ANA Negative?

[CarolinaGirl]

Hello All! I am a 25 yr. old female who has been experiencing chronic and extreme joint pain and fatigue for over 2 years. It has finally gotten to the point where I knew something had to be done so my family dr. referred me to a rheumatologist. Putting together the skin rash on my nose, the fatigue, muscle weakness, and joint pain, she was pretty sure that we were looking at Lupus. She had a whole battery of blood test run adn I show as ANA Negative. So she is considering my diagnoses "undetermined arthritis" and put me on plaquenil, stating that it would be at least 3-4 months before I felt any difference from the medication. It is a little frustrating that after testing ana negative, she just kinda stopped trying to find a real cause for what's going on. I was looking at information on the plaquenil last night when I came across an article where a dr. stated that someone who has had extensive prednisone and chemotherepy could possibly have lupus but still test ana negative. I was treated with prednisone and chemo for hodgkins disease when I was12. I know that was 13 years ago now, but I wonder if the amount of chemo I had was enough to cause my blood to always show ana negative. I was wondering if there was anyone else out there who is exhibiting several signs of lupus but whose blood is ana negative? It's not that I WANT to have lupus, it's just I feel a diagnoses would allow me to better prepare for what might be in my future. Not to mention that I have two young daughters and would like to have one more child before too much longer. THanks for any input!

Shannon

[wifajax]

Hi Shannon! style_emoticons/<#EMO_DIR#>/jump.gif

Yes, it is possible to be ANA negative and still have lupus. That is rare, though, with only 3-5% of the people with lupus being ANA negative. I doubt the chemo from 13 years ago can still be affecting your ANA test.

For some people, positive ANA (and other blood tests) come well into the illness.

Did your rheumy do any other tests besides the ANA? Complete blood counts, chemistry panels, and urinalysis are the usual tests.

I haven't been diagnosed yet, either, and I can sympathize with just wanting to know what is wrong so you can move forward with your life. style_emoticons/<#EMO_DIR#>/hugbetter.gif

Terri

[sam101360]

HI:

I too am ANA negative but have SLE and APS. I am not an expert by any means, I am just a sufferer who doesn't fit into the normal boxes, but I have a great Rhumy who looks outside the "normal" to ensure that we strive to give me a better quality of life. Call it what you will just make me well!

I had ovarian cancer in 1994 and think that this can cause you to remain ANA negative forever.

I believe that there is a post in the past where Lily noted that Dr Wallace states this as a possible reason for ANA negative Lupus in his book. I am sure that someone will come along with a better answer.

In the mean time Plaquenil is a first line fo defense for Lupus treatment, so you are on the right course of treatment as a start.

It is important that you get a Dr that specialises in Lupus usually a rhumotologist, as they will continue to monitor your blood work and have alternative testing that can show lupus even with a negative ANA. C3 and C4 and compliments being off (low/high) can be a good indicator of connective tissue disease/autoimmune activity.

The one thing you need to remember is that you need to keep being check and moinitored to ensure that things do not change.

Feel free to IM if you want to talk.

Stephanie

[CarolinaGirl]

I read an interview with Dr.Wallace and that is where I first saw the information that chemo can cause ANA negative lupus. I just didn't know if treatment from 13 yrs. ago would have affected my blood so that it would never test positive. I have contacted my oncologist who treated me for the cancer and asked for any information they could give me. I see my GP the end of this month to give him an update with what's going on with the rheumatologist and then see the rheumy again in September. She did do a complete blood work up and everything was within normal limits. She did not however do a urine analysis. I live in central california, only about 3 hrs away from LA. You don't know how tempting it is to see if I can get a consult with Dr.Wallace to get his opinion! Thanks for the support guys!

Shannon

[Lily]

Hi Shannon,

I'm thinking that she's reluctant to label you because of the negative ANA, most Rheumies would be the same. However she's started you on treatment and that proves she thinks you have some kind of connective tissue disease, she just isnt sure which one.

Do you know if she tested your Anti-RoSSA & SSB? They can be positive sometimes without a positive ANA. The SSA is generally associated with sub-acute cutaneous lupus or Sjogrens (a very similar disease to Lupus), and the SSB is generally associated with Sjogrens. I mention the Sjogrens particularly because of your history of Lymphoma - there is a slightly higher chance of contracting it if you have Sjogrens. I doubt that chemo all those years ago could change whats happening now, but then I'm no expert.

If your could check on those at least you would know whether she realises that. If she hasnt done those tests and also C3 & C4 then perhaps seeing Dr. Wallace again would be well worth your time and effort. I have to travel some 2 hrs to see my lupologist, but its well worth it to get the expertise and knowledge which has led to better treatment for me.

Good luck and let us know how you get along.

love
Lily

[Lily]

In addition you can certainly be ANA negative with Sjogrens, only around 60-70% test with a positive ANA, there are other diagnostic tests though to help diagnose.

love
Lily

[LoopyLoo]

<span style="font-size:12pt;line-height:100%">Hi Shannon,

I've had a few negative ANA tests but my Rheumy & Dermo still thought I had Lupus. They were reluctant to diagnose Lupus even though they knew that a small percentage of people can have Lupus but still test negative.

I had exactly the same symptoms as you but I was told that the joint pain was due to my face breaking out badly and that I was having a some sort of allergic reaction or was fighting an infection.

When I pushed for a private Rheumy appointmen he told me that the blood tests are so sensitve and that the lab conditions have to be right. That's why so many people can have several negative tests before finally having a positive. He also said it depends on how progressed the Lupus is.

I'm lucky that I only have skin & joint involvement. I was prescribed Plaquinel 3 weeks ago & it has already started to work for me. My GP said he was not surprised by this but everyone is different. My skin is good & joint pain is almost non-existant. Although I do find if I'm tired or stressed it returns.

I can't comment on the fact you've had chemo in the past but I hope you find some more answers in the near future.

Take care, style_emoticons/<#EMO_DIR#>/hugbetter.gif

Pam</span>

[CarolinaGirl]

Thanks for all the info everyone. I am glad that the rheumy has started me on treatment w/o making a diagnosis. I've been on the plaquenil for a week now and while it has made a great improvement on my skin, it hasn't improved the joint pain ....yet. I know that it takes 3-6 weeks for it to really get into your system. One reason I am pushing for an actual diagnosis is that my husband is active duty military but may not be much longer. I worry that w/o a real diagnosis, I may have problems finding a doctor back home who will continue to monitor and treat me. Even without a lupus diagnosis, this board seems like a really great place to stick around!

Shannon