Some basic info on Lupus

Many people do not understand what Lupus is or how it affects over 1 million Americans.  I’ve been officially diagnosed with Systemic Lupus since 2009, but had symptoms for years prior to that.  Lupus is one of the most difficult diseases to diagnose and is often referred to as the “Cruel Mystery.”  I thought I’d post some information that I found on the Lupus.org website to help further educate people and raise awareness of this potentially devastating disease.

What is lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are two to three times more likely to develop lupus than Caucasians.
  • People of all races and ethnic groups can develop lupus.

What is the prognosis for a person with lupus?

The idea that lupus is generally a fatal disease is incorrect. In fact, the prognosis of lupus is better today than ever before.

It is true that medical science has not yet developed a method for curing lupus, and some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:

  • Follow the instructions of their physician
  • Take their medication(s) as prescribed
  • Know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization especially those who maintain a healthy lifestyle and follow their physician’s instructions.

New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.

Medically reviewed on July 12, 2013

*Information reprinted from www.lupus.org

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In the zone with prednisone

So, I had my follow up visit with my rheumatologist this week – my double stranded dna numbers are coming down, slowly, but surely, thanks to the prednisone I’ve been taking.  I still feel tired and achey, I told the good doctor, and we decided to keep me on a low dose of prednisone for “a little bit and see how it goes.”  The other option is to start taking methotrexate, but my Oncologist doesn’t want me to.  So, for now, I’ll stay in the “zone” with my prednisone.  I feel a tad better on it, but not a whole lot.  Since Lupus is a life-long illness, I have to wonder what the long-term effects will be of taking all this medication.  My doctor said one of the side effects of prednisone is osteoporosis, which I’m already dealing with from my post-breast cancer medication.  So, there’s another medication I’ll need to take to help reverse or slow down the bone loss.  I had to take an Oxycodone pill the other night because I was in so much pain, and it did help – I just hate to be dependent on so many meds.  But, I have to do what I have to do to slow down the disease process, prevent a recurrence of breast cancer, and simply get through the day.  I work full time, have two awesome but very energetic kids, a wonderful partner who I don’t get to spend enough time with, an aging Mom, and am tired and achey every day of my life.  I’m not complaining, just explaining.  I feel very blessed to have the life I do, even though it’s tough at times.  So, I’ll take my meds and try to find other ways as well to deal with my symptoms.  I’m watching what I eat and trying to exercise on a regular basis.  I try to keep a positive attitude and focus on the things I can do, rather than what I can’t.  I write this blog and make jewelry as a creative outlet.  I also pray – a lot.  Life in the zone isn’t so bad – after all, it’s my life and I’ve learned to be grateful for every day of it. 

I hate the dentist, but I hate cancer a bit more

When I was diagnosed with cancer, I had to go through tons of scary, painful and, at times, embarassing tests. But, what really terrified me was when my Oncologist asked me when I had seen my dentist last.  I was ashamed to say it had been more than a few years.  You see, I had this irrational fear of the dentist (which, to this day, I still feel is completely rational!) – and the longer I didn’t go, the more terrified I was at what might happen when I did.  My doctor informed me that before I started chemo, I had to have a full dental checkup and fix any problems.  I must say, at that point, I was more afraid of going to the dentist than starting chemo. I ended up getting through it, however, and it actually wasn’t as bad as I had envisioned (the dentist that is, not the chemo). Now, my Oncologist and Rheumatologist are recommending that I get infusions of Zometa due to bone loss from a combination of having Lupus and being on Arimidex for post breat cancer treatment. Zometa has the dual benefit of helping slow the bone loss and also decreasing the risk of cancer recurrence. Sounds good, right? Well, guess what, I can’t start the infusions until I get a full dental exam. Ugh. So, I put on my big girl pants, made the appointment and went. Things overall are good, however, they suggested a deep cleaning and a crown for a tooth with an old filling. Apparently, Zometa can cause problems with the jaw bone and any potential dental problems need to be taken care of before starting the infusions. Plus, any type of chemo puts you at a higher risk for infection, and that can be extremely dangerous if any dental problems arise during treatment, which my doctors have said will probably be for 3 years. I have put off the follow up visits for a few months, actually, because I had to get dental insurance, was sick of going to doctors, and, yes, I was scared. But, it’s the new year, and, once again, I need to put on my big girl pants and get this taken care of. I have an appointment next week and, hopefully soon after that, I’ll be able to start the Zometa treatment. If I was able to beat cancer, I certainly can deal with the dentist, right? I’ll let you know….

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