View Full Version : Diagnosis pending

07-14-2008, 04:52 PM
Hi -
I am being evaluated for Lupus or some other autoimmune disorder. I'm a 50 year old female (post menopausal ...had hysterectomy 6 years ago for endometriosis and adinomiosis).

I've got a positive ANA with a high titer (640 1st test, 1280 2nd test) with a homogeneous pattern, lots of joint and muscle pain (no external swelling) fatigue, dry eyes (usually just in the morning upon wakening) and some malar erythema and sun sensitivity. I know generally SLE causes LOW RBC and platelets but is it possible to have high white counts if something else is going on as well? It's remained elevated from 11.6 -14.5 for the past 8 months on 6 separate occasions. I am on high blood pressure meds (just hydrochlorithiazide right now, stopped analapril about 2 weeks ago..thought it might be causing flu like side effects) and high Triglyceride / cholesterol meds, and vit D supplements for a vit D diffeciency (Last blood test showed an elevated calcium level...don't know what that's about...dr. mentioned something about possible parathyroid issues). 2 months ago I broke a tooth and had it extracted and more recently I had a deep gum cleaning for mild periodontal disease (Dentist doesn't think enough to raise my white count).

Anyhow, my Rheumatologist is doing further blood work but I just wondered whether others had such mixed signals, so to speak, and yet still ultimately were diagnosed with lupus.

I certainly don't want Lupus but I do want a diagnosis of some sort soon!
I was diagnosed with fybromyalgia(sp?) in 2002 but I feel like there's something else going on.

I'd welcome any feed back.


07-14-2008, 07:59 PM
First, let me welcome you to our family. Almost all of us dreaded having a diagnosis of Lupus, but at the same time, we were relieved to know that all of our aches and pains and various symptoms had a name and that we were not losing our minds or being hypochondriacs!
Lupus is a disease that causes inflammation throughout the body, in tissues, organs, etc. A high WBC usually indicates inflammation. Specifically, a WBC count measures the number of white blood cells in a sample of blood. It is a valuable diagnostic tool for a number of diseases that is usually ordered as part of a complete blood count. This test is normally performed to detect an infection or inflammation. A normal white blood cell count ranges from 4,500 to 10,000 cells/mcl (cells per microliter) of blood. The normal ranges in most labs are:
* red blood cells (RBC): 4 to 6 million cells per microliter
* white blood cells (WBC): 5,000 to 10,000 cells per microliter
* hematocrit: for women, 36% to 45%; for men 41% to 47%
* hemoglobin: for women, 12 to 15 grams per deciliter; for men, 14 to 16 grams per deciliter
* platelets: 150,000 to 450,000 per microliter.
These ranges may vary from lab to lab. Normal ranges are usually shown next to your results in the lab report.
Abnormally high numbers of white blood cells may be caused by allergy,
emotional or physical stress, infectious diseases, inflammatory diseases (such as Lupus), leukemia, and tissue damage.

I hope that I've answered your question. Please let us know if you need anything further.

Peace and Blessings

07-15-2008, 02:13 AM
Hi Donna,
Welcome to the site. I hope that you get some answers as to what is happening with you and soon. There are a lot of us in here that had to wait literally for years to get diagnosed with any of the Auto-immune disorders. I think that it is good that the doctor is testing you for an Auto-immune disorder. There are a lot of good folks that come in here and I think that Saysusie gave you some good advice. Good luck and God Bless.


07-15-2008, 03:48 AM
Thank you both for the info and warm welcome. The rheumatologist who had diagnoses me with Fibromyalgia is the one I went to when I was feeling so bad recently, I'd seen him about 6 times over the last 10 years for similiar type pains. He was reluctant to run ANY tests because he didn't expect to find anything. I know that because he had this stupid grin on his face that I specifically asked him about. I said, "What's that look about? You look like you don't even want to bother running any tests...that you don't expect to find anything" and he said "I don't"

So when my ANA came back positive (640) he started me on plaquanil which I got really sick from, at least I think it was from that. Two days after I started taking it I got severe abdominal pain that wrapped around to my back, I broke out in a drenching cold sweat, felt like I had to go to the bathroom, throw up and pass out all at once. It lasted about 30 minutes to an hour but it felt like an eternity. It was very scary, to say the least. This all corresponded with my being sick with a bad cold and cough. In fact I was coughing so much I pulled out my back and then about a week after that I broke my tooth and had to have oral surgery (don't know if the tooth incident was related to any of this). 3 to 4 weeks after that I went back to the rheumatologist who reran tests which still came back the same so he said he was confused and wanted me to see another rheumatologist who specializes in Lupus. I saw her last Thursday. She was very nice and seemed very thorough. She sent off about 5 vials of blood plus urine. I get the results next week. Hope she can tell me something definitive.

Thanks for listening.

07-15-2008, 04:43 AM
Hi Donna,
Good for you for being persistent! A good portion of us here have been given that same "look". I actually got too frustrated, and stopped seeing doctors for a while, even though I was very sick. Thank God, someone convinced me to pursue it further. I was finally diagnosed with seronegative SLE in May - after 9 years of being ill - 6 of them debilitated.
Hopefully the plaquenil isnt what got you sick, as its a really good drug for lupus, and has the least side effects of all the meds.
Welcome again, and keep us posted!

07-15-2008, 05:38 AM
Hi Donna,
I am wondering if you stopped taking the Plaquenil. I hope that you did not do that, because at first the medication does have side affects, but with time they usually subside. It takes about 5 months for the plaquenil to really kick in and help you. I have been on it for over 14 years and it has helped me a lot. When I first started to take it I had some nausea and stomach problems too, but with time they subsided. I hope that you get some good answers as to what is happening with you.


07-15-2008, 06:32 PM
I called the doctor when I had that reaction and he said I should stop taking it till my cold and cough cleared up. He hadn't even diagnosed me as having Lupus definitively. I'm under the care of a different doctor now. She is doing further tests which I get back next week. She knows about my reactions and says there's ways to avoid them moving forward which we will talk about if she thinks that is the recommended course of treatment. Frankly, it scares me. I live alone and I was about to call 911 when that happened. It was that bad. Who knows, though? Maybe it wasn't even from the paquenil. Maybe it was a kidney stone or something. I'm very susceptible to side effects. Usually if they say 1% have these reactions I'm that 1%.

I know steroids have dangerous long term side effects but years ago I took a high short dose (80mg) for a case of poison ivy and it was the first time I felt good. It was like, "So this is what it feels like to be pain free" Nothing hurt. At that time I was suffering from inflammation caused by endometriosis.

I'll keep you posted.

07-16-2008, 05:50 AM
Hi Donna -
I know what you mean about the prednisone...I was put on it a few months ago for my lungs (what they thought was an infection) and my whole body felt great!! I ALSO said "So this is what it feels like..." You should tell your new doctor that. I say this because my GP put me on prednisone and plaquenil and sent me to a rheumie. When I saw him, I told him how much better I felt with the prednisone (plaquenil takes a while to work, so I knew it was the steroids), he said, "Well that tells us somehting" I think the treatment having worked helped him lean towards a diagnosis more that if it didnt, you know? Be sure to tell her that when you talk/see her.
Im glad you found a new doc. What kind of rheumie sends you to another doctor that "specializes" in lupus? A "rheumie" is supposed to specialize in lupus!! Its a specialty field!! He shouldnt be called a rheumie then!!
Oh, these stories NEVER cease to amaze me....Anyhow, glad you are on your way to finding out whats wrong with you.
Take care and let us know what happens...
Love Lauri