Lupus Advocacy Day

I had the privilege of representing Lupus patients from my home state at Lupus Advocacy Day on Capitol Hill March 1, 2011.

Lupus Advocacy Day

It was interesting to hear about the programs the Lupus Foundation has lobbied for to help Lupus patients. It was even more exciting to meet with the representative and talk to them about how Lupus has affect me and my family. I was surprised by how interested they were. The house of representative that I met with even took time right before having to vote on a continuing resolution to keep the government open. He kept asking question about my story and was horrified by my experiences. He’s eyes grew large when I told him I finally had to travel and pay a doctor out of pocket to get a diagnosis. He was shocked when I told him the doctor spent two days on my case. It took her over six hours just to read through my medical records and try to piece together what happened. That’s why the doctor couldn’t take insurance. No insurance company will reimburse a doctor for that amount of thinking time, but sometimes that’s what it takes. He seemed to understand that Lupus needs better technology to help make a diagnosis.

Please take the time to contact your representatives with your story and why funding for Lupus is so important.

Contact Your Representative

Some of the things the Lupus Foundation is fighting for:

Funding at the NIH

Congressionally Directed Medical Research Program for Lupus

Eliminating Health Disparities in Lupus Initiative from the Office of Minority Health – This is a national health care provider education initiative to improve diagnosis and treatment of Lupus. Aka they are changing the way doctors are taught to diagnose and treat Lupus.

Continued funding for the add campaign, “Could I Have Lupus?” from the Office of Women’s Health. This program promotes public awareness of Lupus.

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!

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.

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

HELLP Syndrome in APS and Lupus

I had never heard of the HELLP syndrome until after having my first baby. My symptoms went into remission and the pregnancy went smoothly. I did go into labor 4 weeks early, but it turned out to be a blessing and probably saved both my life and my baby’s. HELLP stands for Haemolysis, Elevated Liver enzymes, and Low Platelets. The HELLP syndrome is a rare life threating complication of pregnancy. Even though the hallmark sign of the HELLP syndrome is a low platelet count, the HELLP syndrome is actually a clotting problem. Something triggers the clotting cascade and the platelet count drops as multiple clots are formed throughout the body including the liver, which ultimately shreds the red blood cells leading to anemia. The only way to stop HELLP and save the mother’s life is to deliver that baby no matter if the baby is able to survive on its own or not. Patients with APS or Lupus are at a higher risk for developing HELLP. Lovenox and aspirin are given to help prevent the HELLP syndrome in Lupus patients. Even on both medications, I still developed the HELLP syndrome. Usually patients developed pre-eclampsia with elevated blood pressure and protein in the urine before developing the HELLP syndrome. I was an unusual case in that my blood pressure was a perfect 120/80 and I didn’t even have a trace of protein in my urine. It’s important for APS patients to be screened using blood work to catch complications before they go undetected too far.

The HELLP syndrome in the antiphospholipid syndrome: retrospective study of 16 cases in 15 women.

HELLP-like syndrome associated with hepatic necrosis in a patient with systemic lupus erythematosus.

Invalid INR tests in APS patients

Most doctors don’t realize that INR tests may not be accurate in patients with APS or Lupus patients positive for Lupus anticoagulants. It was a nightmare to regulate my INR levels while I was on Coumadin for a DVT. I had to take a fairly large dose of Coumadin to get my INR within therapeutic ranges. Just when everything would seem stable, my INR would drastically spike to a high value. My blood work was like a rollercoaster and I had to have my INR checked weekly. After I was diagnosed with APS, the doctor explained that the antibodies themselves can cause the INR test to read too high or too low. Sometimes the finger stick machines will actually display an error when testing a patient with APS. Looking back, I was probably the patient that was really supratherapeutic (blood was thinned too much) even though the tests showed that I was subtherapeutic. This is another example of how lab tests are not always correct and if doctors are not aware the consequences could be dangerous. Below are some journal articles explaining the INR test issues. Their results showed that the chromogenic factor X and prothrombinproconvertin time assays were the most accurate methods to monitor coagulation in APS patients.

Monitoring Warfarin Therapy in Patients with Lupus Anticoagulants

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Devices

Chilblains Lupus

Chilblains (sometimes called perniosis) are extremely painful sores that appear on the extremities such as fingers, toes, and ears. The red swollen sores usually occur during very cold yet humid conditions. If the sores last for extended periods of time or occur during warm weather, the Chilblains are more than likely caused by a connective tissue disease. Chilblains are most commonly associated with Lupus but are also seen in patients with undifferentiated connective tissue disease and Raynaud’s.

Clinical and histopathologic features and immunologic variables in patients with severe chilblains. A study of the relationship to lupus erythematosus.

Chilblain lupus erythematosus (lupus pernio): clinical review of the Mayo Clinic experience and proposal of diagnostic criteria.

Below are some pictures of my feet with Chilblains sores. It is extremely painful and I wanted to cut my toes off. When the sores start to heal the pain is replaced with intense itching. Not fun. Chilblains Lupus is a rare symptom of Lupus and most Rheumatologist have never seen a case. Three Rheumatologist saw my feet in person and another three saw the pictures. None of them could identify the sores. Trental and Plaquenil are suggested as treatment for Chilblains Lupus in medical journal articles. Prednisone instantly healed my sores and Procardia helped keep them from returning.