At first my dermatologist shot all the bumps up with Kenalog injections, which worked fairly well.  I was going in once a month and some needed more than one injection, but for the most part, all the GA spots that were injected with the Kenalog went away or faded to indented white patches, as one user mentioned.  But then I started to get them all over the backs of my legs and on my elbows.  I read a post on here about a woman who said GA wasn't painful unless she put her elbow down in the wrong spot where a bump was.  I can totally relate.  That would happen on my knees and my elbows.
   The last time I had any kenalog injections, I was poked more than 40 times.  Clearly, I needed to find another solution.   It was time to switch to a corticosteroid cream.  Tried two different kinds.  Neither worked.  Then I noticed bumps forming on my stomach, and up my thighs.  The GA was getting worse.  My dermatologist took another biopsy from the back of my leg.  Still Granuloma Annulare.  I was prescribed doxicycline (an antibiotic).  I was told to take it 3 times a day on an empty stomach (2 hours from eating).  Usually, I can take medication with no problems.  I rarely get nauseous.  I took the doxicycline for a week before giving up.  It was awful.  It made me feel funky about an hour after taking each pill.  I'd get dizzy and have hot flashes. 
   I then decided to get a second opinion.  Surprise, surprise, the second dermatologist agreed it looked like GA.  He suggested I take 1500mg of Niacinamide daily.  So I did.  For a month.  I also did my own experiment where I put the corticosteroid on my arms, but not my legs to see if maybe the combination of the Niacinamide and the corticosteroid would work.  Nothing.
   So then I did some preliminary research online and read some posts suggesting that maybe hormones had to do with it.  It made sense.  Supposedly GA is more common in women and more common in 50-60 year old women.  Right around the time women's hormones go haywire.  Then I was talking to a girlfriend of mine about my "spots."  She mentioned that when she was pregnant with her son she developed localized GA - one big lesion on her arm which went away soon after she was no longer pregnant.  And if you read all the posts on this site, you read a lot of women saying that their GA actually went AWAY when they were pregnant, only to come back again when they weren't.  Interesting...
   Three and a half years ago, I gave birth to my son.  Vaginal birth, he came out quick and healthy.  About an hour after I delivered him I started to hemorrhage.  I ended up losing 3.5 liters of blood.  Hemorrhaged 4 times in the course of 5 hours and ended up needing a blood transfusion and an emergency hysterectomy.  Unbeknownst to anyone, my son's placenta had grown not just through my uterine lining, but the uterine muscle.  They took my uterus and an ovary.  6 months after I started to notice several abnormal things happening with my body.  What I don't understand is why it took 6 months, but that's a question for another day.  Maybe all the post pregnancy hormones stayed around for awhile?  Anyways, I bring this up, because several people mention that some sort of TRAUMA preceded their first GA outbreak.  If true, this would be mine.  I lost a ton of blood that day.  It took almost a year to realize that I was getting horrible headaches at the end of every day around the same time, because I wasn't just slightly low in iron in my blood, I was severely low in FERRITIN - the iron stored in your liver.  It took going to a naturopathic doctor to find out that not only was I severely anemic, but that my red blood cells were too low.  My body wasn't producing enough red blood cells, to get oxygen to my organs.  Yet with running around with 2 kids, working out, etc., my cortisol and adrenaline were being overused causing those major headaches at 4pm every day.  (fyi - started eating 100g of protein a day with iron supplements and headaches went away!) 
   I mention this because this was also the same time I noticed my first GA spot. And the naturopathic doctor also tested my progesterone, which was low.  So maybe, the people talking about a hormone imbalance were on to something?
   In January 2017 I noticed what I thought was the first GA spot on my face!  My previous, "oh well" attitude was immediately thrown out the window!!   I started researching GA more thoroughly.  I came across the study mentioned above.  The rifampin, ofloxacin and monocycline regiment taken once a month for 3-5 months.  My dermatologist was on board for giving it a try.  My pharmacy also could not get a hold of ofloxacin so it was replaced with a similar generic drug.  Supposedly, for the 6 in the study, they noticed results after 3 months with an almost complete clearing at 5 months.  I have taken 4 doses.  My GA is worse now than ever.  Unless a miracle happens during dose 5, this treatment was a big fail!
    I went in to see my OB/GYN in February 2017 who actually put me on birth control pills to stabilize my hormones.  It's been 5 months and no change to the GA.
    So I decided to do even more research on GA.  I read medical research, clinical studies, medical journal articles.  That's when I realized that for General Granuloma Annulare like mine, this wasn't going to be a situation where it was just going to "go away" on it's own as the dermatologists like to tell you.  I read that General diffuse recalcitrant Granuloma Annulare like I have was going to take something proactive to knock it out of my system.  Dapsone, Plaquenil, Humira - minor studies done - but what works for one, doesn't necessarily work for another - and some of these drugs come with major side effects. 
    I spent hours one day Googling the dermatologists who had authored the articles I found.  I called them.  I emailed them.  Could anyone help me, or at least recommend a dermatologist in the Los Angeles area who was actually experienced with GA.  Our type of GA!  Not the kind they have all seen that just goes away!  Three doctors actually contacted me back.  All on the east coast.  They all recommended I go to either UCLA or USC. 
    One particular dermatologist in Philadelphia was very kind and recommended a doctor at UCLA.  In March 2017, I tried to make an appointment.  I'll let you know how it goes... at the end of June 2017!  Yes, that's how long the wait is! 
    In the meantime, the specialist in Philly mentioned how rare our form of GA is and he suggested I get another pathologist's opinion.  So I decided to see a 3rd dermatologist.  Initially during my visit the 3rd dermatologist thought my bumps looked like Pyryraisis Rosea - a viral infection that starts with one lesion and then spreads throughout the body till it eventually peters out anywhere from 3-8 months later - - But not 3 years.  Nowhere on the internet did anyone complain of having it for that long.  While I waited for the 3rd dermatologist to get the slides from my 2014 and 2016 biopsies, I was given a low dose viral medication to take twice a day. I also started another experiment.  The 3rd dermatologist mentioned Milk of Magnesia for GA and I had read online about coconut oil, aloe, apple cider vinegar and sunlight for Pyririasis Rosea.  So every night for 2 weeks, I put Milk of Magnesia on my right leg from the knee down, Coconut oil on my left from the knee down.  Aloe from a fresh plant on my left arm/elbow and apple cider vinegar on my right arm/elbow.  I also went out in the sun three days in a row.   NOTHING changed.
   Then I got a call last week that the 3rd dermatologist (also a Certified Dermatological Pathologist) after seeing my slides agreed with the original diagnosis -- Granuloma Annulare.  I was told to up the Milk of Magnesia to 2 times a day.  I have another appointment in a few days to discuss other options.
   As sh**ty as the situation is, and as horrible as it looks (especially to me) - I'm lucky, my GA doesn't hurt or itch and as we all know, it's not dangerous, contagious or life threatening.  Don't get me wrong, I live in Los Angeles, wearing pants during our 100 degree summers is less than ideal.  And of course, despite reassurances that GA rarely goes to the face, there is proof on these pages that it does and that would be awful.  I feel for anyone who has it on their face.  I'm so happy for the girl above who's GA disappeared from her face.
   So there you have it.   In conclusion, I think that 1) it is caused by some sort of trauma  2)  it won't go away on its own 3) hormones play a factor and 4) it's an incredibly frustrating condition.  I agree with everyone who questions why there haven't been more studies.  I question why it's ok to just accept that the patient should just try everything in what seems like a wanton, random, unscientific like manner. 
   I haven't seen any 2017 posts on here regarding GA.  Here's a reminder to all of us still suffering from GA - We have to remember to log back on and tell our former co-sufferers what worked for us when/if one day we are GA free.  We are truly our own best advocates.  When it comes to GA, it is clear the medical community does not have their act together.

Thanks to everyone for listening.  I can't solve it, so I guess i just needed to talk about it!

N
10
Skin Complaints and Skin Disorders / Re: Mystery skin disorder
« Last post by JoellynC on Sunday April 23, 2017, 06:57:44 PM »
It looks like it might be related to your rosacea.  It could be Pityrosporum Folliculitis or another form of Folliculitis.  I suffered for decades with something that looked like acne, but was seasonal and was found on my upper chest and arms.  Turned out to be PMLE.  You may need to find a better dermatologist who is up on the latest research to know for sure.  The fact that Mayo clinic had no idea is unusual.
Pages: [1] 2 3 ... 10