Hi I'm new with Linear IGA Dermatosis

[tabby]

Hi,
I'm new to this forum - I am excited there is a site like this dedicated to skin issues.

I have Linear IGA Dermatosis (what a mouthful that is!)

I don't see Linear IGA Dermatosis listed anywhere, but it is a rare autoimmune skin blistering condition.  I hope to meet other people here that have this.  I suffer from very painful lesions in the throat and mouth. I've been on prednisone and now am on dapsone, which helps.  I keep wondering about diet and food allergies, esp. wheat and gluten, could they contribute to this?  The blistering can be incredibly painful and this is a really hard illness to live with, I hope I can gain support and advice here, and find other people that have this rare condition.

Tabby

[Gobe]

 

Welcome to Skincell Tabby!

I'm sorry to hear about your condition.  It sounds very painful and must be really difficult to live with.

 

[Fishs]

 

  Hi there Tabby..

 Welcome along to the forum ..

  Hope you will enjoy your stay with us ..

 Yes   not sure if we have members with this form of dermatosis

 Will have a look and see what we can turn up for you ..

 Folk here will be most helpful so hang in there and I am sure  members will respond with some info for  you and plenty of suppot is available ..

   Diet and other allergies could well be adding to your problems so others will follow up I am sure ..

Fish

[GuzziHeroV50]

Welcome to the forum, Tabby.  What you have sounds mighty evil

[Ami]

Hi Welcome to skincell

[lurker]

  Tabby,

  If you suspect you are allergic to something then I would suggest you see your dermatologist or an allergist and get yourself tested.   There are basic ways to do allergy testing - blood test (RAST and patch test.  

  I'm sure others will come along with more advice.  While you're here, take a look around the boards.

  Welcome to SkinCell!  I hope you find this a warm and welcoming place.

  - lurker

[Val]

Tabby,

Welcome to our SkinCell cyber family.

I haven't heard of this type of Dermatosis before either. But don't worry if there isn't anyone else here with it yet as I'm sure someone else with it will find us soon.

In the mean time I'm sure you will find that you will get as much support as you need from our members. We all help and support each other no matter what skin condition we have ourselves, so just join in with us.

I will do a search on your condition tomorrow, but how about you telling us more about it and how it effects you?  We do like to learn as much as we can about these different conditions, and also you will be helping someone else who thinks they may have the same problem as yourself.

I have something called Palmoplantar Pustular Psoriasis, yes another big mouthful like your's.

Looking forward to reading more of your posts and hope you will join in around all the boards.


Val

[kneecapper]

Hi and welcome to the forum. I found the following information on your condition:

http://www.emedicine.com/derm/topic240.htm#target1

http://www.dermnetnz.org/dna.bullous.pemphigoid/liniga.html

The information on these two sites indicates that your condition is drug induced, so I am wondering what other conditions that you might have and what other medications that you are taking.

Maggie

[Monika]

Hi Tabby, nice to meet ya

[Val]

I noticed that too Maggie, but also noted that it can also arrive spontaneously or through lymphoma, haematological conditions, rheumatological conditions, ulcerative colitis and solid tumours.

So I'm also wondering Tabby if your condition just arrived or is connected through one of these other conditions, or a side effect of any medications?

Of course you don't need to answer those question's unless you are comfortable in doing so.

It does look like a very painful condition you have and I hope it's not as bad as some of those photo's shown on those site's Maggie found.

[PaulBeck]

Welcome tabby !  
I haven't heard about your condition, but you'll find much companionship in these boards, and likely some of the 'old timers' have something to say from which you'll benefit.
Later!
K

[peterb]

  Tabby

A warm welcome to the forum.  Plenty of support here. hope you enjoy your stay.  

[Andy50]

Welcome to the forum Tabby

[Nick]

Hi Tabby,

Firstly thanks for joining and welcome

The rarer the disorder, the less the resources available to research.
By you opening up this post you have already started to help find other sufferers, the search engines will pick on this topic and will then feature it when someone searches for the disorder. Plus I have added it to the skincell front page with a link heading straight in to this topic too.
Hopefully others with the condition will search and find the thread, that's how many of the other disorders bring in other sufferers

The condition sounds really uncomfortable to live with.
There's a lot to be said about the link between skin and food. We have members here who have found varying degrees of sucess by modifying their diet, like Monika who is now gluten free because it's a bad trigger for her.
What makes you think that the LIGAD may be linked to wheat or Gluten ? Have you been able to see any improvement or reaction to any change in diet at all ?

Just remember that no matter what, we're here to help in any way we can
All for one and one for all

[scarletgail]

  welcome to skincell tabby

[lurker]

  Tabby,

  As the others are wont to say, you should not feel alone with your skin again as you now have a cyber family to lean on when times are tough, and friends to share news when times are good.


 - lurker

[kneecapper]

  Tabby,

I am happy to know that the links have been so helpful to you. It is interesting that the condition broke out after the birth of your first child. Perhaps there is a hormone link that might be a clue in understanding the condition.

Val has contributed some very useful information about the possible causes of your condition. It seems that there are a few avenues that need research.

From what you are describing I doubt that diet has anything to do with your condition.

Anyway we are here to help and support you during those tough painful episodes  

Maggie

[tabby]

I stumbled onto 2 interesting web sites (hope I am not repeating info you all know):

www.rarediseases.org (NORD)  they have a directory of over 1000 rare diseases

www.aadassociation.org/patientadvocacy.html  (Coaliton for Skin Disorders - they have links to lots of other organizations, even an Infalmmatory Skin Disease Institute.  

[Nick]

Hi there Heidi  

Just remember that SkinCell is all about support and fellowship, not just for the more common conditions like Eczema or Psoriasis but just as importantly for the lesser known and rarer conditions too.

When you registered you instantly became a part of a genuine family of skin disorder sufferers and the forum is now as much yours as it is mine or anybody elses :bughug:
Let's hope that we can increase awareness of LGAD in the process

All for one and one for all

[peterb]

Congrats on your news of having a baby, may you have a good year.  Keep us updated on Baby and Folic Acid.

 

[kneecapper]

that is great news about the folic acid. I think you are on to something here.

Maggie

[Val]

  Tabby,

Congratulations on the news of a new baby.

Good to hear the folic acid seems to be calming the LIGAD.

Sorry I didn't get back to you before about the crohns, I have that condition too, so does another member SweetMom. It's good to hear yours is in remission.

Hope you have a great 2004.

[Shadowmaiden]

Welcome to the forum Tabby!
Looking forward to chatting!

Shadowmaiden

[idil]

hello


I just popped to say congratulations . I hope you and that precious baby inside you have a Terrific 2004

 

[Nick]

Hi there Tabby,

I love to read about good news, and this one certainly qualifies for that

That's a fascinating lead about Folic Acid and I think that your warning about being carefully when changing doses of vits and supplements is absolutely spot on

[kath w]

Hi Tabby,

I'm also a Linear IGA sufferer (referred to as LAD in the UK). Mine started a year ago after taking 3 days of an Amoxycillin antibiotic course. Similarly I was started on steroids until a biopsy result confirmed LAD and was then put on 100mg dapsone daily. I am now on 50 mg daily and have started cutting out 1 day per week but have recently found scalp itching a problem. I used to get most of my blisters on my front, back, neck and scalp. I also get small breakouts of lesions onthe side of my neck - particularly when I'm really stressed - and use dermovate steroid cream to keep these at bay.

I've seen the top European consultant in Oxford who confirmed that really very little is known about Linear IGA and that while dapsone suppresses the symptoms it is by no means a cure. In fact there is apparently no cure as it is an auto-immune disease and will just clear up on its own.

I've tried looking into alternative therapys but as yet found nothing which suggests help. Interestingly found that taking echinacea as an immune system booster my counter-act the effects of dapsone.

You mentioned that you'd tried weaning off dapsone - how did you go about this and what happened ? I'm desperate to get off dapsone as I want another baby but have been advised not to do this until the condition is fully cleared up.

Hope we can keep in touch

Kath

[kath w]

Tabby,

Just posted my first on LAD and then saw your latest news - congratulations on the pregnancy - hope things stay well for you. I may try the folic acid as well.

Kath

[deirdre]

Wow, what great news!

Hope the pregnancy goes smoothly.

It's amazing how well the body heal sitself when it it busy growing a baby... and amazing how kind drs are when they are treating two patients in one.

Th efolic acide thing seems so brilliantlysimple. I tend to have low blood pressure and during my second pregnancy kept fainting. No one really took my faint spells seriously until I collapse dramatically in husband's arms. My doctors advice on how to raise blood pressure without harming baby? Eat salt. She told me to go strait downsiars to teh pharmacy and buy a bag of chips (what you Brits call crisps). I askked her if maybe my chronic bacon cravings wre telling me something (with my first pregnancy I was worried because at one point all i wanted to eat was eggs; doctor said, "right now baby needs lost of cholesterol." So this time around, my doctor laughed and said listen to your body, it seems to know what it needs.

Tabby, you may have had some crazy food cravings that were in factfor thingsrich in folic acid!

I'm so thrilled to see agood news story on SkinCell!

to you and baby!

[Val]

kath w,

Welcome to our SkinCell cyber family.

Sorry to hear you also have Linear IGA  as well.

However it is good to see that Tabby isn't alone here with it now, and I hope you can help each other and also teach the rest of us more about this condition.

Looking forward to reading many more of your posts.



Val

[Val]

Tabby,

Congratulations on your good news.

You didn't tell us when baby is due to arrive though, but I hope you will.

[Fishs]

 

Hi There Tabby  and Kath

Welcome along to the forum

Fish

[kath w]

Hi Tabby,

Thanks for getting in touch - it's great to know someone else who you can chat things through with. It makes me wonder what it is in pregnancy that puts LAD in remission, surely some research should be done on these lines ? I really want another baby - I'll be 37 in February and have 2 boys age 4 1/2 and 3 so don't want to have to wait too long. My consultant doesn't seem to get this though and won't even discuss trying any alternative therapies (homeopathy, herbs etc., ).

However, they are more flexible on their approach to weaning. Basically i cut down to 6 doses per week (say cut out Mondays) for 2 months, then down to 5 doses per week for 2 months then so on until finally only on the 1 x 50mg tablet weekly. Because I'm in a rush I cut out Mondays for 8 weeks, now Fridays (3 weeks so far) for 8 weeks, then I'll do each other reduction for 7 weeks and 6 weeks. Fingers crossed I may be off them by October 2004.

Keep in touch
Kath

[dani_l]

Hi Tabby, welcome, im sure you'll enjoy it here, these people have done a lot for me in a short time, ive only been here a few days but they've certainly made me feel wanted.

[peterb]

Hi Kath, a lot of Psoriasis patients to go into remission when pregnant.

[Shadowmaiden]

Welcome to SkinCell Tabby!

Shadowmaiden

[Nick]

It makes me wonder what it is in pregnancy that puts LAD in remission, surely some research should be done on these lines ?

Hi Kath

Could it be the rampant change sin the hormones that women experience when they are pregnant ?

I've often wondered why pregnant women have such a healthy "glow" about them.

[kath w]

Nick,

It could be the hormones and as PeterB said above Psoriasis suffers also see a remission in pregnancy. Now there's something to surf about - what are the hormones and which are available synthetically ? Guess I'll be busy later !

Kath

[Val]

 Baby is due in late spring.  

Tabby

Thanks for letting us know when baby is due Tabby.

I hope the LAD goes completely into full remission (or goes for good) for you very soon.

[deirdre]

Tabby,

Hpe the pregnancy is smooth sailing.

I don't have what you have, but do have something that can and does affect the mouth: lichen planus, which when in the mouth is called oral lichen planus.

Until it gets really nasty (OLP can become pre-cancerous, so yes it can get nasty and require drastic treatment measures), the strategy is to avoid anything that can irritate the mouth tissues. I believe that the stretegies that I've tried are all safe during pregnancy, but of course you will want to check with your doctor (do you have the MotherRisk program in the UK? It's amazing. If you don't, and really want to get hard data on any drug, including preliminary results from unpublished trials, I have accessed it hroughte Hospital for Sick Children in Toronto. It may be an initiative of Sick Kids, which is an extraordinarily good hospital: the Human Genome Project no longer resides at Johns Hopkins as it was movbed to Sick Kids, I'm not  sure why but that will give you an idea of its international reputation). MotherRisk can give you hard stats and facts on what is  safe through pregnancy and whil ebreast feeding (which are two separate issues: something that does not pass through the placenta may pass into the milk ducts, and vice versa).

My suggestions: use an irritant-free toothpaste such as Biotene. Most toothpastes contain a highly irritating ingredient, sodium lauryl sulphate (SLS), as a sudsing agent. I could not use toothpaste during my second preganancy, thought it was the flavorings (used baking soda which did not make me puke), but had I known that toothpaste contained SLS, to which I have known I am allergic for many years, I would have understood the problem and tried Biotene.

Also, aloe vera gel is extremely soothing and has remarkable healing capabilities. It is one of the best burn treatmenst avialble, for example. I know that not all herbal remedies are safe in pregnancy and so you must check on this, but if you fill an egg cup with food-grade bebittered aloe vera gel, swoosh it around in your mouth for a minute or so, swallow it and refrain from taking food or liquid for a whiel after (to give it a chance to heal), you may find that it offers relief.

I have only had mild OLP flare-ups but found that switching to Biotene made a *huge* difference. When the OLP gets painful I do the aloe gel thing. It is awful tasting , whch may be an issue in pregnancy. I tried aloe vera liquid once, thinking it might tatse better, but if anything it tasted worse and,  because it doesn't cling as effectively, wasn't as soothing.  

You must be getting very excited about the baby!  

[kath w]

Found this and thought it may be of some interest - looks like ther eis ongoing research into auto-immune disorders and why they improve during pregnancy:

A sharp drop in stress hormones after giving birth to a child may predispose some women to develop certain conditions in which the immune system attacks the body's own tissues, according to researchers at the National Institutes of Health.

The study was conducted by researchers at the National Institute of Child Health and Human Development (NICHD) and the National Institute of Arthritis, Musculoskeletal and Kidney Diseases. The study appeared in the October issue of "The Journal of Clinical Endocrinology and Metabolism".

"This finding has important implications for understanding why immune disorders may subside during pregnancy, but flare up again after birth," Duane Alexander, M.D., director of the NICHD. "Understanding the immune processes involved may provide important new therapies for each of these conditions."    

web link : http://www.stopgettingsick.com/Conditions/condition_template.cfm/4242/68/1

Kath

[kneecapper]

Hi Kath,
and welcome to skincell.

Tabby, I just reread your post and I hope all is well with your pregnancy.

Maggie

[SweetMom]

Hi Tabby-welcome to skincell and congrats on being pregnant!I am so glad to hear you are doing better being pregnant-there must be something to this-my god you and Kath-welcome to skincell Kath,just may be making some kind of breakthrough here.
  As Val said I also have severe crohns,my symptoms are many especially due to steriods causing osteoporosis at 35.But as far as my skin its hives from fevers,abcesses,my mouth its thrush,I have had it for years and not known,was finally properly diagnosed and I take oral tablets now.Crohns basically has knocked out my immune system,so I get constant swollen glands,chronic bronchitis,trouble swalowing due to nodules on my thyriod glands.
Pregnancy made my crohns much worse,so I stopped at one daughter.
      Strange though,so many simular problems,and often other diseases involved.I also have neuropothy,even if crohns is not active,its a result of not getting enough nutrition,my feet and legs burn 24 hours a day.
        Kath-have you had any experience with any of these?I am so sorry it took me so long to say this,am in some really terrible pain right now.
          Please both of you keep us updated,and stick around the forum,there most likely will be others who will also come along with the same problem.

[deirdre]

Welcome

[tabby]

I wanted to give an update. After trying increased amts of folic acid, which at first seemed to help, then later didn't seem to do anything.

Thanks for the advice about toothpaste. I read some of that about the irritating ingredients and found Rembrandt makes a toothpaste for canker sore sufferers without SLS. I am using that now, and the insert was interesting, it said you can rub baking soda on canker sores and then swab Milk of Magnesia on them to help healing. They also mentioned a drug Amlexanox to help heal canker sores, never heard of it and I won't try it now but interesting.  

[deirdre]

Tabby,

Great post!

I'm glad you found a brand of toothpaste free of SLS. I will look for Rembrandt in Canada, as the Biotene is so hideously expensive (and I am intrigued by the tips in teh Renbrandt insert). Biotene si formulated for dry mouth caused by certain medications (including drugs for chemotherapy), and the manufacturers are blissfully unaware of its other uses.

I personally know two women with Chron's (maybe more, but only two that have discussed their condition with me). One does have a daughter. the other is childless -- she is, however, maried and has been in her current relationship fora long time, and I have never asked her if she has ever had a miscarriage, but I do know that many women who have prefer to not discuss it.

I wonder if the buiggest problem with Post Partum Depression is its name? I am at the chronological point in my life where most of my friends are in the process of producing families. I sometimes wonder if PPD is not a universal: some women are simply too proud to say, "I am overwhelmed," or, "I can't get over the way I was treated during my labour," or "My inrfant had terrifying medical problems and I am still in shock," or.... well the list goes on.

But, is it depression, or is it simply that the overwhelming surge of protectiveness that hits us at the moment of birth is something that we simply have not been socialized to cope with? Many communities are cutting costs by sending women home within 24 hours of giving birth. Our mothers spent up to two weeks in hospital. They were sheltered from the mundane demands of life possibly through a compassionate understanding of their needs. THose of us who go home to homes without a raft of servants, without even the luxury of a nurse making regular home visits, are perceived as some kind of race of superwomen. We have been raised to be strong and when we need help we have not been taught how to ask. Many of our communities have nothing to offer, even if we do try to ask. Depression carries a stigma and so we and our husbands/partners do not want to even consider that word. We must meet our childrehn's needs, and we try to carry on and in many communities must return to jobs within six weeks or face unemployment, which not all of us can afford.

My own daughter was hospitalized as an infant. Two of my closest friends have children with life-threatening allergies. I see them choosing a self-imposed isoltaion for the sake of their children. Neither lives in my city and so I cannot ambush them with offers of practical help. I have one fiend who is childless (not by choice) and she was very down just before Christmas and I got a little worried so I dropped by her house with a gift -- a book I knew she would enjoy -- and told her I could not stay but to call me if she needed anything at all. She has a wonderful and supportive and very protective husband, but she cannot work full time due to a disability and so she spends many hours alone every day.

Pregnancy did affect my body chemistry... but women have borne children for as long as there have been people. Why is it now that PPD becomes an issue? Is it possible that post partum women are left too much on their own, with husbands working long hours and relatives not wanting to "interfere" (my mother-in-law took offence when I declined an invitation to a dinner party less than 72 hours after my son was born. I had to ask my mother to explain to her that the baby *only* seemed to sleep reliably between 5 and 8 pm, and that I must sle4ep then as well... and my mum went the extra step of reminding my husband's mother that when their baby's were that young they were still getting trays of food wheeled to them in the hospital. I got off, but my mother-in-law saw no reason why she couoldn't pop over with friends on no notice, so I spent my days keeping laundry and dishes under control and trying to figure out how to bathe a slippery baby and hoping that some day I might catch up on my sleep. A friend whose sister has many children came over, and said, "Here are some homemade cookies as I know you are getting more guests than you can handle. If you'd be comfortable I'd be happy to cuddle the baby while you grab a quick shower. Your house looks great and the baby is beautiful," and she may have done a quick dusting while I washed my hair. I had to wonder... why wasn't I able to get more support like this? But one cannot ask.

[nicolespeanut]

Hi! I too have Linear IgA and have decided against the meds at this point (I have had it for over a year) and really think that there is a diet connection.  I am very curious about the Folic Acid.   I am also at the point where I think this is diet related as it is so similar to Dermatitis Herpetiformis which is gluten induced.  Any thoughts?  Nicole

[Andy123]

  Nicole sorry I cant help you with your problem, Im a    person, so I just wanted to say welcome, and Im sure you will find all the help you need hear.

Take care Andy.

[nicolespeanut]

Thanks for the welcome Andy!

Have you found any diet relationship with your psoriasis?  My brother suffers with this as well.  His son has food allergies and eczema.  I guess we have a lot of skin issues in our family now that I think about it.  Nicole

[kath w]

Hi Nicole and welcome. It's very brave of you to manage the Linear IGA without medication although the meds don't cure it they really do a great job supressing the blisters. I take dapsone and within 48 hours of the first tablet I was blister free. I'm now down to 50mg 4 times a week. The research I've read over the last year seems to indicate that although very similar to DH there is no link with gluten or any other dietary factor - but then again - no-one knows what the trigger is. I know I get small outbreaks when I'm very stressed although they don't blister any more - just small raised spots that are managed with topical steroid (dermovate).

My consultant in the UK is insistant that the disease has it's own pre-setermined time and will burn itself out - I only wish there was some more knowledge or research on alternative therapies or triggers to help us who suffer put an end to the disease more quickly.

Good luck with the dietary research and keep us posted if you find anything which helps.

Kath

[nicolespeanut]

I came down with a bug this weekend and was sick for two days not eating only drinking liquids and didn't take my thyroid meds (couldn't keep anything down) and by the third day I noticed I hadn't gotten a new blisters.  So I am really watching my food intake and keeping a log -- mostly simply raw foods.  On day four, no new blisters.  Am I on to something?  I still have not taking my levoxyl either just bc I have always wondered about it knowing LAD can be drug induced though my drs felt this was not the issue with levoxyl.  My thoughts -- who knows?  Nobody knows enough about it.  It is certainly  worth a shot.  The bug seemed to have shocked my system and given me a little hope that perhaps it is something I am ingesting.  

I did read that IgA is "a type of antibody whose main function is to fight ingested antigens.  It is found in body secretions such as saliva (explains mouth ulcers), sweat (often areas erupt at sweat glands) and tears (there are many occular manifestations of the disease).  IgA "prevents attachment of viruses and bacteria to skin and intestinal lining surfaces."  

Nicole

[Hvns]

  Hi Tabby just wanted to say welcome to skincell, I'm new here as well  

Sincerely
Hvnsangels03

[rdafan_03]

Hello,

I, too, have Linear IgA Bullous Dermatosis.  I've had it for... 12+ years.  I know... that's along time.  I'm on the top of the list of about 170 people in North America that have this disease.  There was a lady ahead of me, but she passed on due to other complications.  Now I've been given this dubious title. Yea me!

I've been on prednisone and dapsone for all 12 years.  Started out on 80mg of prednisone and 100mg of Dapsone.  I'm now down to 10mg of prednisone and 50mg of Dapsone.  I also took Immuran for a couple of years, but the high risk of cancer was too great and couldn't stay on it for long.  I've just started to take a new drug... and boy is it expensive!  CellCept.  It's used on organ transplant patients... an anti-rejection drug.  If this works, I'll be able to get off Prednisone.

Side effects of prednisone is awful.  I have oesteoporosis (spelling?), I've had numerous bouts with pnemonia (again, spelling?) and Viral Myocarditis.  The latter almost killed me.  I've developed chronic sinusitus and allergies.  I'm allergic to my dog, house dust, mold, ragweed, grass and trees... and I own a golf course... go figure!

But I'm here to tell you to hang in there.  This disease has robbed me of a lot of things.  I had a daughter in 1986, and a miscarriage in 1990.  This disease was the root cause of the miscarriage.  The disease can lay dormant in your system for up to 2-3 years before it rears it's devastating head.  I was not unable to get pregnant after that due to the side effects of the medicines.

My doctor, Dr. Mark Bechtel, the best dermatoligist in Ohio sends all my 'stuff' out to Utah to a Dr. John Zone, who specializes in this very rare disease.  The stats I was given at the beginning of my disease were something like this.  Adults: 1 out of 280,000 will contract this disease.  Out of those only a handful... me... would have it for the rest of their lives.  It can go dormant, but it's still there and a virus can set it off again.  I'm not in remission yet.  Hopefully the CellCept will help me there.

Please, if anyone would like to talk... feel free to e-mail me.

Take care


Lorie Wylie

[rdafan_03]

Thanks, Tabby... It all started one weekend.  I had a stomache flu, twenty four hour variety... The next morning I woke up with two 'scabs' one on top of each foot.  Thought maybe it was a bug bite... The next morning those 'scabs' spread over my legs... about 8 on each leg.  I called my family doc and went in.  By the time I got there the 'scabs' were all over my body.  About 150 to 200 spread every where but my face.

They thought I had an Adult form of chicken pox.  They gave me a Prednisone pack and told me that would take care of it.  It did... but when I was finished  three days later, everywhere those 'scabs' were they turned into liquid blisters.  I was misarable.  I went back to the doctors and he freaked on me.  He put me in his office and then proceded to call in the other doctors to confer with them.  He looked like he was about to cry.

They sent me to the Dermatologists on an emergency call.  My husband had to leave his teaching job to take me.  When we got there, they took me in the back way.  The didn't know what I had and feared it could be contagious.  All the dermatologists in the building came to look at me.  They took biopsies and then put me in isolation at the hospital.  THAT was fun... not!

It took them 6 months to diagnose me.  I spent 10 days in isolation when they finally decided what I had couldn't be contagious, since my dau. and hubby hadn't come down with anything.

I was put on 80mg of prednisone and that was it.  I didn't start on Dapsone until it was confirmed I had IgA.

I've had sores EVERYWHERE!  The worst were in the vagina... they had to numb me with meds.  I had to wear diapers for two freakin' weeks.

I've had Orbital Cellulitus, Staph and Strep infections in my skin.  That lands me in the hospital all the time... still.

I gained 70lbs on the prednisone in 3 months.  I've tried the gluten free diet for 6 months... no changes.  Nothing has worked other than keeping things under control with prednisone and dapsone.  I went on the Atkins diet and lost 40lbs.  I'm still on it and loving it.  It's truly a life change.

I'm still breaking out, although not with the intensity as I did earlier.  It's playing itself out... sort of.  I'll live with this disease for the rest of my life.  It will always be there.

As for my 'cheery' disposition... I learned a long time ago not to worry, get depressed and all that about things you can't control.  My body is allergic to itself.  I can't help that... I've have a wonderful, and understanding hubby... thank God! and a beautiful daughter who are my support base.  Also I come from a very large family.  I have one sister, two brothers and 4 first cousins I grew up with (all boys).
They have been wonderful.

Hope this helps you to understand what it's like to have this disease.  I just live with it.

Lorie

[Gobe]

 :hi:Lorie

Thank you for sharing your story with us.  

I am moved by your acceptance of such a debilitating disease.  

 

[cross4u]

Tabby,

I do not have LIGAD, but my mother-in-law does.  She started with it a year ago this may.  They believe it was caused by medications that she was currently on.  You asked about diet, well the doctors have her on a gluten free diet.  Not really sure if it is helping or not.  Currenlty she is in the hospital but when she gets out I am going to inform her about this site and maybe the two of you could help each other.

I will be keeping you in my prayers as I know how horribly difficulty this is to live with.  

 :hugs:

cross4u

[kath w]

Hi Lorie, Tabby

Lorie - You've really been through a lot and I admire your positive outlook, I don't know if I could be so cheery after 12 years, but as you say - you learn to live with this disease. I heard that IGA can be up to 15 years but never heard of anyone having it for that long before.

Tabby - Hows the bump doing ? You must be getting bigger by now (can't remember your due date). I've been off-line for a while - busy with work and just about to take a week off as my eldest starts primary school on Wednesday. Doesn't seem 2 minutes since he was a tiny baby and now I'm getting organised for his 5th birthday party.

My IGA has been a little bit up since I last posted. I dropped another tablet last weekend so now only taking 50mg dapsone on Tuesdays, Thursdays and Saturdays. We had some nice weather here in the UK over Easter and I spent a couple of hours gardening - that brought out outbreak of lesions on the back of my neck. This happened last summer as well and is apparently common for IGA sufferers - any one else affected by the sun ? Sun block doesn't seem to help and I can't see myself staying covered up all summer.

Keep smiling
Kath

[Nick]

This really is a devastating disorder, as we have already read in this thread.

I think ALL IGA sufferers deserve an extra special for facing up to such a soul-destroying condition and fighting it as you all do

[nicolespeanut]

Kath,
My blisters are triggered by the sun as well.  Recently I discovered a study about adding Linear IgA to the list of disorders triggered or aggravated by the sun.  I do not take meds for the disorder as I am trying everything to control it without drugs.

Keep in touch.

Nicole  

[kath w]

Hi Nicole,

It's not fun is it - especially if your a sun lover like me ! For years I've suffered from itchy, raised spots when I'm in the sun but it's only since I was diagnosed with Linear IGA that I found a name for it. That is Polymorphic Light Eruption, apparently very common and can be treated by light sensitisation (free sunbeds !). The commonest variety is crops of 2-5 mm pink or red raised spots occurring on the arms. Other areas may be involved, particularly the chest and lower legs.

I've had this since I was 17 (now 37 !) and it's never caused me any real problems - just had to make sure I didn't get exposed to hot sun too quickly (or burn). Now with the IGA it just makes me worse. The outbreaks I get with the IGA and sunlight are right on the back of my neck, and after I've picked at them they leave a scab for a good couple of weeks. Had to resort to cutting all my nails off to stop picking !

I'm hoping that once the IGA is cleared up (forever optimistic) that the sun sensitivty part will also get better. Although the IGA is also triggered by stress so there will always be that element to contend with.

Strangley enough I never had problems with my skin in the 2 years I spent backpacking (1992 - 1994) possibly because I was slowly acclimatised to the tropics and the humidity in Asia was better for me than the dry heat we get in Europe.

My consultant in the UK is not open to any discussion on alternative therapies and I can find very little on the web. If you have any information I'd love to hear about it.

Kath

[nicolespeanut]

Kath,
When you first experienced the blisters it was while on Amoxicillin?  Funny as I have had strep throat this last week and my blisters flared and I assumed it was either the antibiotic or stress on the immune system -- though I continued to take it for the strep.  I actually had some in my mouth which I hadn't had since the disease first showed itself Dec of 2002.  I am waiting to talk to my dr about this bc my daughters now have strep and they just started their treatment yesterday, the day I finished.  Worried about becoming reinfected and having to do a full 10 day treatment.  

As far as alternative treatments, I have only been researching things recently.  I do make sure I work out everyday, drink plenty of water, eat well, etc.  I also take enzymes which have been so great with digestion and as a result -- my skin has improved.  I continue to believe that there is a connection between diet and my blisters.  I am experimenting with things but haven't eliminated anything yet.  I stopped taking Levoxyl for hypothryoid condition just to test if it was bothering it.  I do believe my skin has improved since I stopped the meds.  With the change of season, we have been sick with colds, viruses and now strep in my house making things stressful and certainly stressing my immune system.  I am also taking a good multivitamin and mineral supplement and probiotics.  

It is funny that I feel so confident that my body will beat this thing if given the opportunity to heal.  I have spent the last six years pregnant or nursing not giving my body much TLC.  As a result of my children being a bit older and no longer nursing, I am sleeping better and concentrating on healing.  I have already seen such an improvement in my skin over the last month (with the exception of the last 10 days!) that I feel very hopeful.

I wonder about hormones playing a role in all of this as well as diet.  I have found hope with supplements and will continue to research and experiment.  

Nicole  

[nicolespeanut]

Tabby, Kath, and Lorrie,
Tabby -so sorry that you have had outbreaks with the pregnancy.  I did have to increase my dose of Levoxyl for hypothyroid when pregnant with my daughter but not my son.  I was thinking of you this last week as I had an outbreak in mouth due to Strep or the antibiotic I was taking.   I have only had a few in the mouth over the last year and of course, the mouth was my first outbreak.  I did not suffer as you do -- my blisters just sprout and break pretty quickly leaving a raw spot that doesn't hurt.  I am sorry for your suffering as I did just have a painful bout with strep throat which thankfully cleared with the antibiotic.  It is curious how some can get such a bad case, or only in the mouth, or only in certain areas, and some only from drug reaction which disappear once the offending drug is removed, or different triggers such as the sun or physical stress.

I am hopeful that things will change for me now that I am off the antibiotic and the levoxyl for hypothyroid (even though my dr is doubtful she said it was worth a shot and to keep a journal).

I too have lots of moles and freckles and have to be very careful in the sun even before the Linear IgA.  

I am curious to know if people have particular spots where they break out.  I know Tabby suffers with her mouth and throat.  I tend to get them in my scalp, upper back (usually where the tag of my shirt rubs), neck, face and sometimes on the chest, upper arm shoulders. I have had break outs from bikini wax and often stress from shaving under my arms.  Since I have stopped my levoxyl, all of these areas have improved so much!  But perhaps it is the enzymes.  Or maybe the disease is just running its course.  I noticed that many of what would be blisters often appear now as just  red itchy bumps.  This seems to be what people have described as the Dapsone helping.  
  
Fondly,
Nicole

[nicolespeanut]

Hi guys,
I thought I'd give an update on how things are going.  After going off the antibiotic, my daughters both came down with the Strep but so far I have not been reinfected.  I am glad to be off the Amoxicillin as my skin has cleared completely and all the blisters are just about healed from the outbreak.  I unfortunately caught yet another stomach bug, my baby had it first and inevitably I got it as I was caring and cuddling him through it.  Well, I'll tell you, this is the second bug I have had over the last two months (though this not quite as purging as the last) but each time my skin is so clear after.  I did take acetaminophen for the fever and aches.  Yesterday, I had two blisters in my mouth, right where the gum meets the cheek.  I wonder if it is the bug or the tylenol.  I don't know.  I posted about it on the main board but nobody responded.  Anyway, I am hopeful as my skin is so clear with the exception of the two areas in my mouth, hopefully that will be short lived.  Wondering how you all are doing.

Take care,
Nicole  

[rdafan_03]

Hello,

I'd be more than happy to talk to her.  This disease is no fun... alone.  I tried the gluten free diet... didn't show any difference.  I gave it three months.  I was not on any kind of medication when I came down with this.  Just showed up one weekend.
They told me 'it', what ever 'it' is... could've been dormant in my body for up to two years.  I got a virus... my infected immune system thought it was one virus so it fought it... turned out to be something different.  That's when I got really sick.

Hope your mother-in-law gets better... tell her to hang in there.

Lorie

[kath w]

Hi all,

Reading all your updates from last week really shows a pattern for the LIGAD, with meds seemingly responsible for most.

Mine was after 3 days of Amoxycillin and started just as itching, then rash and within 48 hours blisters.

Now my outbreaks are restricted to the left side of my neck, then with more stress or direct sun-heat, the right side of my neck and the back of neck (again where a Tshirt label would be). I've had one blister on my chest - the bit the TShirt didn't cover !

Tabby - interesting to see your comment that dapsone increases sensitivity to sunlight - I hadn't read this before but makes sense now that I burn up more easily than I did previously.

Kath

[nicolespeanut]

Medicine appears to trigger blisters in the disease -- seems to me that everything aggravates my skin -- amoxicillin, tylenol, motrin, thyroid meds.  Although I guess it could be the reasons I would be taking the meds in the first place that could aggravate my skin.  So many variables.   Nicole

[Awnya]

Hi All,

I too have Linear IgA.  It first appeared in January 04 on the right side of my body, my dr. thought it was Urticaria (hives) and put me on antihistamines.  But after three weeks it had gotten worse and had spread all over my body, except my face, hands and lower legs.  It started like hives, then spread into, what they call 'roses' and then they blistered.  V.Unpleasant. I was then referred to a dermatologist who put me on steroids until the results of a biopsy were known.  Finally, in April I was put on 25mg of Dapsone daily, and what a relief that was.  The blisters started to clear up and the itching stopped.  I noticed that some of you had problems with the sun, but I was on holiday last week, and didn't have any problems with the sun, which is great.  

I have no idea what triggered this disease off.  I wasn't on any antibiotics before it started and I don't have any children.  It's great to read other people's stories, as I believe this is a rare condition and very little is known about it.

Awnya

[Gobe]

 

Welcome to Skincell Awnya!

 

[Awnya]

Thanks Tabby,

I think it might be trend that we are all female, maybe something to do with our hormones.  I had read somewhere before about the Dapsone being sun sensitive and do watch myself with the sun.  I think everyone needs to, nowadays.

Best of luck with your pregnancy, not long now.

Awnya

[nicolespeanut]

Hello ladies and welcome Awnya!

Great news Tabby that you are Dapsone free and clear skin!  Hope the pg is going well

I have been out in the sun the last few days and I have quite a few blisters on my face -- most are tiny but I did have two big ones on my forehead last week.  Had some on my ears -- lobe and inside.  I am always careful with sunblock and hats -- maybe it is the heat and not the sun.

Does anybody suffer from allergies -- food, environmental or chemical?  Irritable bowel syndrome?  Sensitive to caffeine?  Once again, searching for an external antigen to explain this crazy disease.

Take care,
Nicole  

[MarieC]

just want to say welcome awnya

[kath w]

Tabby,

Congratulations on your new arrival - I was just thinking about you a few days ago and wondering how long it was to your due date. Hopefully the post-pregnancy hormones will keep the IGA at bay.

It really is an inspiration that you have been through a pregnancy and managed the IGA - it gives me some hope that if mine has not fully cleared I can do the same.

I had a flare-up when the English sun started hotting up - all at the back of my neck where a Tshirt doesn't cover. I'm using a factor 60 sunblock with maximum UVA block as well but it seems to make little difference.

This is my last day on my ntl.com email as I change jobs next week. As soon as I have new email I'll update my profile so we can keep in touch.

Take care of yourself and all the family.

Kath

[nicolespeanut]

Hi Ladies,
Tabby congratulations on your baby girl!  Such great news!  Great to know that your IgA let you enjoy your last 6 weeks of pg and is not too bad now.   Hope you can continue to stay of the meds.  

Kath - my skin has been flaring too with the sun in spite of the sunblock.  Sometimes I wonder if it is heat related too bc I will get random blisters where my shirt covers (UV block shirt, too)

I have been avoiding milk and gluten again - though I have had some mess ups.  I have also been doing a liver cleanse/ intestinal support drink for the last five days twice a day while eating much healthier and continuing to exercise daily.  I am feeling good but my skin has still been blotchy in spots so I eliminated soy yestereday to see if that helps.  The more I read about intolerances the more I am convinced that they play a role in this disease (and many others!).   Hopefully I can stick to the gf/ cf diet.  It is so hard but now I have more info and feel very positive about it.  I have read that it can take as long as a year before the skin improves which is discouraging but many people find relief after three months.  

I'll keep you all posted.

Nicole

[nicolespeanut]

Hi All,
Wanted to give an update on my diet and skin response.  Since I cut the soy in addition to the gluten and dairy my skin has really been behaving.  I am so positive about the diet, I feel so much better and my skin which I never thought would respond so quickly ( I have read it can take up to a year for positive results!)looks great.  So, I am still doing the liver detox drink, eating veggies, fruits, nuts, and gf/df/soy free meals.  I am also continuing to take enzymes, and Flax and Borage oil in my detox drink.  My face is so smooth.  I do still get blisters -- which are mostly on my face and remain very small.  As the days pass, they seem to be fewer and fewer between -- today I had only one tiny one.  The only thing I put on my face is Jason Aloe cream and Jason sunblock during the day -- I have also used Waterbabies but that might be why I am still getting some in spots.  I am really hopeful and positive.  I don't know what is actually helping as there are so many things I am doing.  I know some have tried gf with no success but how about gf and casein free as the makeup of the two are so similar it can trick the immune system from what I have read.  Keep in mind I do not have any food allergies.  Hope this info helps or gives some hope.  I'll keep you posted.  Take care,
Nicole

[Awnya]

Hello All,

Congrats on the birth of your baby girl, Tabby.  That's great news, and I'm so glad to hear your Linear IgA is staying under control.  I don't suffer too badly now from blisters, I do get some in my mouth when I eat, but they are only minor.  I'm on a very low dosage of Dapsone (25 mg/day) and my dr. says she will try to reduce the dose over time.  But recently I forgot to take my tablet and within ten hours a number of blisters had broken out all over my body and on my face.  So, I don't think I'll be forgetting my tablet again in a hurry.

Hope all is well with everyone.

Awnya

[nicolespeanut]

Hi All,
Things are going well with the diet as my blisters are pretty much gone.  I did have soy the other night by accident and the next morning I had a blister above my eye (very small) and one on my neck.  Is it related? I don't know.  My skin has healed significantly since dropping gluten, dairy and soy.  The diet is getting easier and I have baked some yummy treats so I am really feeling like I can continue happily.  I never would have thought that my skin would respond so quickly to the change of diet (and maybe it is not the diet at all) and will continue to keep you posted.  

Take care,
Nicole

[Nick]

Hiya Nicole,

That's great news about the "medicine free/gluten free/ dairy free/ soy free  blister free"
Hopefully the soy you had the other night won't affect you too greatly (fingers crossed for "not at all")


Hi Awnya,

I'm reallysorry to hear about the flare up after missing the tablets I hope that it gets back under control again really quickly

[Suz]

 Hi Tabby!
I also have Linear IGA Bullous Dermatosis. And you're right - it is a mouthful! It took me a long time to remember the name. I hope others like us can help each other out with ideas on how to help control this disease. It sounds like I should look into info about the "gluten-free" diet so many of you are talking about.
Tabby-congratulations on your baby!
Suz

[nicolespeanut]

Hi All,
My skin is getting better as I am still free of soy/gluten and dairy.  I have found soy to be in a few things that I have thought were safe so I am hoping that once these foods are eliminated even the random tiny blisters will disappear too.  

I have been in the sun quite a bit lately, always using sunscreen and for the first time since I first had an outbreak (first major outbreak as a result of UV exposure ) I have not had any sun related blisters.  I am careful not to be out during the 10 - 2 and still wear a uv shirt when in the water but usually I would break out in blisters on my face or  neck or chest even with precaution.  

I am hopeful as the diet makes the most sense to me of everything I have read regardless of what drs think.  Time will tell.   I think it takes at least 8 weeks to go through a skin shedding cycle so I didn't expect to see such great results so soon and am very hopeful.  
Take care,
Nicole  

[nicolespeanut]

Tabby,
How are you doing?  I noticed that you posted under Suz and sounded like your blisters flared again.  
Nicole

[Suz]

  Morning all!!!!!

Hope everyone is having a beautiful day!!!
Tabby, Nicole, Awnya---have any of you found that stress causes you to have an outbreak?
I've noticed that when I'm having a particularly stressful day either at home or work-I start to itch-and eventually do have an outbreak. Not as bad as the outbreaks from the sun-but enough to notice.
I would really like to try the gluten-free diet. I agree-food has a lot to do with a lot of the skin problems people have. Diet affects so many people in so many different ways. And with all the additives (especially the one's we don't know about) who knows what our food is doing to us!?!?!?
Take care everyone--have a wonderfuld day!!!
talk to you all soon!!
Suz

[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