Linear IGA Bullous Dermatosis

[bunnie]

1

[erikaggedert]

very happy for you  thanks to God and your doctor 

[Wooley]

Wow that surgery sounds amazing. I am so glad that it worked for you bunnie!

Wooley

[nicolespeanut]

Bunnie,
I am so sorry for your ordeal but happy to hear you have your vision back.

I too have Linear IgA and have mentioned to the others on this site to make sure you get a yearly eye exam with a good opthamologist who knows about Linear IgA or at least what to look for.  It can wreak havoc in your eyes which you obviously can attest to.

Thanks for sharing your story and reminding others of how it can be in the eye.  My doctor informed me of this about six months after being diagnosed so I have been getting my eyes checked yearly.

Nicole

[bunnie]

1

[LIGA girl]

Hi everyone

I have just been diagnosed with Linear IGA and am taking Dapsone and Prednisone for it. I am female and 50 years old and live in Australia, I did not know that sun can activate the disease - I am very active and love being outdoors (or I used to until recently). With the side effects of these drugs and the disease, I am finding it impossible to live my life normally. My blisters have been all over my legs, though they are better now, and on my back and private parts and in my hair, with a few on my stomach and arms and in my nose and mouth. This first attack has been going for a month now. I have started a gluten free diet and want to know if there is anything else I can try to combat this awful condition or to minimise the side effects of the drugs.

From reading the postings on the board it seems that we get attacks of it from time to time, but does anyone ever get better? This is something I havent been able to find out.  How long is an attack likely to last?  I'd like to hear from others who have LIGA and who have found things that work to control it and how long it is likely to last and just how to live with it generally.
If anyone has any suggestions,Id love to hear from you.....

[Wooley]

Hi LIGA girl   

Welcome to SkinCell!

Wooley

[Daisey]

Hi LIGA girl 

Welcome to SkinCell!

~ D

[Ryan]

Welcome To SkinCell

[totalfolly]

Hiya, LIGA girl, and welcome to SkinCell!

totalfolly

[LIGA girl]

hi Wooley and Totalfolly and Ryan and Daisey

thanks for the welcome and for starting my message as a new thread Wooley. I have spent lots of time looking thru the Skin Cell site for information on LIGA and have found lots of interesting information. This disease is so rare and there does not seem to be a standard treatment for it, that its hard to know what is the right thing to do about it. I am having some bad reactions to the drugs I am taking (dapsone and prednisone) and would love to get off them. the mainstream medical sites have one view, but here I have found other perspectives which I will talk to my dermatologist about. I have had this disease for about 6 weeks now and it has changed my life completely! Reading about other people's experiences makes it easier, especially when I read of people who get better.

Vicki

[Wooley]

Hi Vicki

I am so glad that you are finding the forum useful.

Keep smiling!

 

Wooley

[anthropositor]

Hi Vicki, welcome.
Prior to the prednisone, had your doctor tried any of the milder cortisone creams?  Ever been bothered by thrush or candida in any other form?  Any variety of Herpes or HPV in your history?  What is the dosage of Dapsone?  Is your doctor aware of all the things you use as supplements?  ( Vitamins, minerals, other nutrient additives and so on.)  I presume you do not take PABA.  If you do, tell your doctor right away.  What prompted you to go to a gluten free diet?  Is your condition improving?
Anthropositor

[LIGA girl]

Hi Anthropositor

I was told to go on the diet in case I have Coeliacs - there is a small body of evidence that LIGA responds to this diet if coeliacs exists. I will know the results of my coeliacs test soon, but so far i dont think the diet is making any difference after 2 weeks on it. I dont take PABA or any other supplements. I am taking oral prednisone - 40mg a day and 150mg a day of dapsone which I think are high doses, but I had to take those doses to get an improvement. I also use a cortisone cream, but it doesnt make much difference. My initial crop of sores has cleared, but a second crop is going strong at the moment, though controlled compared to when I was first diagnosed and treated. the only history of herpes has been the occasional cold sore, not very  bad and I dont know what HPV is.

The side effects I am having are weight gain, depression, inability to think clearly and feeling very spacey, especially in the mornings after I take the meds. I've also had fever and weakness. I was very fit till the past few weeks. I have seen that others have had success with other treatments for Linear IGA on this site and am going to ask my Dr about them this week. I fyou have any suggestions, Id love to hear them.

thanks for editing my photo Wooley and for your messages!

Vicki

[anthropositor]

Hi Vicki,
Pending the results of the tests, what can you do to keep your spirits up?  You might find the books by Norman Cousins useful and rewarding.  Humor and laughter are very worthwhile.  Mr. Cousins was very, very sick when he developed his therapeutic ideas.

Have you had long term (oral) antibiotic use, or frequent shorter periods of time (1 or 2 weeks) in which you took (oral) antibiotics?  If so, were you given any input about how to keep damage to your intestinal tract to a minimum?
Anthropositor

[LIGA girl]

Hi Anthropositor

what are the books by Norman Cousins? I need to read something like that....   

I havent had long periods of time on antibiotics, I've only had this disease for a few weeks, and prior to this I only took antibiotics for things like secondary infections from flu, ..... I'm seeing my derm tomorow and have a list of alternative treatments I've found on the web that Im going to ask him about. I have a lot of diffficulty just getting around normally at the moment and suspect it may be side effects from the dapsone.

Thanks for your suggestions

Vicki

[LIGA girl]

This is an update for those who have this disease aand are interested in different treatments that may work....

I have had a change in my treatment as the old one wasnt working well enough and had lots of side effects. Hopefully the new one will work better, but that will take a while to find out. I think I have to go with the mainstream medical treatment for now, as my outbreaks are pretty aggressive. The doctor said it is just a matter of finding what "switches off" the Linear IGA reaction. But both he and his colleague have not previously had a case which didnt respond to the traditional dapsone/prednisone therapy, and the new treatment they have prescribed is one which I found after trawling the web for other treatments when I realised the first one wasnt working. Im now on cyclosporin.

Prior to this outbreak, I was very fit, and taught aerobics, but I generally had a pretty stressful life and outlook on life. I am studying and my 3 children have now grown up. This is forcing me to reassess things.

My skin looks good for my age (50) and people think I am in my 30s on a good day! I dont get many other skin problems and love the sun. I too have been lucky with outbreaks on my face and any which go there stay really small, which makes me wonder if it is the cream I use on my face. I will have a lot of scars on my legs and body, but its getting better that is the most important thing. 

Cheers
Vicki

[nicolespeanut]

Hi Vicki,
I know that we are also communicating via email but I thought I would add something related to the GF diet that you have been trying.  It can take up to a year for it to have any effect on your skin improvement.  It is not something that happens overnight or even over the course of a month.  I know that is very discouraging but often a reason why people with Dermatitis Herpetiformis (blistering skin related to celiac condition) need to take meds as well as GF diet to clear the condition.  You also need to be very sure about every little thing you put into your body as Gluten is in so many foods.  In case you haven't checked it out but there are some great Celiac sites that can help and advise.  I now know that you tested negative for Celiacs but for some it might be helpful to avoid gluten.

I am sorry you feel so badly.  I can remember those early days and all the symptoms you talk about.  I never took meds for it but I do remember feeling many of the symptoms that you talk about.  My first blisters were during what I thought was just a virus.  I didn't even think twice about it since my kids also had weird rashes and their doctor said it was probably the coxsackie virus.  I figured I must have it too however rare it is for adults to get the blisters.  Weird.  After the blisters cleared in my mouth I broke out on my scalp which I thought was stress and the doctors said was a form of dermatitis.  Anyway, when the disease seemed to be at it's worst -- five months after first blisters appeared, I felt awful.  They tested me for everything from celiac to Lupus.  I tried many things as you read since I was determined to get my body healthy.  I wanted to try that first since I was only 30 years old and always healthy and in good shape.  It was crazy.  I did improve by avoiding triggers -- the sun was bad and would give me huge blisters.  I would always wear SPF 40, wear big hats and SPF clothes at the beach and avoid peak sun.  That helped.  I also had to experiment with creams,soaps and shampoos to find ones that worked without irritating my scalp.  Eating better, avoiding sugar and high allergen food helped me feel better.  I also went through a series of detoxifying and supplementing. 

I started to feel better within a few months and by the 6th month I introduced food back and seemed to tolerate everything without any major outbreaks.

I hope this helps.  Please keep the conversation going.  You are not alone.

Fondly,
Nicole

[Val]

Vicki,

Welcome to our SC cyber family.

It's good to see you're already getting some answers to help you.

Looking forward to reading more of your posts all around our boards.

Val

[nicolespeanut]

Bunnie,
I have read some of your posts and appreciate you sharing your story.  I am so sorry for all of your suffering.  Clearly, this disease has a very extreme side of it as evidence in your experience.

I have posted many times on this site trying to communicate my experience and find support and perhaps a common link.

I am still thinking that this is potentially a digestive issue.  I wonder if you have or had any digestive issues in the present or past.  Please share anything and all symptoms.  We may have a common link.  I understand you do not believe that Linear IgA is in anyway linked to gluten and hopefully these questions won't upset you. 

Thanks again for all of your posts and sharing your experience and expertise about this disease.

Fondly,
Nicole