New - treating as lupus/ no diagnosis

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PZH1355
New Member


Date Joined Dec 2014
Total Posts : 2
   Posted 12/10/2014 9:49 PM (GMT -6)   
Trying to get a grasp on some things-
I am: 34 yo male
Raynaud's, alopecia, fatigue began just under 3 yrs ago
Since - osteoarthritis in right foot, continued fatigue(extreme at times)
Rash on face( unsure malar , but fits description ) Degenerative disc disease in lower back
Spent 2 yrs with Rheumy who put all symptoms on stress and laughed at my concern for lupus.

Currently - New Rheumy ( better)
Hands under microscope confirmed secondary raynauds
Positive ANA 1:80 speckled- All other bloodwork is good. I have had elevated Creatine in blood but have good muscle mass and just started working out again - hoping it helps but hard to do much)
* Factor XI Assay - low / deficiency - think there is a strong relationship with this and SLE. Rhemy- mentioned it wasn't low enough for concern ? ( in the 50's for the measurnt of units - approx. 13 units below minimum range)
They are not diagnosing with lupus but want to treat as such with Plaquenil.
Also with the raynauds - 40 F starts to affect me and the cold seems to hit me hard with pain & fatigue.
Also mouth sores and nose
Would appreciate any thoughts-
Thx

Post Edited (PZH1355) : 12/10/2014 8:28:53 PM (GMT-7)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/10/2014 9:59 PM (GMT -6)   
Good that they are starting treatment -- the actual diagnosis is not nearly as important as treatment.

Generally Lupus treatment proceeds in 4 stages:
1) Plaquenil - takes a few weeks to kick in, may have some stomach upset at first, take with food. Get eyes checked.
2) Prednisone
3) Imuran, Cellcept, MTX
4) other options....
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

PZH1355
New Member


Date Joined Dec 2014
Total Posts : 2
   Posted 12/10/2014 10:16 PM (GMT -6)   
Is it common for treatment to start without a diagnosis?
Is it common to to have the Ana positive and not have any other bloodwork significantly abnormal. . Could this be early stage of active lupus?

Lots to process and appreciate infostion and thoughts

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/10/2014 11:09 PM (GMT -6)   
Yes, treatment often starts without a diagnosis as Lupus is very difficult to diagnose.

Yes, ANA may be the only "funny" lab work. Lupus is NOT diagnosed by lab work, but by the existence of 4 of the 11 recognized symptoms.

Check out the Lupus 101 thread, it will answer many of these "beginner" questions. Also follow the links in my signature below.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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