Lupus

Today my doctor called. It's a new doctor since I moved out of state. She is sending me to a rheumatologist to see if I have Lupis. I don't know much about lupis other than that it is an autoimmune disease correct? I'm just wondering how likely it would be that I could have lupis. I have no other symptoms besides bruising. Was diagnosed with ITP in January. The lowest record of my platelet count has been 39k and last week I was at 73k.

Did tons of blood work and a bone marrow biopsy. The doctor told me that the ANA screen was positive but I do not know what that means. I had these test done in April and the doctor who ordered them mentioned nothing about ANA or Lupis. Should I call him back or just do what my current doctor says?

I read that you need a certain number of symptoms to qualify for lupis. If that's true then why is she sending me there? I only have low blood platelets. Otherwise I am very healthy.

I'm 23 years old and after bruising for a couple of months, I finally was diagnosed in January with ITP. Ruled out my medication as the cause by stopping it. I know it's not likely that I will find the cause for ITP, but I'm kind of scared.

Does this situation sound anything like yours?

Hello Lorna. I wish I could help you. I have heard a bit about having to meet a certian number of symptoms to be diagnosed with Lupus. And I've heard that it is process of elimination too. I believe there are several others here who can help you a bit. Are you on any treatments for the ITP?
Please make youself comfortable here!

ITP can sometimes be the first symptom of Lupus. However, just having a positive ANA does not mean that you have Lupus or will ever have Lupus. You should ask how elevated it is; some doctors see a slight elevation and overreact. A titer or 1:40 or 1:80 means nothing, but if you have one that is 1:320 or 1:640, it's worth looking into.

If you don't have any symptoms, I wouldn't worry. Yes, there are many things that have to fall into place to get a diagnosis and physical symptoms count a lot. Lacking those, you won't get a diagnosis. There are labs that can be done and it wouldn't hurt to get a baseline at this point.

I had ITP for 8 years before I began to have symptoms of Lupus. Two years after that, I got a diagnosis. It can take a long time for Lupus to develop, but just having ITP or a "positive" ANA does not mean much.

I don't want to treat unless it looks pretty bad. As far as I can tell, the side effects from medications seem to not be worth it when my counts are higher than 30k. My ANA in April says this: Speckled. 1:640 H

Is an ANA test from a blood test or the biopsy? I'm just asking since I had a new blood test last week and I wonder if the doctor saw that the ANA results were still concerning. She was telling me something about how much they had to dilute... my blood? She seemed concerned with this dilution thing but I still don't get it.

I guess.. I'm just a little upset because I went through a roller coaster when I was diagnosed with ITP. I thought it was the end of the world. Then I realized it really wasn't even a 1/4 of as bad as it could be. I got over it. Now a new condition is mentioned and I'm just seeing that my brain is going back where it was when I was first diagnosed. If it was just low platelets.. oh well I could deal with it. But I've read that ITP can be the first symptom of Lupus and years later it can manifest itself larger. I've also read that there is no cure for lupus, that you can only treat the symptoms. *sigh*

Lorna:

Yes, 1:640 is elevated. I can see why your doctor would want you to have further testing. For now, I wouldn't stress over it because an elevated ANA only indicates an inflammatory process and not necessarily a certain disorder.

The ANA is a blood test, and they do dilute the blood to see how many times it can be diluted and still see the antibodies.

No, there is no cure for Lupus, but those of us here who have it still lead pretty normal, although a bit challenging, lives. There are treatments.

With any diagnosis, it can take time to accept it and learn to manage it. Most people do get to that point though and learn to roll with the punches. IF you would ever get a Lupus diagnosis, you would do the same thing. Until then, don't spend your time worrying about something that may never happen. Certain things can trigger Lupus and avoiding those triggers can possibly prevent a diagnosis. If you really want to do yourself a favor, you will: avoid suntanning. Do not allow yourself to burn, do not use tanning beds. That alone can trigger Lupus quickly. Also, avoid soy and sulfa antibiotics as those can also be triggers.

Thank you so much for the information and advice. I know I'll feel better when I know what the issue is and find out all I can about it. I'm considering getting a medical bracelet and wearing it when my platelets are low. If I get diagnosed with lupus should I put that on the bracelet? Also my itp seems chronic, should I wear a bracelet all the rime or only when I'm bruising/bleeding? Thanks for all of the advice!

Lorna, I rarely take my bracelet off. I feel better when I have it on.

I only wear a bracelet when my count is low, so if for example I was in a car accident the emergency responders would know. I don't think there is anything about lupus they would need to know, but that I might bleed a lot is really important. Erica

It all depends on the situation. I never had a bracelet, mostly because I don't want questions as to why I have it. I'm very private about my health issues and only a few people know.

As for having one for Lupus, as I said, I don't have a bracelet. Some people with Lupus have clotting issues (even with low platelets) or other possible life-threatening issues, and they might want to put that on a bracelet just in case.