Sign up: AGAIN??

Would you be so kind as to resign or if you haven’t signed up for the ride of a lifetime, would you sign up and walk this journey called lupus with all of us lupies? The place to sign up is on the front page, the first box on the right,  e-mail me of new posts. You’ll be notified of all of the fun and interesting posts and comments and you, too, can be part of this great excursion! See you soon!  


Thank you

 🙂 Let’s break away from “sick talk” for a while. 4 1/2 years ago, I launched this site as “Lupus Chronicles” and changed the name to “Lupus Guru” in May 2o14. Today marks 37,000 times (NOT INCLUDING ME) that my blog has been viewed. My friends from the blogosphere have viewed THIRTY SEVEN THOUSAND times. To many that may seem like ‘chump change,’ but to me, who hasn’t done a dang thing to promote or market this site, I’m calling it a ‘miracle.’ There are a lot of lupus blogs out there and one year I was on the 13 best lupus blogs of 2013. Never matter that I was probably 13th!


Has your medical device been recalled? Some used in lupus patients!

One of the very first things that many do when they find out that they have a disease like Systemic Lupus Erythematous, (SLE), is to look for more information about it. For example,” what are the symptoms, how did they get lupus, what might the treatment be, is there a cure or is it fatal or is it genetic.”

People recently diagnosed might ask questions like, “what will my future with lupus be?” The answers to these and other basic questions are all-to0 important, but in their haste and feeling fairly overwhelmed, many people who are recently diagnosed with lupus (or for any chronic disease)  forget to ask; and not all doctors offer comprehensive programs to teach.

There is a way, to get this information and that is from the American Recall Center. One of the first things a patient who has spent and the American Recall Center provides up-to -date information regarding the health and well-being of consumers around the globe.

In addition, the lists medical devices and drugs that have been recalled by the FDA, and educates on the many side effects that these medications can cause. You can view the latest information at: Find information on  your artificial knee or hip, tips about medications used in lupus and other autoimmune diseases; can be found in the Recall Center’s pages’



Lupus: a BRIEF brush-up!

What is lupus? If you’re recently diagnosed-or if you’re a veteran in seek of a brush-up on the basics, this is for you. Lupus i chronic: it doesn’t go away. What does that mean? It means that lupus will be in your body forever (until a cure is found). Lupus may be dormant for a while, but other diseases are likely present in our bodies and we don’t know it; like Sjogren’s Syndrome or Rheumatoid Arthritis. Often, these diseases are only too happy to step in take up where lupus left off! Now, you may be stuck with them, too!

Lupus is inflammatory and if there’s ONE thing you remember about lupus, it is that. Inflammatory, inflammatory, inflammatory. Whenever you may think of lupus or any autoimmune disease, they all have one thing in common: Inflammation. Inflammation of the sac around the heart:pericarditis. Infammation of the sac around the lungs: pleuritis.  Inflammation of the stomach: gastrits. Inflammation of a cyst: cystitis.

How does that happen? Normally, our bodies have certain cells which recognize other cells as foreign. They ‘re job is to mount a defense, kill these cells and get rid of them. In lupus, these cells are either fewer or unable to do their job or are overwhelmed and overtaken by the foreign cells (sounds like a battle to me.) Sometimes  we talk it is it seems that we’re on a battlefield of  full scale war! Is it any wonder that the medications used to treat autoimmune diseases are often anti-inflammatories?

The next post will concentrate on listing resources you may want to familiarize yourself with. Remember, that, in an earlier post I mentioned that not every site is accurate, These sites have tried and true information; the only thing missing, is the how personable, or technically competent of your doctor who knows YOU and knows YOUR history. That is why it is always the best combination approach to get information from these sites and CLARIFICATION as to whether is applies in your case FROM YOUR DOCTOR.

So, where is all this inflammation coming from? This is an explanation that I found from YouTube that explains it all.


Basic Lupus Treatment and Steroids

Many of us would be surprised at the amount we already know about lupus that the average consumer does not. For example, often we know what our ANAs and ESRs are. We know to compare them with previous ones and we might understand why they might be elevated. For example, often we follow our ESR (erythrocyte sedimentation rate) as a measure of inflammation in our bodies. Well, if it is elevated, it means that there is inflammation SOME WHERE IN THE BODY. More specifically, we might compare our ANAs.

We’ve learned over the years, that treatment for the symptoms of lupus involves treating the inflammation that causes those symptoms. That’s the reason doctors often suggest NSAIDs (non-steroidal anti-inflammatory drugs) like “Aleve” or ibuprofen.

Oftentimes, NSAIDs are adequate to control pain as they decrease inflammation which causes the pain. But, sometimes NSAIDs are not adequate. So, pain is managed temporarily with the steroid, prednisone. Sometimes, a dosepak is prescribed, a burst of an oral steroid followed by decreasing doses of that same steroid for 5 or 6 days.

Steroids should always be withdrawn slowly; we all know that. But do you know why? We might experience symptoms of the withdrawal (weakness, fatigue, body aches, joint pain).

The main reason for weaning from steroids slowly is because the adrenal glands already produce a steroid, cortisol. When you started taking oral exogenous (from an outside source) steroids, the body began to slow down it’s production of them over 2-3 weeks. As time passed, your body became completely dependent on oral steroids as endogenous  (produced from within the body) stops.

When the exogenous steroids are to be stopped and steroid therapy reintroduced, it is important to slowly taper the amount of steroids that you take because it ‘time’ for the adrenals to ‘kick back in’ with their production of cortisol, so exogenous steroids have to be slowly withdrawn. Why? Because cortisol is the steroid responsible for the ‘fight or flight’ response that our body mounts to stress, so something called adrenal insufficiency or adrenal crisis can result. We must be able to engage the fight or flight response, so it is important, very important that steroid tapers be followed exactly as your doctor orders. retrieved from the www: 9/19/2016

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.