HI all!

I'm so glad to have found a place for support. I've been sick for the past 4 years and no one has been able to figure it out. But now - Lupus is a possibility. Here's what I've had for symptoms and please tell me if this sounds like lupus to you. After all you are the experts - the doctors, I have found out....are not.

ANA has been 1:40 the last one was 1:160 not sure what this means, doc said mildly positive? Isn't something either positive or negative?
Tendonitis, muscle pain
Feet are horribly painful, plantar faciitis and heel tendonitis, muscles pains on the top of feet.
sores/ulcers/lesions in nose
waxing/waning hair loss (all over head not patches)
sometimes pains in joints
bad bouts of episcleritis

I take prednisone right now and have for 2 years. They just took me off plaquenil to see what happens.

I also have this telecgantaisia (can't spell it) on my face. Sometimes it's redder than others. Some docs think it's connected - others dismiss it as rosacea.

I would so appreciate your help. Iam desperate for a diagnosis so I can get proper treatment.
Thank you
Jewelz

As the last poster said, Lupus can take a long time to develop enough to be diagnosed. Symptoms can appear long before blood work shows anything. I had symptoms a year and a half before I met the criteria for diagnosis, and that is pretty quick compared to others.

Some tests are not either 'positive' or 'negative'. Some tests, such as antibody tests, have titers which can be important in diagnosis. An ANA of 1:40 is barely positive and wouldn't hold much weight in the diagnosis of an autoimmune disorder. 1:160 is higher and could indicate autoimmune issues, but again, isn't extremely high. Healthy people can also have positive or elevated ANA's. Also, titers can change in time as antibodies come and go. So basically, ANA's can certainly indicate autoimmune issues but do not solely diagnose any of them as there are many other factors. The higher the titer, the greater the chance of autoimmune disorders (although I was diagnosed with 1:320 which is also not incredibly high). I did have other criteria such as elevated dsDNA, Anticardiolipin Antibodies, elevated SED, low C3 and C4, ITP, etc.

Here is a good article about the ANA titers:

http://www.itzarion.com/lupusana.html

My question to you is this: Since you didn't have a diagnosis, why were you on Plaquenil and Prednisone? It seems to me that you may have had an astute Rheumatologist who thought you were headed in that direction and treated you without a diagnosis. If that is true, he was probably doing you a favor. Both of those drugs can somewhat prevent a diagnosis by keeping antibody levels down. That is a good thing and I'd question going off of them, especially Plaquenil, as it could have kept you from full blown Lupus (I hate that term, but it fits). What is there to gain from letting symptoms get out of control just to get a diagnosis and end up back on the same drugs? I've read some pretty good articles about treating Lupus-suspicious patients prior to diagnosis to prevent development of antibodies. Antibodies are what generally cause most of the damage to organs and tissues.

Have you had further Lupus related tests?

As for your symptoms, they do seem Lupus-like, but without blood work that points to Lupus, it would be hard to diagnose. You were already on the meds that would be used to treat Lupus anyway. There isn't anything that can get rid of all of the symptoms and usually, only serious symptoms are treated with stronger meds.

Stay in touch - I'm curious to see what happens.


<br><br>[<i>This Message was Edited on 07/22/2009</i>]

[This Message was Edited on 07/22/2009]

Hi - thank you both for your answers.

I've been seeing a rheumy for 5 years now. Even went to Mayo and no one can figure out what disease this is. They all agree I have an autoimmune disease but can't seem to figure out which one.

Having a biopsy of my nose on Monday. Anyone else here with nose sores inside the mouth?
I think I'll post a seperate post on this.

Jewelz

They probably can't figure it out because it hasn't developed enough yet. Lupus isn't something that you either have or you don't have, and it can't exactly be ruled out. It takes a list of certain things to get a diagnosis. Have you seen the 11 criteria?

I know it's frustrating, but not having a diagnosis is sometimes better than having one. I was much better off before I was diagnosed. I was treated, as you are, and monitored. Once I developed the dsDNA, I began to have problems that I didn't have before, such as neuropathy in arms and legs, burning skin, dizziness, some autonomic problems, etc. Those cannot be treated easily and really make me miserable on top of the other problems I have.

I think your doctors suspect Lupus, but can't confirm it. They are usually reluctant to diagnose if the pieces don't fit because it can ruin your chances of life insurance and you may have problems with health insurance (pre-existing condition). It's a heck of a diagnois to give if they aren't certain.

Ulcers in nose and mouth are one of the Lupus criteria. It sounds like you have a lot of the physical symptoms, you just don't have the corresponding blood work.

I was in your shoes for a while. I had symptoms and didn't know what was causing it. My Rheumatologist put me on Plaquenil (I was already on Prednisone). I took Plaquenil for a while and noticed the joint pain stopped. Since I technically didn't have Lupus and felt better, I decided to stop taking Plaquenil on my own and then I made another big mistake. I began tanning. Shortly thereafter, I had some elevated antibodies that allowed me to meet the criteria. I was stupid and wish I had just stayed on Plaquenil and stayed out of the sun. I might be much better off today, but the damage is done and I have to live with it.

I"ve already got problems with life insurance...I was diangnosed first with RA - what my Mom has and I don't really have RA...so that screwed me up to begin with. Not to mention the year on Humira and 3 months on Enbrel....

I need a diagnosis. I need to know what I have so I can get treated with the correct drugs. I keep going further and further and further downhill. I can't walk any distance anymore, my feet are so very, very painful. And yes, I've been to all the doctors, have custom inserts, spent tens of thousands on physical therapy. I've got tendons at joints that are completely ruined by chronic tendonitis. What ever I have - I have full blown.

I guess I'll know more when the biopsies come back.

Thanks,
Jewelz