LDN

I had the honor to be a guest blogger for Today's Housewife. Click on the button above to see their great site.

I wrote about the drug I've been researching the last several months, Low Dose Naltrexone. I will hopefully take this drug if I ever get pregnant again to keep my Pemphigoid Gestationis away. Michael and I are still prayfully considering how to go forward with our family. Even as my confidence in this drug grows, so does my peace for having just our two girls. God knows what our family will look like years from now and we just have to trust Him as we wrestle with making this hard decision.

Please take a look at the post and think about telling others that you know with an autoimmune disease about the drug. Even if I never take it, I will always be an advocate for the drug.

LDN Awareness Week

I'm behind on my blogging because my daughter has had a cold, complicated by allergies, the rest of us have gotten it, and the Texas Rangers have been distracting me. Audrey is hopefully getting better, the rest of us are feeling better, and Michael and I going to the Ranger game tomorrow!

What has me blogging tonight is Low Dose Naltrexone, or LDN. I have a rare auto immune disease called Pemphigoid Gestationis. I have a 92% chance of it flaring up if I get pregnant again. Right now, the main treatment is high doses and long term use of Prednisone. Prednisone is as awful as it is wonderful. I was relieved to take it and as relieved to get off of it. I REALLY don't want to take Prednisone in that way ever again...meaning I wasn't going to try for another child.

I recently read about a wonder drug that can regulate your immune system and it has very little and mild side effects (vivid and/or scary dreams). It's called LDN and it is a lower dose of an FDA approved drug, naltrexone, that is used to help heroine addicts. Large doses are safe, so one can assume that small doses are too.

It can help with all of these diseases:

From ldnaware.org

Cancers:

• Bladder Cancer
• Breast Cancer
• Carcinoid
• Colon & Rectal Cancer
• Glioblastoma
• Liver Cancer
• Lung Cancer (Non-Small Cell)
• Lymphocytic Leukemia (chronic)
• Lymphoma (Hodgkin's and Non-Hodgkin's)
• Malignant Melanoma
• Multiple Myeloma
• Neuroblastoma
• Ovarian Cancer
• Pancreatic Cancer
• Prostate Cancer (untreated)
• Renal Cell Carcinoma
• Throat Cancer
• Uterine Cancer

Other Diseases:

• ALS (Lou Gehrig's Disease)
• Alzheimer's Disease
• Ankylosing Spondylitis
• Autism Spectrum Disorders
• Behcet's Disease
• Celiac Disease
• Chronic Fatigue Syndrome
• CREST syndrome
• Crohn's Disease
• Emphysema (COPD)
• Endometriosis
• Fibromyalgia
• HIV/AIDS
• Irritable Bowel Syndrome (IBS)
• Multiple Sclerosis (MS)
• Parkinson's Disease
• Pemphigoid
• Primary Lateral Sclerosis (PLS)
• Psoriasis
• Rheumatoid Arthritis
• Sarcoidosis
• Scleroderma
• Stiff Person Syndrome (SPS)
• Systemic Lupus (SLE)
• Transverse Myelitis
• Ulcerative Colitis
• Wegener's Granulomatosis

Isn't that a long list?! So why haven't you heard about it? It's a cheap drug and pharmaceuticals can't make money off of it and won't fund the proper research in order for the FDA to approve it. Remember, regular Naltrexone is approved by the FDA. Why not take the high dose stuff? This video will explain how LDN works and why only low doses work.

Here are some websites you can do more research with:

www.ldners.org

www.ldnscience.org

www.ldnaware.org

www.lowdosenaltrexone.org

www.ldnnow.co.uk

If you research LDN and believe it's a wonder drug, please spread the word about it. It can help and save so many.

Pemphigoid Gestationis

I'm going to use this post to hopefully help women who think they have or have been diagnosed with Pemphigoid Gestationis (PG). What has helped me the most with this disease is a Yahoo group of women who are dealing with this. I didn't find it from Googling it, so I'm directing you to this group. You have to join to get information. This group offers more support than anything else I've found, including my doctors. It has a forum to ask and answer questions, a copy of the one study that has been done on this disease, pictures, information on how to taper off the meds, and much more. You can leave comments here and I will help you in anyway I can.

This is my story.

Pemphigoid Gestationis is a rare autoimmune disease that pregnant women can get. It mainly occurs around week 21, but I got it 4 days postpartum. The antibodies that protect the placenta become confused and attack your skin. It creates an extremely itchy rash that can form painful blisters. It is treated by steroids - almost always prednisone. Prednisone does wonders, but can cause it's own problems.

I gave birth to a beautiful baby girl and everything about the delivery and hospital stay was perfect. This was my second child and my second c-section. I knew the routine and knew what to expect. I headed home thinking that losing sleep would be my biggest concern. I was healing well, not in much pain, and my baby was such a good baby.

The thing I longed for the most was to clean up in my own shower and feel more like myself than I had in days. As I was scrubbing away some medical tape residue off of my arm, I noticed bumps beginning to appear. I feared I was having an allergic reaction to the tape and immediately stopped scrubbing. Shortly after, I noticed bumps on the other arm and on my inner thigh.

The rash went to my tummy, chest, and back next. A doctor had already ruled out the medical tape reaction, but not before I received an epi shot. You see, I'm allergic to a drug that would be good to use while breastfeeding; the epi shot was the next best thing.

Another doctor thought I was allergic to my pain meds. I got on some more meds to help with the itching and I stopped taking my pain meds. Oh, btw, Benadryl, Zyrtec, and lotions do not come anywhere near to providing relief. The best thing I did was to dip what I could in an oatmeal bath in my sink. (I still couldn't bathe at this time.) When I finished that prescription, I had new blisters. This time they appeared on my hands and feet. Take a moment it consider how hard it is to take care of a newborn when you have blisters on your arms and hands.

I finally went to see a dermatologist. They did a biopsy and it confirmed that I had PG. The doc gave me a steroid lotion to apply to the rash while I awaited the biopsy result. I had to put this lotion on twice a day and not let my baby's skin come into contact with it. It took 40 minutes to apply the lotion. Through a series of crazy events that kept me from communicating with my dermatologist, I finally got a doctor to prescribe me prednisone. Most women start off with 80 mg. I was only given 20 mg because the doctor was nervous - she didn't know me or anything about the disease. This was all God, because the 20 mg worked! I stopped itching right away. My rash began to clear up in the following days. I saw my dermatologist yesterday and I'm on my journey to safely get off the steroid. Below is the only picture I took of my rash.

I'll be happy to answer any questions you may have, no matter how personal or gross. I was a science teacher, so I don't mind at all! This disease was the worst thing I've ever been through and it has altered my life forever. I know that I'm very fortunate that I got it after the delivery of my second child and that I can control it with such a low dose of steroids. I praise God for that!

What a Month! (Introducing Julia!)

This past month will be one I will remember the rest of my life - for good and bad reasons.

It started with the passing of my Uncle Ralph. He died the Saturday before Julia was born. He was married to my aunt for 54 years. He was an amazing man of God and was always there for his family. We celebrated his life the afternoon before we celebrated the new life of Julia on Wednesday morning, March 31st.

Sweet, precious Julia was born on that Wednesday. We went in at 5:30 AM and she arrived at 7:56 (or was it 7:54???) by C-section. She weighed 8 pounds even and was 21 inches long. She had a head full of black hair! She is such a great baby and Audrey loves her! Michael and I are a bit love-struck too. I am recovering well from the C-section and the whole experience was perfect.

Then we brought her home...

On Easter Sunday, I started developing a rash. Long story short, I will officially be diagnosed tomorrow with an autoimmune disease called pemphigoid gestationis. It is super rare and usually strikes while you're pregnant but occasionally strikes a week postpartum. It is an extremely itchy and unrelenting rash that spreads all over your body. My immune system is pretty much attacking my skin. I got blisters that prevented me from holding Julia. Currently, I'm applying a cream to keep it at bay. I also can't touch my kids when I put on this lotion. Hopefully, on Monday, I will receive a steroid that will wipe out this rash. It will be a long road of tapering off the steroid...my goal is 6 months. The steroid will make me gain weight, have a round face, have insomnia, mood changes, damage to my bones, and other lovely stuff. But the women I've spoken to say that they still consider it a miracle drug. If we ever decide to have another child (we had been before this happened), it would most likely strike while I'm pregnant and be more severe. The baby could get it and would most likely be a preemie.

So that's been my month. I wish it could have been an all-pleasant experience, but I take what has been given to me. I love Michael, Audrey, and Julia so much and I'm very grateful for them. I'm thankful for my extended family, my church family, and other friends that have been so kind and generous. And I'm thankful that I'll have doctors taking care of me and trying to get rid of this thing that I developed.