Hi I'm new with Linear IGA Dermatosis

[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