A frustrated update- this is long. Sorry!!!!

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New Member

Date Joined Jun 2008
Total Posts : 18
   Posted 6/29/2008 7:52 PM (GMT -6)   
Hello everyone. Its been a few weeks since I posted, just wanted to process everything that's been going on lately. I had my first rheumy appointment almost 3 weeks ago. I was really impressed with the doctor, I feel she was very thorough with her assessments, and didn't give me that condenscending feeling I usually get when I tell certain doctors my symptoms. She spent more then an hour with me (which shocked me!), and we discussed the possibility of lupus, and her findings from her assessment of my symptoms. I was sent home with scripts for atarax and prednisone, and scripts for a ton of bloodwork, a brain MRI and chest x-ray.

I got the bloodwork done last Monday (and at 100lbs, I didnt think I would have enough... 13 vials!!!), and on Friday got a voicemail with "good news." Call the rheumy back, and she tells me that the ANA and that double stranded DNA test were negative. Fab! That being said, I still have 6 of the 11 criteria, so she feels she has to treat me for lupus, and do more tests. I also was deficient in C1 inhibitor, which is a cause for the angioedema I've been experiencing, and she has referred me to an immunologist for further work-up. After a bit of researching (gotta love Google!) I found out that the angioedema and lupus can be related to each other. So she called in a script for Plaquenil, Im still staying on the Pred, and I see her in a week and a half after the MRI and chest xray.

I just feel like I've been told "You have it but you don't." I guess I'm glad that she is treating me, and not just leaving me wondering what the heck is wrong with me. Is this normal practice to start Plaquenil if lupus is just suspected? I can honestly say the steroids are making me feel better (although with my attitude lately, Im sure my husband begs to differ!) The rashes and discoid patches are better, the joint pain and swelling is better, and the facial swelling is much better.

Has anyone else experienced this? From what I read, with a negative ANA, SLE is highly unlikely, but it's not impossible, right?

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 6/29/2008 9:43 PM (GMT -6)   
Hi RN,

Any given blood test is just a "snapshot" . . . it's like taking one frame out of movie (so my rheumy says). There are several members here with Lupus and no positive ANA. A couple of them actually had a kidney biopsy which was positive for lupus. It seems like there are more "sero negative" lupans than once thought.

I'm glad you have a doctor who will treat your symptoms. Lots of us fall in that category. I have never had a positive ANA and I have had one doctor say "Lupus" and others say "NO" . . . but they are still insistent that I will take plaquenil for my entire life. I did go off of it for a few months and got into real trouble.

It is WAY great that your doc is taking your symptoms seriously and plaquenil is a great "first guns" for your symptoms. It does take a few months to build fully in your system and you need to have your eyes checked regularly by an opthomologist. . .. but it is a pretty safe drug.

I hope you are able to lower your pred dose soon. Glad you are feeling better!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Forum Moderator

Date Joined May 2005
Total Posts : 6938
   Posted 6/29/2008 9:57 PM (GMT -6)   
In many cases, it is preferable NOT to have an actual diagnosis of lupus -- such as if you need to change health insurance carriers or get disability insurance.

Because lupus has such a wide variety of symptoms, sometimes doctors want to wait a bit before making a final diagnosis....trying different medications and approaches gives them a lot of information that helps with finalizing the dx.

Quite a few of us on the board have lupus, diagnosed lupus, but have never had a positive ANA - not sure where you found "negative ANA, SLE highly unlikely", but I've not found that anywhere in the 8 years I've been reading about it, here & elsewhere.

The criteria is 4 of 11, as described in the link below. There is NO single, definitive test despite what you may read in some places. The links at the bottom of my signature will give you lots of other good information & ideas.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

New Member

Date Joined Jun 2008
Total Posts : 18
   Posted 7/3/2008 6:46 AM (GMT -6)   

Just wanted to thank you both for the info. I did see on quite a few websites (clearly not very reputable) that having the negative ANA makes lupus unlikely. Even some of my nursing books say that, too! That being said, I'm sure I have to take a lot of the things I read with a grain of salt. It's really nice to have this site to get info and support from. Anyway, thanks again!!! Hope you all have a great 4th of July! My big sis is getting married tomorrow, I have to get crackin on my speech!!


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 7/3/2008 8:53 AM (GMT -6)   
All my blood work is negative and my signature shows my dxes.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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