More About Lupus: Symptoms and Tests

* In response to a comment on a previous post… but I think this is information anyone with questions about Lupus can find useful. I have provided hyperlinks to credit the appropriate sources as well as for you to be able to find more information on what I mention in this post. There are at least a couple of hyperlinks for online sources that I find most valuable when I have questions as well as one I just came across that looks worth checking out. I cannot vouch for that site as I only briefly looked around because it looks just that resourceful. I’ve already saved it to my favorites to check out later and may even sign up on it.  I made sure that all of the hyperlinks work and when clicked, they will open a new window so that you can easily close out of it or go back to your wordpress tab and still be at the place that you left off while reading this post.

As far as your high Sed rate (ESR/ Westergren/ Sedimentation Rate): This test is done to find out if inflammation is present in your body as well as other reasons after you have been diagnosed/ treated for your condition.  A high sed rate can be caused by many different diseases (including autoimmune diseases like Lupus or Rheumatoid Arthritis) but could be anything from an infection, cancer, kidney disease, inflammation of various organs or joints/tissue, pregnancy, etc.). Because of this, the Sed rate is used in conjunction with other tests to pinpoint exactly what you may have.  Even medication (including over the counter meds and supplements can affect the outcome of your lab work so be sure to let your doctor know exactly what you are taking). I work at a clinic and one of the physicians wants her patients to bring all of these things in on their visits and I always wondered what the reason was, especially for over the counter and supplements. I didn’t think that mattered. However at one point my lab work showed that something was wrong with my liver so I told my doctor about a supplement I was taking, as well as an energy drink. He asked me to stop taking the supplement for a week, not to drink alcohol (which wasn’t a big problem since I had quit years ago due to the Lupus & only started to drink a little on rare occasions but next to never) and it had been a while. I stopped taking the supplement and after redoing the test, everything was fine with my liver. My PCP told me that some people who were taking supplements that were supposed to be good for their liver (I don’t remember if they were to detoxify or the exact reason for them taking it) but that it in fact gave them liver problems. I thought how strange and ironic that was. I’ve learned that what you put into your body is very important because they can have seriously adverse effects as well as improve your health beyond belief. Also with the Sed rate, some inflammation causing diseases do not increase that rate, so a normal sed rate does not necessarily rule out a disease.  Some doctors use the C-reactive protein (CRP) blood test instead of the sed rate to aid in identifying inflammatory conditions.  Again, other tests need to be ran along with the CRP test because it doesn’t identify exactly where the inflammation is originating from or what is causing the inflammation.  http://www.webmd.com/a-to-z-guides/c-reactive-protein-crp

Lupus is a very difficult disease to diagnose because there are other autoimmune diseases or types of diseases that are similar to Lupus.  Some such diseases are Fibromyalgia (Affects the muscles & joints which causes pain and stiffness), Sjogren’s (causes dry mouth & eyes, often associated with Rheumatoid Arthritis), as well as Rheumatoid Arthritis, Glomerulonephritis (a type of Kidney Disease with inflammation~ what I have because of the Lupus), Chronic Fatigue Syndrome, & Vasculitis (inflammation of the blood vessels).  http://www.webmd.com/lupus/other-conditions-with-symptoms-similar-to-lupus

If you have kidney involvement, the tests that are used are blood creatinine levels (you don’t want them to be high), GFR (Glomerular Filtration Rate), and BUN levels are another indicator of kidney function.   http://www.medicinenet.com/creatinine_blood_test/article.htm

http://www.webmd.com/a-to-z-guides/creatinine-and-creatinine-clearance

http://www.kidneyfund.org/kidney-health/kidney-tests/kidney-test-egfr.html

SIGNS AND TESTS FOR LUPUS:

I read that Rheumatologists are the best person/ type of physician to see when getting a diagnosis for Lupus. Even though a PCP can run tests, Rheumatologists in general are more likely to make an accurate Lupus diagnosis than any other type of doctor.  You can always ask for a referral if your insurance is not a PPO and is an HMO or if the Rheumatologist’s guidelines are to always receive a referral before he/she will see new patients even if you have a PPO. I’m not sure what the chances of that happening though depending upon your doctor, and if the lab work that he is looking at has no indicative “evidence” for him/her to “justify” sending you to a Rheumatologist, or who knows, it may and he/she may have overlooked it. I would just say that I would like a second opinion, just for your peace of mind, if you need to say anything at all to protect their sometimes seemingly fragile egos. 🙂

http://www.usinlupus.com/lupus-information/what-is-lupus/lupus-diagnosis.html

The following symptoms also comes from the site listed above but I’m pretty much going to use it word for word so it’s mostly quoted.  I will also paste a link that will get you directly to their home page after this because I think it’s worth checking out. I already put it under My Favorites in my Lupus folder for easy finding.

Symptoms: Some doctors use the American College of Rheumatology’s SLE (Systemic Lupus Erythematosus) Classification as a guide to help make (or rule out) a Lupus diagnosis.  In general, if four or more of the following signs/ symptoms are or have been present, there is a good chance that you may have Lupus:

  • A butterfly-shaped rash across the cheeks and nose (called a “malar rash”)~ I had that thinking it was a skin (Dermatologist) issue which I never followed up on.
  • A scaly rash with raised patches (known as a “discoid rash”)~ there are two types of Lupus, SLE which can affect any and every organ of your body, any tissue, muscle, skin ,anything; then there is Discoid Lupus which in general only affects the skin. I found out this year that I have Discoid Lupus as well when I went to the Dermatologist for the first time for some skin rashes (probably from relocating to an island & being out in the sun more without listening and doing what I was supposed to do (cover up and wear sunscreen). The Hawaiian sun also feels different than it does in other places I’ve lived such as Las Vegas, Colorado, and South Carolina.
  • A skin rash that develops after sun exposure.
  • Mouth or nose sores (usually painless).
  • Joint pain and swelling in two or more joints~ My main ones are my knees (mostly the left but could be both), shoulders (especially the left), fingers, wrists, etc. Sometimes my fingers cramp up so bad that they get contorted into positions which isn’t humanly possible to maneuver by yourself. I’ve tried to replicate it but can’t. It is one of the most painful and strange things I have ever experienced and usually happens when it’s cold.
  • Swelling of the linings around the lungs or heart.
  • Kidney problems~ I was diagnosed with Membranous Glomerulonephritis at the same time as SLE. It already showed that I had the disease for at least several years because of how involved/ damaged my kidneys were.
  • A nervous system or brain disorder, such as seizures or psychosis.
  • Anemia, low white blood cell count, or other blood conditions.
  • An immune system disorder~ Which apparently I had for years but did not know about it. I was always exhausted but was like that for so long I didn’t remember if I always felt like that or if it started at some given point.
  • A positive antinuclear antibody (ANA) test. 

Depending on your symptoms, your doctor may still diagnose you with Lupus even if you have less than four of the above criteria. He/she can also rule out other conditions that have similar symptoms to Lupus (previously listed).

So here is the website’s home page: http://www.usinlupus.com/.  Check it out, it has a lot of resources that you can choose from (whatever is of interest to you).  I thought you might like the hyperlink on the home page that says “VisitLupusCheck.com”.  It looks like you can mark off symptoms you have or something.

I liked the following site because it talks about different lab tests done for Lupus (blood and urine tests). http://www.webmd.com/lupus/guide/laboratory-tests-used-diagnose-evaluate-sle.  I’ll list them here but the link will give you specifics on each one at the website if you’re interested.

  • Antinuclear Antibody (ANA)
  • Antiphospholipid Antibodies (APLs)
  • Anti-Sm
  • Anti-dsDNA
  • Anti-Ro(SSA) and Anti-La(SSB)
  • C-Reactive Protein (CRP)
  • Complement
  • Erythrocyte Sedimentation Rate (ESR)
  • Complete Blood Cell Count (CBC)
  • Chemistry Panel
  • Different types of urine tests (which are used to diagnose the effects of Lupus on the kidneys)

In general, I love WebMD (www.webmd.com). They even have a symptom finder and usually gives me sufficient information all in one place and makes it easy to understand. I always research in multiple places though since some sites may have different information and you don’t necessarily want to believe everything you read.  But if what I consider to be a “reliable” source as well as different websites that all say the same thing about certain aspects of whatever I am looking up, I tend to trust that more than the one different thing I read on a single site.

I hope that this has been of some value to you and have answered some of your questions. If not I can look more into specifics on something since I was going to re-research everything again anyway so I could use the information in my blog.

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1 Comment (+add yours?)

  1. tlohuis
    Mar 25, 2014 @ 14:49:31

    Thank you, thank you, thank you so much. You put so much work into this. this is wonderful. so much information and I can just bookmark all the pages. You are so awesome, my friend. Maybe I can become more knowledgeable about Lupus and make my case. I’m tired of not knowing. That’s a very scary thing. I was told I have antiphospholipid syndrome, my sed rate is often high, I get mouth sores, my WBC is most often low, not too long ago they were going to do a bone marrow biopsy on me because of it. It finally went back in the normal range, but noticed on my last lab work, it’s at the very bottom of normal. heading downward again, I have all the joint pain and fatigue, and a bunch of other stuff that I can’t remember right at the moment, things that usually co-exist with Lupus, according to a book I read about it. I cannot thank you enough for all your hard work. Sorry it took me so long to get here, but you know how it is being sick forever. I’ll let you know what I find out. I sure hope you feel “better” soon. You have sure been through the ringer. I’ll keep you in my prayers.
    Peace and hugs,
    Tammy

    Reply

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