High ANA, negative ENA, non-specific symptoms, UCTD

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puglife
New Member


Date Joined Dec 2017
Total Posts : 1
   Posted 12/26/2017 1:07 PM (GMT -6)   
Hello everyone, I wanted to see if anyone else here had a similar experience with an autoimmune disease or advice/insight to offer.

I'm a relatively healthy 27 year old female and I began experiencing joint pain in my fingers in early November. No redness, no swelling, just asymmetrical joint pain (2-4/10, really mild but noticeable pain) that flitted from joint to joint, never lasting more than a few minutes. I thought this was weird because I never had joint problems before and all of a sudden, my hands were hurting on a daily basis. I am also a nurse and use my hands a lot, but I've been a nurse for a couple years now. Since November, the joint pain has also hit my knees, elbows, and wrists, but less frequently. Occasionally, I go through short periods where my body just feels very tired and heavy, even if I haven't done anything physically taxing. Sometimes certain spots on my skin feel extra sensitive to touch, as if I had a burn there, but the skin looks normal on the surface. I also recently experienced what I thought was costochondritis for a few hours.

I went to my primary and had a lot of bloodwork done. The only things that stood out were:

High ANA titer - 1:2560, homogeneous and speckled
Low vitamin D - insufficient but not deficient
Low alkaline phosphatase (twice in 2 months) - I was told this is insignificant
False positive Lyme test (confirmed by negative Western blot, only positive in IgG band 41)

An ENA panel was sent as well, all negative. I was referred to a rheumatologist because the pain did not stop. The rheum performed nailfold capillaroscopy, said my capillary loops were all very dilated, and said this is highly suggestive of secondary Raynaud's. My fingers and toes have always been very sensitive to cold, but there was never a color change, just pain and numbness. Rheum ordered more bloodwork for less common tests because she's "basically looking for any clues at this point." I should get results this week or next week. She also suggested starting Plaquenil, but I haven't decided on it yet because I'm still trying to weigh the benefits. Since my pain is mild (only once did it ever feel like a 5/10 for a few seconds), I don't know if I want to take something every day for it. I will say that the pain is irritating, however, because I am a nurse. In a typical week, I give over 100 injections and the repetitive movements do not help =/.

At the moment, my rheum is calling it "undifferentiated connective tissue disease," which is unfortunately very broad. I was told to watch my body carefully for new symptoms because my ANA is so high that an autoimmune disease is very likely to manifest itself. Sorry this is so long! It is frustrating to hear that something may happen, but we're not sure what or when.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/26/2017 4:08 PM (GMT -6)   
Welcome!

Plaquenil is not a pain medication. It inhibits the progression of auto-immune disease such as UCTD, Lupus, and others. It takes 2-3 months to build up in your system, and will help keep your symptoms from getting worse. These auto-immune diseases are very difficult to diagnose, and sometimes how we react to the suggested medications helps the Dr determine what the correct diagnosis is.

Most of us don't realize that the Plaquenil is doing anything, UNTIL we try to discontinue it... then we realize it really has been shielding us from some symptoms.

The only down side to taking it is that you'll need a baseline eye exam, then an eye exam every year after that -- it has a RARE reversible side effect on peripheral vision that we need to watch for.

I suggest that you read our thread Lupus 101 - tells you about things to look for and things that help. Let us know if you have additional questions.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 51
   Posted 12/26/2017 4:40 PM (GMT -6)   
Plaquenil took more like 4 or 5 months for me, so don't give up!
Being a nurse, you should have a lot of resources.
It really doesn't matter what name they give it, Lupus, UTCD, MCDT.... the initial treatment is always the same. Give Plaquenil a chance and avoid the sun. Sun exposure increases disease activity

Great info here:
https://www.hopkinslupus.org/
anthonyslupuschat.freeforums.net
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