[cispence98]

Hey everyone I am feeling miserable, my whole body aches and I need to sleep all the time,
Doctor is confused about blood test, my ana is normal now ( it was always high)
but my dsdna has been extremely high now since Sept. In sept blood came back as high dsdna and high wbc count, in Jan my blood work came back high dsdna normal ana and low wbc (first time for wbc count to be low in over 2+ yrs)
My doctor said she called the lab to make sure the lab results were right and she said the lab didn't seem to understand the point of the ana and dsdna not jiving, so to speak. SO...again I gave about 10 vials of blood to see if anything has changed.
My ? is why is dsdna not matching ana I have all the symptoms of a lupus flare and I feel like crap, does anyone else have these kind of results and if so what does there doctor think!! My doctor thinks its a lupus flare and is treating it as one, but she is questioning the ana test!!
Help anyone!! I am back on high steriod treatment and the imuran after blood test come back hopefully she will switch me to metho and a anti malarial drug that is safe for my eyes, (can't be on plaqnial due to major eye problems)
I appreciate any input!! As always THANKS!!

 

[Katharine]

Hi there and hugs :hug:

Sorry to hear you're feeling so rotten

It sounds quite mysterious those blood tests but I guess they can be.
I'm glad that your rheumy seems to be taking you seriously though and is treating you as best she can.

Here's to better days ahead
:grouphug2:

Katharine

 

[cispence98]

Katherine...thanks for the reply, I appreciate it!! I am kind of bummed that no one else has commented or replied, I am sure there are others out there that have ideas I would love to hear them, sometimes I feel like no one cares!!! :sad:

 

[Sage Hen]

Hi,

I wanted to say, that I am sorry you feel so terrible. I hope your dr, finds out what is going on with your bloods soon.

I can't comment on your blood results. My mind, doesn't allow me to think real well these days..It's, all beyond me.

I care. I know, sometimes..it seems some get lots of replies to posts, and it seems sometimes, others don't. I think timing has a lot to do with it..I have felt that way too, on occasion.

Then, others like me, don't understand all the blood stuff..

I wish you all the best. Keep on.. and I am sure, you will get to the bottom of things..

Friend,
Sandy

 

[cispence98]

thanks Sandy...for taking the time to understand and for taking the time to reply its nice to hear from someone that can relate and read between the lines!!
Thank you!!:flowery:

 

[Clare.T]

Hello Laura

People generally reply only when they have something useful to say. So maybe most people were like me with no helpful comment to make. Or maybe those who have had a similar experience haven't been around. There's no need to take it personally.

If your doctor is treating it as a lupus flare I don't know what the problem is. ANA is not regarded as indicating disease activity and many doctors never bother to test for it after diagnosis. ds-DNA is another matter as it is generally regarded as reflecting disease activity and poor response to therapy.
I didn't answer your question because I don't have the two antibodiesand dont have any useful or valid explanation why they should be different apart from the above. There isn't necessarily a direct correlation between antibody tests.

When I was in remission I still had high Anti-Ro but became negative ANA.
Then my ANA was positive again in the USA but somehow negative a few weeks later in London.
I hope she can get you feeling better soon.

Good Luck
Clare

 

[cispence98]

Thank you Clare for your comment I did find what you said helpful and I agree about the anti ds dna I tested positive for ANA for over a yr, my thoughts are that since I am on steroid therapy that is keeping the ANA at bay but since I am flaring the ant dsdna is high , that was my thinking I was just hoping someone had some similar situation or helpful advice, I am just frustrated, I always appreciate the time people take to help!!
thank you

 

[mumoffive]

Hi Laura,
My blood results rarely reflec the disease activity, in fact my rheumatologist decded my original diagnosis may have been incorrect..however after he contacted the Lupus Clinic inSt Thomas they have realised my sympromts and inflamation and other indicators are strong enough for a definitive Lupus diagnosis, they now judge my disease more by clinical symptoms and pain brain fog etc than blood tests, they keep a check on my bloods but since inrease in Plaquenil and starting on Methotrexate my ANA is now only just above normal and everything else except platelets and iron is relatively normal. Howver my pain and fatigue is anything from normla.

hope that helps
hugs

 

[cispence98]

Tina thanks for the reply, my doc called me today and said you definately have lupus I haven't changed your diagnosis, she added she is just confused about the dsdna and ana not jiving. So I am confused I asked her to start the cellcept because my theory is that I am controling the disease (ana part with steroids) but I am flaring because I am not on any lupus meds I can't take plaqniel because of the detatched retina is a high risk for me, soooooo she is going to wait for the 10-15 vials of blood to come back from the lab and THEN prescribe the cellcept til then I suffer NICE huh?????? ughhhhhh!!!!!! :sad:

 

[LolaLola]

Dear Laura, I am really sorry I do not know enough about bloods to be useful. All I do know is that they often do not reflect how dreadful we can feel. You are obviously pretty down. I am here if you want to unload it.
x Lola

 

[cispence98]

thanks Lola and everyone who has been kind enough to read and reply to my post I appreciate it!! I see people in the chat room and I want to play!!
Thanks again for being so kind!!

 

[wifajax]

Hi Laura!

I've not had a positive dsDNA antibody test, but I can tell you from personal experience that the ANA can become negative over time. My first ANA test came back at 1:1280. I've had other positives ranging from 1:160 to 1:1280 again. After nearly 8 months on Plaq, my last ANA was negative. My rheumy didn't change the diagnosis - she just stopped doing the ANA test.

I agree with Clare, the ANA test is not very useful beyond aid in diagnosis. Your doc should be looking at more specific indicators of disease activity, both lab results and clinical symptoms. The dsDNA, ESR and CRP results are more closely tied to disease activity, and are what most rheumies look at if a flare is suspected.

Terri

 

[cispence98]

Thnx Terri... I agree I figure the ANA went negative after steroid treatment and that the high dsdna indicates flare, I showed my doc the past lab results that showed over a yr of high ANA blood levels and then once treated with the SLE lupus diagnosis it stayed in high normal NOW my anti dsdna has remained OVER the HIGH level since Sept and hasn't changed and neither has how I feel, I feel like crap and people are wondering why is she sick for sooooo long can't they fix it? I am trying my rheumy is really good but this is driving me nuts I talked to her again yesterday and she said that the ANA and and dsdna should be the same and they are not so she is confused she said which is it? High ana and high dsdna or normal ana and normal dsdna? I told her that the way I am feeling is affecting my way of life right now and I can't take it she said we should have the new labs back next week and then we will start the celcept. OK why not start it now when I don't feel good and the blood test are showing flare activity? DUH!!!!!!! :sad: :worried: