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Hello and a blood test question

511 Views 6 Replies 6 Participants Last post by  Monica3
Hi. What a wonderful board this seems to be. I am 43 year old woman in the USA and I have 5 wonderful kids and a great husband. I may be starting a Lupus journey, but I'm not sure. This is my story. Early in December, I had a bout of illness that progressed like this: Day 1, achy; Days 2 and 3 achy and low grade fever; Day 4 high fever that broke after 5 hours or so and then felt much better; Day 5 fine but slight lacey rash on trunk and extremities that lasted half a day; Day 6 woke up to extremely sore and swollen joints in ankles, knees, wrists and hands which got better with ibuprofen but I was left with an achiness behind both legs; Day 7 everything better but very stiff neck; Day 8 illness gone.

On Day 5 because I was going to a family party I went to my doctors to see if they thought it was ok for me to go and not be contagious. By the time I got there in the afternoon, the rash was gone, so they just told me that they thought it was a fever rash based on what I had told them. If I felt sick again, they told me to come get some bloodwork done.
That was a Friday and it was a Saturday morning that my joints were affected. Because it all subsided with some MOtrin I waited until Monday to call the doctor. At that point though I felt fine, because of the joint involvement, they ran some bloodwork. Also, I'm on Lipitor so they wanted to check out my blood for side effects from that. I believe the ANA came back elevated on that, so they did an anti-ds DNA test and CBC. My plateletts came back slightly low and the anti-ds test came back very high (255)

I was referred to a rheumatologist. He took a good history. I've very rarely been sick in my whole life. He acknowledged that the ds test was high. He also noted from prior blood work done when I was pregnant that I had no antibodies for the parvovirus B19 (Fifth's Disease). He ran more blood work and a complete Lupus screening through the Mayo Clinic and my bloodwork for the parvovirus came back at 3.9 while the normal range is .9 and under. My levels of the anti-ds test fell to 75 and the ANA fell back to near the normal levels. Also my red and white cells were all well within normal range.

I have not felt sick since that week in December. The rheumatologist believes that I had and acute febrile illness brought on by the parvovirus but he could not say that my reaction to the virus was the cause of the positive lupus test. He also felt that my "flare" was short in duration and perhaps indeed, it was more like a virus than Lupus. At this point, because I feel fine and the parvo test was so high and the other levels were dropping, he wants to test me in 3 months and see what happens then. I am happy that he wants to retest and feel comfortable with going that route since I feel fine. From what I've read though, I don't see how the anti-ds DNA test would be elevated and then fall if I didn't have Lupus. On the one hand, maybe I had the parvovirus too and because of the blood work done found out I have Lupus long before any symptoms manifested themselves -- a very lucky happenstance. But on the other, I'm afraid that the doctor won't treat me with Plaquenil since I'm not presenting at present with symptoms of concern. I have 5 kids that I need to see grow up and be there for, so obviously any headstart in managing the disease is desired.

I have done a ton of on-line research (admittedly, I am not a medical professional so that can always be dangerous) and I have not once seen anyone NOT have Lupus with a highly positive anti-ds DNA test.

Sorry this is so long, but as you know just talking about fears and concerns helps to deal with them. Thank you for listening.
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Hello and a big welcome to you! Glad you are doing better and I hope you continue to feel well. If it turns out that you do have lupus, you will get lots of support and helpful answers to your concerns. In the mean time, try not to worry to much, easier said than done, I know.

Sorry I don't know much about the blood tests but I'm sure someone will come along who does.

Good luck,
Hi Welcome to the forum.

I'm sorry to hear though that you've been unwell and possibly dealing with lupus.

Your question is a good one, and I am somewhat confused about it too. Like you, all the 'academic' literature I've read indicates that antiDNA antibodies ONLY occur in lupus. However, there are some people here who have been told the same as you - basically that a viral illness can cause a transitory positive DNA (although usually of a low titre). I've yet to see a reference for this statement, but since it was rheumatologists who have said it, I guess it must have some basis....

For you, the answer will almost certainly come with time. If it is not lupus, you should have no problems in the future. If it is lupus, it will almost certainly come back. The good news is though, that you have a rheumatologist who is considering the possibility of lupus, and you are being watched for it. It is extremely rare for someone to be pernamently harmed from lupus in the time it takes from beginning symptoms to diagnosis - ie it is usally caught and diagnosed before people suffer pernament organ damage. So don't worry too much about dying before you get a diagnosis. Keep informed and do report all ongoing problems, but if this turns out to be lupus, you are pretty much certainly onto it in time.

What you should do is think about life and disability insurance. If you don't take it out not, and later do get diagnosed with lupus, it will probably be impossible to get insurance at that time.

The other thing that should be checked (did the rheumy do this at your visit?) is your urine - checking specifically for blood and protein. It would be sensible to make sure this is tested now, and regularly (say 3 monthly) until it becomes clear what is going on with your health. Kidney involvement is the one lupus symptom that can happen without you feeling anything, and a simple dipstick is a satisfactory way of picking up renal problems early.

Keep us updated:blush:

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I think the rheumy you saw was very responsible, competent and thorough. I immediately thought parvovirus/5ths disease with your symptoms and recent medical history so I'm glad they pursued that possibility. Indeed, some viral infections can cause a briefly raised ANA and dsDNA titre.

You are being followed up, and monitored and should symptoms resume then you have a headstart on things. Best wishes!
THank you all for responding to my post. Whatever life throws this way, I hope to be as strong and inspirational as all of you.

Welcome to the site and hope to see you in the chat room soon. It is wonderful that you have 5 children.

I wanted to say that not everyone has the same problems, nor does what work for one work for others. We will support you and listen to you always. We don't mind advising but please do remember it is just that. I am sorry that you have found yourself facing lupus now. I am 41 yrs. old and can relate to you. I have been dx for 17 yrs. now. Take one day at a time and keep at personal journal of events to relate to the doctors for future visits. This will also help you to note even little changes. Will let you know that stress is a big one that will bring on flares so take special not of how you feel than. Also watch being in the sun as most seem sun sensitive.

The doctor could put you on the placqs even with no constant problems. The point of that med is to keep it that way. If he does it could take up to 6 months to get completely in you system to a helpful level. I would see how the next tests come back before getting to worked up. For most of us something set it all off for us and most even remember what it was that did it. Keep you spirits up and you thoughts positive. It seems for the time being that you are coping well by looking at it as an adventure. I did the same thing by looking it up on the net but all the info scared me so bad that I got sick just thinking about it. Not all the info out there is best conveyed in a helpful way.

If you ever need to talk just message me, we are all here for support :). Remember that others often don't understand the disease so don't let them bring you down.
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Dear Bmattiello,

So sorry to hear about your concerns. I went through a very similar experience as yours. In 1998 I had symptoms much like yours that resulted in a doctors visit, but the symptoms disappeared as quickly as they appeared, so nothing was diagnosed. Then in 2002 (a nice long 4 yr break), the symptoms returned out of the blue and I had a positive ANA and referral to rhematologist where I had a positive but low dsDNA test. The symptoms once again disappeared (after several weeks) and I was left with a strange diagnosis (palindromic rhematism). Then, in 2006 (another 4 yr span), I had two viruses back-to-back and an extreme return of the lupus symptoms. Well, the symptoms have not left and I received a formal lupus diagnosis in April 2007. It was at that time that I was started on Plaquenil because the symptoms were hanging around. No relief since that time, though I still pray for a remission like those I had before!!!

So, it's possible you will be free of symptoms for a while, or never return to the symptoms, though you now have solid records to support a lupus diagnosis should your symptoms return and hang around.

Record keeping is helpful in monitoring possible triggers and just keeping track of things (especially with 5 kids--you must be crazy busy!).

Good luck and I hope you remain symptom-free!
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