LUPUS, in a nutshell

Every disease, everything that ails us, usually has a descriptor, a very easy way of describing it. and here is a lupus descriptor that is a very basic. Future articles will expound on this video:

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Lupus and Sjogren’s Syndrome and IVig

My doctor called, “We’ve found out why you have such problems with your balance, walking and weird sensations in your legs. ”

She proposed treating me with either high-dose IV steroids or immunoglobulins because the inflammation and viral activity in my blood was so great. She chose IVig instead of steroids, because steroids would suppress my immune system enough, so that fighting infection would be a problem.

The immunoglobulins would be given to me through an intravenous line. Having learned about immunoglobulins years ago in nursing school, there was no time like the present for a brusher upper! Briefly put, immunoglobulins are proteins found in the blood that are used to fight viruses and bacteria.

Because immunoglobulins are heavy, they require much volume for infusion. Because my doctor needed to know if I could tolerate the volume for the infusion, a right heart catheterization was to be done. In this procedure, a catheter would be placed in my neck, threaded through the heart and lungs and measurements taken in various places of the heart and lungs to help determine if I would be able to tolerate the volume of the immunoglobulins.

So, should steroids be used to treat the lupus and its massive inflammation or immunoglobulins to treat the antibody deficiency? I opted for, and the doctors felt the latter stood a better chance of being effective against the known culprit of Sjogren’s Syndrome. Stay tuned to this channel for the effectiveness of IVig.











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What is Pulmonary Hypertension?

We’ve talked about some ways in which lupus can affect the heart: its inflammation can cause pericarditis; a painful inflammation of the lining around the heart, lupus patients are at an increased risk for development of Coronary Artery Disease, dyslipidema and many other heart-related problems.

Pulmonary Hypertension is not to be confused with high blood pressure, the systemic type in which your doctor measures your blood pressure with a cuff around your arm. For the purposes of this discussion, we speak of PULMONARY hypertension, or HIGH BLOOD PRESSURE IN THE LUNGS and treatment for it involves sophisticated treatment by subspecialists- after a through diagnostic workup. The World Health Organization has chosen to classify 5 types of Pulmonary Hypertension into Groups:

Group 1. Pulmonary Arterial Hypertension-the Pulmonary Artery becomes narrowed, so the pressure inside this artery becomes high.

Group 2. Pulmonary Hypertension due to left heart disease. This is often seen when stiff LEFT-SIDED HEART vessels don’t completely relax. A good example might be one which is caused by left ventricular diastolic dysfunction.

Group 3. Pulmonary Hypertension due to lung disease- the diseases here include COPD, mainly empyhsema and chronic bronchitis, as well as any disease that leads to scarring of the lungs, like pulmonary fibrosis and sleep-disordered breathing. In this instance (sleep-disordered breathing) CPAP for Obstructive Sleep Apnea is necessary.

Group 4. Pulmonary Hypertension due to blood clots in the lungs: this is sometimes called Chronic Thromboembolic Pulmonary Hypertension and in it, (blood clots) form within the lungs causing pulmonary hypertension by blocking the flow of blood through the pulmonary arteries., not only raising the blood pressure in the pulmonary artery, but since blood flow is blocked, more clots form.

Group 5. blood and other rare disorders that result in Pulmonary Hypertension-or Chronic Thromboembolic Pulmonary Hypertension. For an unknown reason, blood clots form in the lungs and in addidtion to the formation of clots which create more clots, these clots increase the pressure inside the pulmonary arteries.

The diagnosis of Pulmonary Hyptertension is often one made during a work-up of shortness of breath. Shortness of breath can have multiple causes and unless diagnosed and treated by subspecialists early, the shortness of breath of Pulmonary Hypertension  can have a poor outcome.

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The unknown

Surgery to replace my hip was called off. Was it because I was chicken? No. I was advised against surgery at the time because of a risk to my lungs and heart. Does that mean that I am forever at high risk for any surgery?

High risk. I don’t like the sound. You mean, one of these times, I might not ‘wake up?’ Now, there’s a humbling thought and a reason to examine my own mortality. I have Shrinking Lung Syndrome (sometimes known as Vanishing Lung Syndrome) from lupus or from Sjogren’s Syndrome (it is a rare pulmonary effect of either) and I experience severe shortness of breath with next to no exertion. However, upon measuring my oxygen saturation at the time, the result is usually normal, @ 98%-99%.

That’s why supplemental oxygen didn’t help. However, that was the past and I just wonder about the present.  A recent sleep study monitored oxygen all night long. We’ve tried inhalers: So far, none have worked.  So the next step/treatment.

The shortness of breath is now much more involved as it takes on a life of it’s own. Walking is limited to 10-20 yards before it becomes so severe that I need to rest. The shortness and breath, along with weakness, makes it next to impossible to walk without use of a cane.  My balance, issues are getting worse everyday. Hardly the way I wanted to spend the ‘golden years!’

Having not much more than time on my hands, I write here or at my other blog, annies analysis, frequently. My rheumatologist has prescribed several medications, and a diary of my journey with these can be found in TREATMENT CHRONICLES. Come, join me on my journey!

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Lupus and Asbestos

Landon Biehl

Have you been exposed to asbestos? Complications that result from exposure to hazardous materials in the environment are often times hard to identify and track down. We come into contact with a large number of potential health threats everyday, making our ability to identify exactly what causes our complications or health issues not easily identifiable.

Lupus has quite an effect on the lungs and can mimic other lung diseases, such as mesothelioma, making the differences in the health threat closely related in nature. A large percentage of lupus patients develop pulmonary issues, and different lung complications and diaphragm issues. Similarly, asbestos exposed victims can develop some of the same complications.

A very common trigger for lung complications is asbestos. Since the risk of exposure to asbestos is common, and tracking down its initial place of contact is nearly impossible, many times individuals believe they have been exposed when they really have not come into contact with asbestos.  However, if there has been exposure, medical treatment should be sought out immediately.

Often times, when experiencing lung complications, many people seek treatment for asbestos. However, after no positive recovery from the symptoms, an alternative diagnosis should be considered.  In many cases, the patient suffers from pulmonary complications of lupus and there was never a problem with asbestos in the first place. Identifying and letting your doctor know of some of the symptoms you are experiencing is critical for correctly diagnosing your complications. In addition, its a good idea to do some background research on any health complications you might be experiencing, anytime an issue arises. Educating yourself on the differences between asbestos exposure and lupus will only increase your chances for a correct diagnosis.

In addition, educating yourself on some of the hazardous threats and materials that we come into contact with on a daily basis can help to ensure our safety and will ensure we are alert at all times. Identifying areas of potential asbestos exposure in your city would be a great start. In addition, educating yourself on the differences between asbestos exposure and lupus will help you to obtain a speedier recovery.

Landon Biehl is a advocate for healthy living and fitness tips. Residing in North Carolina, he enjoys spending time writing and helping to inform others with wellness information that can benefit families. In his spare time, Landon enjoys spending time at the beach, and being outdoors- running, swimming and kayaking among his favorite activities.

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“Organ Involvement in Lupus”

This podcast is one of a series produced by the Lupus Foundation of America for May which is Lupus Awareness Month. It can also be found in the archives maintained by C-span, available for public domain use. The Speaker interviewed is Dr. Diane Kamen, Associate Professor of Medicine, Department of Rheumatology, of the Medical University of South Carolina.


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