Welcome

I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Monday, July 26, 2010

Low Testosterone and DHEA in Lupus

Researchers have discovered that both men and women with autoimmune diseases have low levels of androgenic hormones or the male sex hormones such as testosterone and DHEA. It is believed that people with autoimmune diseases metabolize testosterone too quickly.

“Low levels of sex hormones are seen in one-third of men with an autoimmune disease – and that’s every autoimmune disease across the board, says Dr. Lahita. In the other two-thirds, there are not low levels of androgens, so the cause is unknown,” he says. Testosterone is protective, at least in men, he notes. We also know that women with lupus metabolize testosterone so rapidly that their levels of the male hormone are low to nonexistent. Lack of testosterone appears to be a key in lupus. So why not give testosterone to people with lupus? We tried it, and it really didn’t work, Dr. Lahita says. The FDA recently rejected approval of prasterone (Prestara), a drug based on a weak form of testosterone, for women with lupus.”

Gender Differences In Health Care


Another article from pub med acknowledging low testosterone and DHEA in Lupus, but also saw no real positive results when giving patients testosterone.

“CONCLUSIONS: Testosterone patches were safe but did not significantly affect disease activity, quality of life or sexual functioning. Increased use of steroids in the placebo group may have confounded the study results.”

Testosterone patches in the management of patients with mild/moderate systemic lupus erythematosus.


I did find one article that was positive about testosterone and DHEA replacement in Lupus.

Interestingly, researchers in animals and humans are reporting that testosterone can reduce the body's inflammatory response. There are reports that the inflammatory states of Crohn's disease, rheumatoid arthritis, diabetes vaculitis and now Lupus erythematosis may improve when treated with anabolic steroids (testosterone, DHEA and human growth hormone). This benefits of anabolic steroid therapy are, therefore, not limited only to men. It now seems that for these diseases, testosterone works well for women too.

Edward Litchen


Both my DHEA and testosterone levels were low. My DHEA was below detectable levels. DHEA is available over the counter, but I only took DHEA under doctor’s orders. I first tried 25 mg twice a day and noticed an improvement in mood and general outlook. Then they had me try 100 mg a day. I felt a little better than the 50 mg, but my face became very oily and I developed acne.

Next, I saw an Endocrinologist who specialized in adrenal glands and he said his Addison’s patients (whose bodies can’t make DHEA) do much better with 25 mg of DHEA and 2.5 mg of testosterone in a cream form. So he tried me on the same treatment. I felt the best on the DHEA / testosterone combination and my skin returned to normal. My autoimmune symptoms are adequately controlled by prednisone and Immuran. Even with the prednisone and Imuran, I do have a lingering rash on my knuckles and minor joint pain that will probably never completely go away. The addition of DHEA / testosterone did not improve the rash or joint pain.

I guess I’d have to agree with the researchers that the DHEA / testosterone didn’t have a big impact on my disease course. However, I would disagree with them when they said they saw no benefit. It greatly increased my quality of life by treating my depression without having to take anti-depressants. I think that is huge and worthy of treating the hormone deficiency. While I still have fatigue and the feeling of being weighed down all the time, I do have more energy and stamina. It’s like I’m able to endure the fatigue better and keep going. I used to have to lay down for at least 30 min. a day to make it to the end of the day and now I can keep up with my friends without stopping. I’m still tired at the end of the day, but I feel better since I am able to accomplish more. My husband can tell a dramatic difference in my mood which has made his life better as well. I like to tell people I may still have fatigue and pain, but at least I'm happy about it now!

Monday, March 8, 2010

Glutamine and Lupus Hair Loss

I haven’t been very successful at finding legitimate medical resources about this blog post, but maybe someone else out there has additional information. I recently saw an endocrinologist for adrenal insufficiency from taking steroids over the years. He recommended taking L-Glutamine to help with my weakness since it is supposed to help build muscle. Besides helping with my weakness I noticed my hair drastically changed textures and started rapidly growing even in my thin spots from Lupus. My skin is also very smooth and heals much faster after the inflammation has stopped from the Lupus rashes. The changes in my hair occurred within a week of taking 15 g twice a day. It comes in a powder that you add to your favorite drink. Look for the USP grade. I ran out of the L-Glutamine 5 days before the next order arrived and my hair changed back to being brittle and fragile within a couple days. I’ve tried lots of shampoos over the years to help with the thin hair due to Lupus and nothing seems to help. The L-Glutamine is amazing. My hair dresser was shocked. While not a respected medical journal article, the following link had some good information about L-Glutamine.

Glutamine

It sounds like L-Glutamine could be good at treating autoimmune diseases. However, I couldn’t find anything in pubmed about L-Glutamine being used to treat autoimmune diseases. The closest article I could find was a dermatology article from Cambridge that explained the Glutamine is important and necessary for hair growth.

Metabolism of Freshly Isolated Human Hair Follicles Capable of Hair Elongation: A Glutaminolytic, Aerobic Glycolytic Tissue

Someone should really tell the rheumatologists about L-Glutamine.

Tuesday, January 12, 2010

Use of Imuran or Azathioprine During Pregnancy

Once my body had settled down thanks to Azathioprine (AZA), my husband and I wanted to try to have a baby. I was advised to stop AZA because it is a class D drug that would more than likely cause a birth defect. After 6 months off AZA, I had a flare and had to go back on the drug. I was told it was probably best not to have children since I couldn’t get off AZA.

Heartbroken and not willing to give up our dreams so quickly, I started reading journal articles again so we could make an informed decision. After reading the studies on AZA and pregnancy we decided to try to conceive while I was on AZA and then immediately stop once we found out I was pregnant. Everything did turn out well. We have a perfectly healthy boy and I luckily stayed in remission while pregnant even off AZA. However, four weeks after giving birth I did flare again and had to be put back on AZA. There is no way to know if pregnancy will put a patient in remission or cause a more serious flare. It was a risk that we took and trusted God would protect us. Below are some articles that may help you and your doctor make an informed decision or at least help you ask questions.

A Danish study in 2003 claimed an increase in birth defects in women taking AZA. The study looked at 10 pregnancies.

Azathioprine, mercaptopurine and birth outcome: a population-based cohort study

In 2007, the same authors of the 2003 Danish study published another articles using a larger study population of 76 pregnancies. They still noted increased birth defects in their study, but this time they compared the results to people with the same disease but not taking AZA and concluded that the birth defects were more likely caused by the disease itself and not AZA.


Birth outcome in women treated with azathioprine or mercaptopurine during pregnancy: A Danish nationwide cohort study

This next article states that AZA does cross the placenta, however only the inactive form of AZA crosses the placenta. The fact that the active form of AZA, 6-MP, does not easily cross the placenta protects the fetus from the effects of AZA during the early months of pregnancy because the fetus’s liver is not formed enough to convert AZA into 6-MP.

In utero exposure to immunosuppressive drugs

Three cases of successful pregnancies with healthy babies born to mothers who continued AZA therapy throughout their entire pregnancies. Both the mother’s and baby’s blood were tested for 6-MP after delivery. The mothers were found to be therapeutic and all three babies had undetectable amounts of 6-MP.

Azathioprine use during pregnancy: unexpected intrauterine exposure to metabolites

This article gave us the most confidence in conceiving while on AZA. The above articles were all foreign studies, but the following article was authored by researchers at Mount Sinai in New York. It looked at a much larger group of patients, 155 pregnancies with some exposure to AZA. The study results concluded that the birth defect rate among AZA users was the same as the national average. It also pointed out the reported birth defects were all different. There was not a single consistent birth defect among the babies.

The safety of 6-mercaptopurine for childbearing patients with inflammatory bowel disease: a retrospective cohort study