Hi I'm new with Linear IGA Dermatosis

[nicolespeanut]

Hi to all,
  
Suz,  I do think stress generally bothers skin issues and find that any kind of stress -- physical, emotional, etc. bothers my skin (though not on the diet!).  I don't know if maybe one doesn't eat right or sleep enough or work out or if it is emotional -- but there is a link.

I'll keep you posted on the diet.

Take care!
Nicole

[nicolespeanut]

How is everyone doing? I have been going through spells of outbreaks -- my scalp finally getting better and for the last week an outbreak from shaving which has been terribly itchy.  I am still on the gluten free/dairy free/soy free diet.  These days I have been considering trying the meds to see if it would help put me in remission but not sure.  Hope everyone is well.   Nicole

[GailB]

Hi All

I have Linear IgA Bullous Dermatosis.  I was diagnosed in 2000.  I had just taken a course of Amoxycillin.  At first the Dr's thought I had chicken pox or shingles but none of the meds worked.  I was then referred to a Dermo.  I had blisters on my face, scalp, back, torso and they where just started to pop up on my legs when I started on the dapsone-100mg and Prednisone. It took me approx 12mths to be drug free.  I found alcohol, sunlight, stress and coffee to aggravate the blisters.  I still can't drink coffee.  I had a baby boy last year and the blisters reappeared one week after delivery but this time they where on my legs? none on my face which was my worst area in the beginning.  After a month on Prednisone I was ok.  I haven't taken any Dapsone now for 3yrs.   My dr advised me to avoid penicillin for ever! as it appears to have been my trigger.  I am pregnant with baby number 2 so we'll see what happens this time after delivery.   I have made no real diet changes.  I don't have soy anyway and in australia we have lots of fresh fruits, veg and meat.

Gail 

[Gobe]

 

Welcome to Skincell GailB!

 

[Ginie]

Hi,
I'm new with Linear IGA Dermatosis.  I'm a 30 year old female, no kids.
It started last thanksgiving with a thing that resembled a bug bite under my bra strap on my back. It then spread slowly like a hive in a rosea pattern and even became symetric on my back.  I tried almost everything. I was finally "diagnosed" (biopsies were consistant with late stage linear IGA) in february. The doctor gave me an ointment Protopic, and I had to take some antibiotics because the biopsies got infected.  I then went on remission but now it's back. It's again slowly increasing and increasing faster if I stay long periods of times in the water (scubadiving), sweat, wear tight clothing and if I scratch.
Now I'm alternating 2 creams (protopic and flucinonide), they help a bit with the itching but they don't stop the disease.
Maybe it was the antibiotics that helped more than the cream in the first place.  Dapsone is bactericidal and bacteriostatic against mycobacteria.
And if so, why would it be since linear IgA is supposedly auto-immune?
Am I attacking un armfull bacterias that live on my skin because of their resemblance to a bug that infected me?
The other option would be allergy to something....
I'm open to suggestions and comments, at this point I'm willing to try almost anything ...

[psirosisvirgin]

Ginie

[Ginie]

Actually I've been doing a bit of reading on Dapsone. There is a really good lenghty article on it: http://dermatology.cdlib.org/DOJvol8num1/reviews/dapsone/wolf.html
It has apparently an anti-inflammatory action, which reduces the infiltration of large numbers of polymorphonuclear leukocytes into the affected tissue.

Can't wait to try it!!!

[nicolespeanut]

I have never taken Dapsone but will check out the site when I get a chance bc you never know what the future holds.

I feel like my skin has been great with the changes I have made -- no giant blisters like I got when I was first diagnosed.  I think you just get used to it and try and figure out what some of the triggers are and avoid them.  I also think it is important to be as healthy as you possibly can -- all the things you can control -- healthy eating, exercise, relaxation, laughter -- all the good stuff.  I think supplements have helped me -- vitamins and enzymes.  I do try to limit the amount of gluten, soy and dairy that I get though do have some in my diet unlike before for over 6 months where I avoided all of it.  It is all trial and error.  Sun is my most obvious trigger.

I know one of the ladies mentioned coffee as a trigger.  I almost feel like it is decaf coffee that bothers my skin more than a cup of regular. 

I am always intrigued that the disease is also something that manifests itself in young children.  This also makes me think of an underdeveloped digestive tract bc so many eventually outgrow it (perhaps as their tract develops?).  Older folks also suffer with the disease which could also point to something amiss in the GI tract.

Anyone have any ideas?

[Ginie]

I have no sun trigger.
Water, sweat, exercise, and maybe conditionner (I think one of them that at least an irritant), seems to be doing it.
Mild allergy to mold, and cats.
I'm going to get tested for latex allergies, and chemical in latex....
If I'm allergic to latex i could have a cross allergy to tropical fruits.

Basically, all I want right now is to be able to wear a bra and excercise. I have big plaques of blisters on my back.

I keep digging my head to try to find the triggers, and then I took the problem from the other hand and though what did I do last time to make it go away. The answer was simple, the biopsies were infected and they put me on antibiotics.
So I put some antibiotic cream on it for 2 days now and it really helps, the blisters are finally healling and not spreading.
Maybe I have some bacterial infection with it that makes it worse.


Thanks for your imputs

Ginie

[kelsarp]

Hello, I just found this site.  I first got Linear IGA when I lost a baby in 1983.  The first episode took 3 or 4 years to calm down to nothing and whenever I get stressed I can feel my throat getting raw and I get a patch just under my breast, it doesn't blister but it lets me know it is there so I try to calm down a bit.  It's the mouth and throat that are the most irritating and wanting to scratch where patch is the next irritating as I work in an office.  I haven't taken any dapsone since 1987.  I was told by one doctor that I shouldn't have any more children (I have one who is now 23)  then when I was 27 I had a doctor who said he had patients taking dapsone and had no problems with pregnancy.  Had a reversal but had no luck, disliked that first doctor for along time - it's always worth it to get a second opinion.  Tried a gluten free diet, really they should give you a thin book on what you can have instead of the thick one on what you can't (got that in 83).  I haven't tried it since as it didn't work at the time.

Just want to thank you for being there.  I've been alone for so long.

kelly

[nicolespeanut]

Welcome Kelly,
I am sorry for your loss many years ago and for the time you have been alone with the disease.  You can see there are a few of us with varying degrees of Linear IgA who are in search of answers and support.  I look forward to hearing more from you.
Fondly,
Nicole

[dehadista]

Hi everybody, I'm so glad i found a forum site like this,  I have LAD also Linear IGA Dermatosis. That's what my Doctor call it. The first time i heard my Doctor said that,  "that's a cool name for a disease" its 7 years now and I still have it. I think I'm having the worst attack right now,. My mouth is full of painful lesions, and my lips as well, they stick together like they glued my lips together with rubgy.

[Ginie]

I'm so sorry about your last attack.  I have linear IgA too but it's mainly on my back.  Did it move around your body or do you get it always at the same place?
Did you find any triggers for it? Food? Do you use any special toothpaste?  How long do your flare up last ?  Mine are a real bad itch for 2-3 days and then it calms down.
I'm keeping a diary of everything I eat, do or wash myself with.  I hope  that  it will help.  On an interesting note, antibiotics, although it doesn't prevent flare up, seems to help my skin heal faster.

[dehadista]

I can't find any medical help here in London, I've been seen in walk in Doctors by the National Health Services (NHS) , waited for 3 hours just to see the doctor, and to my surprise?, she doesn't know nothing about Linear IGA. I've called dermatologist office private clinics and hospitals, they said i have to wait until June to be seen by the Doctor.  When it comes to health services? i hate London.  I will have to endure this until i see a real help.  anyone from Britain wants to help me?

[dehadista]

My Linear just getting worst day by day, Recommend me a doctor pls... here in London.

[Ginie]

Sorry I'm not in London... I'm in New Jersey... I'm not sure that my dermatologist knows what to do... (besides asking for more biopsies).
I read a post that one woman put a picture of her kid's rash under a dermatologist door and she got a call the next day.
It's really hard getting past the secreterial block, but the doctors should be willing to overbook a little to help.
Especially if they might get a publication out of it (look for university professors).

Are you on Dapsone?

It's supposed to help, but I haven't tried it.
Right now, a week and a half after my last flare up, I'm doing okay.  The skin is healing but it's becoming a bit scaly (erythroderma).  The biopsies they took last week got infected even though I was taking oral antibiotics.
I'm mad at them.   This time I asked for stiches (as last time they left gapping holes on my back) and they still didn't get it right. They put one stich that didn't hold anything per hole and now with the infection they removed it.
I'm not letting them touch my back anymore...


Good luck in your quest of a doctor.

Write me if you want to vent and chat...

[dehadista]

This morning, i was so in pain that i insist to that someone accompany me to go straight to the emergency room of the hospital somewhere here in London. I was in pain, and nothing happen, you can't even see a doctor, just the nurse and he talked to us, asking questions. And then he told me that. I have to go to my family GP (General Practitioner) and ask him to book me for an appointment to a Dermatologist.  And that would take a month. or longer. Isn't that ridiculous? I don't what are these doctors in UK are doing anyway. I'll have to see my GP tomorrow and lets see what happens. Maybe, he doesn't know anything about this disease.... 

[Ginie]

You migth want to ask your GP to give you a referal too for an allergist-immunologist.  They migth be a bit faster to see you.

I'm seeing both, and it seems that where the dermatologist is lacking (after trying every cream and ointment possible) the allergist and immunolgist have other idea.  Next time I have a flare up, they might put me on oral stuff (maybe Dapsone, it works on some people).  They are also doing every possible testing under the sun to see If I'm allergic to anything that might make it worse.
I'm keeping a log of what I eat and do and when I have enough data, they might try to suggests dietary restricitons.

Anyway, the more doctors you see the better, the more chances that you find someone that may have a clue...


Also you could try to ask your GP to prescribe you antibiotics... It doesn't stop the flare ups, but I noticed, for me at least, it stops the secondary infections that make my flares keep on going...
If you have it in your mouth, it's so hard to keep it "clean" when you have sores.  It might help... (just be carefull that you're not allergic to the antibiotic).
You can try an antibiotic cream on your lips for the meantime and see if it helps you at all.

I hope your flare goes down quickly,
Good luck,

Ginie