Hi I'm new with Linear IGA Dermatosis

[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