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Let me introduce myself ... / 23 Female with HS
« Last post by LunaMama on Yesterday at 04:03:29 AM »
 :'(
Hello, this is the first time using any kind of forum and I dont know if I am doing this correct but...welp here goes nothin'!
After many expensive invasive and pointless tests I found out I have HS. I did a little bit of research on my own because my quack doctor cant tell her wallet from a desperate patient. I can see there isnt much known about this illness.
All i know is that it hurts, it leaves embarassing scars and I am not happy one bit.
I havnt tried any medications yet. I am all for a helpful one but the birth control I was on for years have caused me mothing but trouble now. I have PCOS as well. So you can see my dilemma with trusting the all mighty BC medications. Lol.
I recently had a VSG, which is a weight loss surgery, and I have dropped 72lbs so far. It has helped ease the HS under my arms but my groin area is still a big embarassing problem.
Any helpful advice or experiences to ease my worrisome mind would be greatly appreciated.
Thank you everyone. :*
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Let me introduce myself ... / Re: 31 year old female with Grover's Disease
« Last post by MHERNANDEZ on Tuesday July 25, 2017, 03:02:16 PM »
UPDATE: MY RESULTS FROM BIOPSIES CAME BACK AS : PEMPHIGUS VULGARIS(AUTOIMMUNE DISEASE) AND WILL BE STARTING TREATMENT TODAY WITH PREDNISONE 6 PILLS X5 DAYS, 5 PILLS X5 DAYS , AND 4PILLS FOR 4DAYS.  I WILL KEEP YOU POSTED ON HOW THIS GOES FOR ME.
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Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Journeyman on Monday July 24, 2017, 07:59:22 AM »
As we've agreed, Grover's is very diverse.  I'm much drawn to the notion that mine is triggered by low levels of Vitamin D, as it seems to come on with winter, and also seems to respond a little to Vit D supplementation.  I don't seem to have a problem with sun, warm weather, seawater, etc.

Just something you might care to try, if you haven't.

Good luck!
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Let me introduce myself ... / Re: 31 year old female with Grover's Disease
« Last post by golfboy307 on Saturday July 22, 2017, 03:49:02 PM »
Hi Maria and Haley,

Let us know how your biopsy comes back.  To hear you have them in places other than your chest and back would suggest something else other than Grover's. 

Haley, interesting you mention the sun.  Whenever I try to sunbathe with my Grover's it makes it a lot worse!  Everybody's a bit different with this disease.  Mine gets a ton better in colder weather (I am in the Midwest).  Mine flares with sun, pool water, and ocean water.  Booo!!!  I am not surprised that you have had some relief with detox methods.  There is a whole school of thought that Grover's is caused by mercury and other toxins.  Mine got a lot better when I quit eating fish and had my fillings changed.  Better, but not gone.
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Let me introduce myself ... / Re: 31 year old female with Grover's Disease
« Last post by MHERNANDEZ on Saturday July 15, 2017, 04:50:56 PM »
HELLO SIR, SORRY TO HEAR YOU TOO ARE SUFFERING FROM THIS RARE SKIN DISEASE.  I HAD A SECOND ROUND OF BIOPSIES DONE 3 DAYS AGO AND I'M ANXIOUSLY WAITING TO HEAR WHAT THE RESULTS ARE. ORIGINALLY THE FIRST BIOPSY SHOWED IT COULD BE GROVER'S , DARIER'S OR PHEMPIS VULGARIS.  MY DERM SAYS THE 3 CONDITIONS MIMICK EACH OTHER SO THIS SECOND BIOPSY WILL CONFIRM WHICH ONE OF THE THREE IT IS.  I HAVE LESIONS ON MY SCALP, BACK, AND CHEST AREA.  SOME HAVE APPEARED SUDDENLY BEHIND MY EARS, ARMS, AND  LEGS SO IT'S VERY FRUSTRATING AS THE HEAT OR SWEAT ONLY MAKE THEM WORSE.  SO YOU HAVE NOT BEEN PUT ON ANY KIND OF TREATMENT YET ? OR HAVE YOU JUST OPTED FOR A NATURAL APPROACH TO THIS.  I'VE READ UP ON THE SYMPTOMS AND CAUSES AND I DON'T SEEM TO FALL UNDER ANY OF THE CATEGORIES AS TO WHY I WOULD HAVE THIS?  HOPE YOU GET SOME RELIEF SOON. KEEP US POSTED.

MARIA
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Let me introduce myself ... / Re: 31 year old female with Grover's Disease
« Last post by Iain on Saturday July 15, 2017, 03:41:01 PM »
I was diagnosed with Grovers in 2016 via biopsy after visual misdiagnoses by dermatologists including an unnecessary treatment for scabies.
 I am 67 and generally in good health, however in 2016 I also suffered a diverticulosis of the lower bowel which occurred after Grovers had started months earlier.

Grovers disease is a very frustrating and distressing condition.
Since 2016 I have experimented with different ways to alleviate it.

The only one so far which I find always works for me is to bath and put a copious amount of head and shoulders shampoo on to a back scrubber belt, and gently scrub the itching skin pustules with that. After rinsing, the pustules sting briefly and stop itching. After towel drying the pustules gradually begin to dry up and subside and heal over a couple of days. Where skin eruption into a pustule has not yet occurred it will not be affected until it's accessible to the active ingredient of the head and shoulders shampoo.

Nothing else has been reliable so far, but I am still hopeful and looking.
I hope this will help someone else too.

Regards
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Let me introduce myself ... / Re: 31 year old female with Grover's Disease
« Last post by MHERNANDEZ on Sunday July 09, 2017, 10:32:59 PM »
Hello Hailey, sorry I just now logged in and saw your reply.  I don't know how to do the "introduce myself" portion of this forum.  I have attempted several times but nonetheless I am relieved I can at least connect with someone in California : ) I reside in a small town Porterville- in between Bakersfield and Fresno.  So I'm sorry to hear you too are going through this yet relieved that I can connect with someone with recent updates rather than the 5 year old posts on this forum lol. I have had very little relief as far as the itching an flare ups.  My derm prescribed Clobetasone topical ointment and it seemed to dry the lesions a little, except I ran out and on limited resources to purchase a refill as the med is $526 !! My insurance ( medi- cal ) will not pay for the refill till the 17th of this month so I'm really struggling with the itch/burn sensation.  I have a second appt on the 19th, the derm is waiting a special container that's on back order from lab so she can run a immunoflourescent test on me, as I've already had two biopsies and pathologist request this additional test before he can confirm the Grover's and begin treatment.  As far as the anxiety I am on Xanax and it helps with the anxiety attacks and helps me get some sleep, I've tried teas, reading, watching tv (really late) but nothing seems to work.  I'd like to be able to get off the meds as soon as my treatment for the Grover's begins, I am praying that the anxiety is part of the symptoms of this awful disease and the treatment will start to kick in and get off the xanax. Thanks for the tips you gave me, I will definitely try those.  Hope to hear from you soon and that your condition improves.
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Let me introduce myself ... / Polymorphic Light Eruption
« Last post by cbpi on Saturday July 08, 2017, 05:29:56 AM »
Hi from Canada,

Here is my story:

When I was 24, I was studying in Spain. I broke out in small bumps all over my legs and arms after spending the day outside.  Upon returning to Canada for Christmas, the bumps disappeared. When I went back to Spain the bumps came back for awhile and then eventually went away.  I started to have outbreaks every Spring once back in Canada, as well as, every time I went on vacation to a hot climate. The bumps were extremely itchy and I would scratch them until I bled. Each time I would have an outbreak, I would go to the doctor. I was diagnosed or presumed to have each time, with something different (eczema, contact dermatitis, herpes, lupus, allergies).  Everything proved negative. I had patch tests, biopsies, and allergy tests.  I was given prescription anti-histamines, steroid creams, and anti-viral medications.  Nothing worked. I did get temporary relief from a cream a Chinese Medicine Practitioner gave me. It is called 666 cream (yes, this is real) It relieves itch better than anything else I have used.

I suppose I wasn't diagnosed with PMLE because once my rash starts, it can last for months instead of days or weeks. My doctor eventually gave me Prednisone as each time I got the rash, it got worse.  A larger portion of body was covered and it became redder. At first the Prednisone worked.  However, last year it stopped working and I was then prescribed Zaditen. Yesterday, I broke out on my arms after gardening in the sun. So, I researched natural remedies. Today, I bought herbal supplements such as beta-carotene, anathaxin, and  a "fern" extract by Heliocare.  I also bought a sunscreen made by them with the "fern" supplement. I am hoping that these will work.  As well, I read that I shouldn't eat lime or wild parsnips??? I also read that when women reach menopause that this reaction to the sun stops. Let me know men if you have found this to be true!

Has anyone else had the rash for an extended period of time? Has anyone been relieved of this condition once reaching menopause?
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Thanks.
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Skin Complaints and Skin Disorders / Re: Linear IGA Bullous Dermatosis
« Last post by amdismal on Friday July 07, 2017, 04:58:35 AM »
I am disappointed to see (after spending days of reading through this whole thread) that no one has responded here in over 3 years. Is there anyone still out there?
I still get notifications, it seems :)

There is a Facebook group that is fairly active - search on there for linear IGA and you should find it. Facebook groups are closed, so non members can't see what you post; I think this helps, but it does make it less obvious from a Google search of the disease.
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Skin Complaints and Skin Disorders / Re: Linear IGA Bullous Dermatosis
« Last post by Hartisnbama on Thursday July 06, 2017, 09:34:32 PM »
I have recently been diagnosed with linear iga and of course started researching since there is still little known concerning this disease. Was so thankful I found this website with actual people who are going through the same thing as most info on web is all medical jargon. I am disappointed to see (after spending days of reading through this whole thread) that no one has responded here in over 3 years. Is there anyone still out there?
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