Anti-DNA double stranded test

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

vandygrad97
Regular Member


Date Joined Nov 2003
Total Posts : 66
   Posted 8/19/2015 7:23 PM (GMT -6)   
Hi folks,
I need your words of wisdom. I have been diagnosed with UCTD. I also have Crohn's Disease. I have been seeing a prominent Lupus specialist for about 3 years. I just got my anti-DNA double stranded test back and it was positive. All my doc said was that there would be no change in my treatment, which I understand, but I wasn't given a diagnosis. I am already on Imuran which does well for both Crohns and connective tissue diseases. Anyway, shouldn't this be a pretty definitive diagnosis for SLE? I know this doc is hesitant to make a final diagnosis, but come on. It has been 22 years of dealing with doctor to doctor. I believe she is letting the Crohn's diagnosis take over the fact that it might actually be wrong and that all of this may be Lupus. Anyone have any information on this participular test and what it means? Please advise. Feeling very frustrated.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 8/19/2015 9:03 PM (GMT -6)   
Treatment is pretty much the same, the only way Lupus is differentiated from UCTD is by symptoms. See the link below, Diagnosing Lupus for more information.

Treatment for Lupus is Plaquenil, to inhibit disease progression. Prednisone, to control inflammation.

Imuran, Cellcept, or MTX to treat if Prednisone doesn't get things under control. It's not known which of these will 3 work for an individual, what works for some won't work for others, it's trial and error.

Then the newest meds, the current Big Guns for Lupus -- Benylsta and IVIG.

Unless you have some huge benefit coming from having a Lupus diagnosis, it really isn't worth worrying about as long as you are receiving treatment and your symptoms are quiet. (Some disability insurance companies do squabble less with some diagnoses than others, but other than that I can't think of what good a different dx might do you.)

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 8/19/2015 9:05 PM (GMT -6)   
PS. You have a post from 2013 where you say you were diagnosed with Lupus by 2 doctors! Here is a link to that post.

www.healingwell.com/community/default.aspx?f=17&m=2672949&g=2673218#m2673218
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

vandygrad97
Regular Member


Date Joined Nov 2003
Total Posts : 66
   Posted 8/20/2015 7:17 AM (GMT -6)   
You are right, Lynnwood, I have had two lupus diagnoses from two different doctors, that is why I am frustrated. My current doctor, the head of the Lupus Center at Johns Hopkins, refuses to diagnose it as Lupus. It doesn't meet her criteria, apparently. I know it doesn't make any difference with my treatment, but I am tired of trying to explain to every other specialist that it could be lupus, but we aren't calling it that....rigamarole. After this many years, just give it a name and move on.
Current Medications: Entocort, Prednisone, Dexilant, Topiramate, Lisinopril, Lotemax drops, Restasis, Vitamin D and Calcium, Iron supplements, Vitamin B-12 monthly injection
Diagnosed with Migraines 1992
Diagnosed with Crohn's Disease of Ileum 2002
Diagnosed with Fibromyalgia 2009
Diagnosed with Anemia
Diagnosed with UCTD/Lupus 2012
Diagnosed with Sjögren's Syndrome
Crohn's Colitis-new

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 8/20/2015 11:30 AM (GMT -6)   
That's very strange. Sounds frustrating.

Perhaps you can simply tell other specialists it's UCTD, and add that previous Drs have called it Lupus.

I might ask this current Dr why she doesn't want to call it Lupus. I suspect it's because you have other symptoms (like Crohns), and the UCTD diagnosis includes symptoms that Lupus doesn't - thus UCTD fits you better than Lupus does.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, April 22, 2018 11:57 PM (GMT -6)
There are a total of 2,954,463 posts in 324,123 threads.
View Active Threads


Who's Online
This forum has 162163 registered members. Please welcome our newest member, Kburch.
222 Guest(s), 4 Registered Member(s) are currently online.  Details
George_, Abhirraai, Sheeks175, NotQuiteAntonio