Lupus Support Group

To be diagnosed with lupus is a lot more than just an ANA test. To begin with, ANA tests can convert to negative if you take certain drugs like steroids. ITP (Idiopathic Thrombocytopenia) can be a symptom of lupus, but then it's just thrombocytopenia (idiopathic means "out of nowhere"). You must have had some other symptoms because what you listed is not enough for a diagnosis. I am not saying that your diagnosis is wrong or that you don't have lupus, only that we don't have enough info here. You need to have 4 of the 11 criteria by the ACR. You have 2.

However, a fluxuating ANA doesn't mean anything really. It still counts even if it goes back to negative. So yes, you can have lupus with a negative ANA. In fact, you can have lupus without EVER having a positive ANA, but, some docs think that is a subset of patients.

Did you have any other positive antibody tests? Have about a rash? Sun sensitivity?

Just be aware that this is a complicated diagnosis and it often takes years for all the symptoms for the diagnosis to surface.

Tracy

Hi Tracy,
Thanks for your reply. I did leave out some of the other symptoms-heat intolerance,fatigue,joint pain, a rash on my face that comes and goes, low-grade fevers every once in a while. I am seeing a rheumatologist and he has tested for all sorts of things. I've gotten some of the results but not all. From what I can understand from reading on the Net, a diagnosis of Lupus is not definite or even likely based on those results-lneg. Sed-rate but high CPR, normal hemoglobin. I don't have some of the other resu;ts but I feel bad and am worried. Anyway, thanks for your help. It's good to talk with someone about this.
Gail

All I can say is that you need to let your doctors run their tests, etc. Sometimes you have to give them a little more credit than you want to . I have always had a difficult time trusting doctors and now I am learning to trust them to know what is supposed to be best for me. There are things that will help you. I have the joint pain and fatigue, too. I have a neighbor who has lupus with those same symptoms. She has told me that it is rather common, but I don't know. She and I have kind of formed our own little support group with a couple of other people in our neighborhood who also have autoimmune diseases. It has given me a nice outlet to be able to talk about things that my family doesn't understand. By the time i got my diagnosis, I think I had been tested for pretty much every off the wall thing that it is possible to test for. Good luck finding a final diagnosis. I know that it can take a while sometimes. Take care.
Chrissy

Gail,

Unfortunately, a lot of the symptoms you mention can go with a half dozen autoimmune diseases. Are you running fevers? And if so are they higher at a particular time of the day? Heat intolerance is part of Stills' Disease, sun sensitivity is part of lupus. Those two symptoms can look very much alike. For instance, lupus patients will get sick outside even in a cloudy day; a Stills' patient won't as long as the temperature isn't warm.

As the others said, it's important for your doc to finish running al lthe tests because unlike 20 years ago, treatments are being developed that are VERY specific, that for instance inhibit one particular type of cell (like a B cell or Tumor Necrosis Factor). So whereas a RA or JRA patient might do well on Enbrel, a lupus patient wouldn't usually. In the old days, the docs used steroids for EVERYTHING. So it's important to know WHICH autoimmune thing is causing your problems. In my case, I took lupus drug after lupus drug and didn't get better. Once the docs realized I had Stills, they tried Kineret on me and - bam!! I was so much better.

The other thing is that autoimmune diseases develop over time. While you may not have all that's need this week to diagnose you, you may have more symptoms or changed blood work in 6 months.

So you're on the right path. You're getting tested and let us know what the results of the rest of your tests are.

Tracy

BTW, if you do have lupus, then the ITP because just Thrombocytopenia Purpura. The "I" is for Idiopathic and once it because part of lupus, it's lupus throbocytopenia. Idiopathic is short for "Idiot docs don't know what's causing this." [g]