View Full Version : I might have lupus...need advice

08-15-2007, 10:36 AM
About a week ago I went to my PCP for a physical and upon complaining of a variety of joint pain (I'm 22) she ordered an ANA test to look into lupus. The test came up positive although she did not tell me the titer. She also did the SED test which was normal. Part of what motivated me to make the appointment is that a few months ago we found out my son has autism, and families of autistic kids are twice as likely to have autoimmune diseases.

Anyway, my PCP had me come back to do a SLE panel. Anyone know what this would include? I should get the results in a few days. Now I would love to hear your thoughts on my symptoms...

In my mid teens I started having joint pain and I talked to my pediatrician about it, as well as telling him about a stabbing pain in my chest I would occasionally feel. He pretty much seemed to laugh me off which gave me a permanent discomfort of doctors which I only recently got over. He told me to do stretches for the joint pain and said the chest pain was probably an irritation in the lining of my lungs. Now I'm really mad at him that he did not take me more seriously and do some tests back then.

At that same time I started experiencing Raynaud's phenomenon, which a nurse friend explained to me (though she did not say that it could be connected to anything serious) but since I didn't think anything could be done about it I don't think I've never talked to a doctor about it.

Anyway, around age 18 I had what I now suspect may have been a flare up. For a couple months I experienced an increase in joint pain, excruciating chest pains (same as described above), intense/frequent Reynaud's, and weight loss. I was under a lot of stress then so I dismissed my symptoms as stress related. Oh, and I had some kind of rash on my face...I thought it was acne by my doctor told me it was a rash but whatever Rx she gave me didn't work.

Since then I've gotten married and had two kids. The first few months after getting married I had some red blood cells in my urine when tested for UTIs (but no UTI)...I just assumed it had something to do with new marriage sex. :oops: Both pregnancies (which were SO uncomfortable) I swelled up horribley right before my third trimester and my blood pressure would shoot up and protein would be in my urine but they never felt it was quite severe enough to need emergency action.

Back to the present. I still have joint pain, it comes and goes in severity. Most days is very mild but some days I feel like every joint in my body is aching like crazy. I am tired all the time but then again I've been pregnant or breastfeeding for the past few years, with lots of night-waking and a special needs toddler. I'm not sure about the Reynauds right now since where I live we have had 100+ degree days for a while, but my hand do seem to get cold at odd times. I have a butterfly shaped area of redness on my face but it is not much more than the subtle color of blush. Do you think this is just normal redness or could it be the molar rash?

I have always felt that something was off in my body for many years and many reasons, so I do think I may have lupus, but at the same time I guess I would have thought I'd be much worse off. I don't know. Thoughts anyone?

08-15-2007, 11:05 AM
Hi Chonea;
From the description of your symptoms, it is quite possible that you may have Lupus. However, you could also be suffering from another auto-immune disorder. You must meet certain criteria before your doctor will make a lupus diagnosis and making this diagnosis is rather difficult because almost every symptom of lupus can also be attributed to other illnesses or disorders. Also, the symptoms of Lupus come and go and change spontaneously. Look at the criteria for diagnosing Lupus here and you will see that you do fit many of the criteria. But, your doctor will have to complete all of the testing before a definite diagnosis will be made.
With reference to your question about the SLE Panel:
The SLE Panel (aka: Lupus Activity Panel) includes antinuclear antibody (ANA), double stranded DNA (dsDNA) and complement components C3 and C4 (C3/C4). Titering is performed on samples that are screen-positive for ANA and/or DNA. This panel is used for evaluating patients with suspected systemic lupus erythematosus (SLE) and for monitoring patients with known SLE.
The positive antinuclear antibody (ANA) test and the presence of autoantibodies to double stranded DNA (dsDNA) were established as two of the possible eleven criteria needed for the diagnosis of systemic lupus erythematosus . It is for this reason that it has become an increasingly common for a doctor to order both an ANA and a dsDNA test at the same time.
C-3 and C-4 Complement tests (aka: Complement assay; Complement proteins), is a blood test that measures the activity of certain proteins in the liquid portion of your blood. The complement system is a group of proteins that move freely through your bloodstream. The proteins work with your immune system and play a role in the development of inflammation. Total complement activity (CH50, CH100) looks at the overall activity of the complement system in your body. However, other tests that are more specific for the suspected disease are performed first and C3 and C4 are the most commonly measured complement components when looking for autoimmune disorders. They are also run to
see if treatment is working. People with active lupus usually have lower-than-normal levels of the complement proteins C3 and C4.

I hope that I've answered your question, please let me know if you need anything further!

Peace and Blessings

08-15-2007, 02:05 PM
Thank you Saysusie for the info! Do doctors wait until they can see all the symptoms with their own eyes or do they use history?

I've read that 95% of SLE patients have a positive ANA. Are the other tests you mentioned in the panel as predictive?

Also, I'm not sure if you noticed my question near the end about my face right now. Its just subtle butterfly redness. I have no idea if most people have redness like that or if it is unusual...?

08-16-2007, 09:46 AM
Doctors generally do both: Use your history and wait to see what symptoms develop! That is one of the reasons why Lupus is so hard to diagnose and why the diagnostic process takes so long. No one test is primarily predictive for Lupus (not even the ANA). As I mentioned before, there are people who have Lupus but do not have a positive ANA (they must fall into the remaining 5%). It is a combination of all (lab tests, blood work, symptoms, & medical history) that will determine if you do or do not have Lupus.
Depending on the results of the panel, your doctors will determine if you do have an auto-immune disease. The results of the panel will indicate if that disease could be Lupus or some other illness. Your doctor will then use these results in combination with your symptoms and medical history to tell you if you have Lupus. The diagnostic process is one of elimination. The tests will slowly tell your doctors what you DO NOT have until it is narrowed down to what YOU DO have. Since there is no one test that says "Yes" or "No" to Lupus, it is a painfully slow process of elimination. Because Lupus mimics so many other diseases, it has to be done this way.
With reference to your butterfly rash. That was the first indicator that I had that something was wrong with me. My rash was very subtle and, actually, only on one side of my face. I was lucky that my doctor recognized it anyway! No, not everyone gets the butterfly rash. But, enough people get it for it to be considered a common symptom/sign of Lupus. When it does appear, it can be anywhere from very subtle to very angry looking. So, no, it is not unusual...it is quite common.

Once again..I do hope that I've answered your question. Please let me know if you need anything more :lol:

Peace and Blessings

08-17-2007, 01:54 PM
I got the lab reslults back! On the message they said all the bloowork was normal except for the ANA. The ANA titer was 1:160. So I have two questions. Do you feel that the other normal bloodwork RULES OUT lupus? And second, where does that ANA titer fall? Is it boderline positive or very positive?


08-17-2007, 07:43 PM
Hi chonea,
OK, I hope that Saysusie will read this one and comment on it, too. My results were EXACTLY the same as yours, right down to the 1:160. I've had joint pain in all my major joints (both knees, both hips and both shoulders) for about 10 years. This includes irregular severe spasms in my muscles. I was diagnosed with Meniere's syndrome 7 years ago. During the last year, I've had worsening symptoms. In Oct. I was peeing blood for nearly a week. In March, I was laid low with the worst migraine type headache I've ever had in my life - over a week with on and off days of cringing under my pillow. I've had increasing numbers of episodes where my toes, and sometimes nearly my entire foot have gone numb. I've had a lot of pain and tightness in my chest, causing me to be short of breath. It feels like a severe gas pain, but in the chest area. I've had a rash on my neck, and more recently, on both cheeks, which I've been told is definitely a malar rash. Worst of all, the ENT recently diagnosed me with Spasmodic Dysphonia, which means that my vocal chords spasm and make my voice very weak and breathy. Next week, I'll be seeing the only Dr. in town who can administer the treatment for it - Botox injected into the vocal chords. The severe fatigue that I've been feeling has been getting progressively worse. I hobbled around Vegas, got VERY exhausted and peed blood when I got upset by being stuck alone in the airport with a delayed flight.
After all of this, the rheumy said that everything was normal except for the ANA, so I don't have a disease that he would treat. He prescribed a NSAID which did nothing. Both the rheumy and the ENT seem to think that I do have an autoimmune disease which is neurological and is causing most, if not all of these symptoms. Now they want me to see a neurologist.
My question is this - don't all of these symptoms qualify for at least 4 of those 11 symptoms of SLE? As soon as my PCP mentioned Lupus and I researched it, all of the symptoms that I've been dealing with on my own for years suddenly made sense. I know that it takes time, but I'm getting very tired of being passed from one specialist to the next. I understand exactly what you are going through, chonea.
What do you think, Saysusie?

08-21-2007, 08:59 AM
Hi Chonea & Magistramarla;
A titer above 1:80 is usually considered positive for lupus. A true positive is not considered until the titer reads 1:80 or 1:160. The titer shows how many times the technician had to mix fluid from your blood to get a sample free of ANAs. Thus a titer of 1:640 shows a greater concentration of ANA than 1:320 or 1:160, since it took 640 dilutions of the plasma before ANA was no longer detected. However, the difference between titers of 1:160 and 1:320 is only a single dilution. And it doesn't necessarily represent a major difference in disease activity.
A positive ANA test by itself is not proof of lupus. A positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease. Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA.
Almost all patients with lupus have the presence of the antinuclear antibodies (ANA) or if negative, an SSA antibody or anti-phospholipid antibodies (associated with an increased risk of thrombosis such as a blood clot or stroke or miscarriage). HOWEVER, there are patients, although rare, who have lupus despite having negative tests results for these. Most Sjogren's syndrome patients will typically exhibit an elevated ESR or have a positive ANA, RF, SSA or SSB antibody in their blood.
It is possible to have rheumatoid arthritis (or other rheumatic diseases) and have blood work that is within normal range for inflammation markers? Occasionally a patient with a rheumatic disease (such as Lupus & RA) may have active disease even though all the tests for these markerss are normal. In general, those patients without these abnormalities in the blood are less likely to develop joint damage due to the disease.
It is important to remember that while blood tests are helpful in confirming a diagnosis and assessing your disease activity, it is more important for your doctors to diagnose and treat you based upon the clinical symptoms that you are presenting! It is important that you both ask your doctors to treat your symptoms (as they are not in your head) until a diagnosis is made!

I wish you both the best!
Peace and Blessings

09-14-2007, 02:21 PM
magistramarla and chonea,

I am new to this forum as I found it doing research. Both of you describe exactly what I am going through. In fact, it was as I had written it myself. I have Diabetes and my doctor likes to blame everything on that. I have also been DX'd with Fibromyalgia.

I'm wondering if the positive ANA and the negative DSDNA could be linked to Fibro. Have either of you a doctor talk about fibromyalgia with you?

Saysusie, what are your thoughts on Fibromyalgia?