Waiting for diagnosis...feeling isolated and sad

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New Member

Date Joined Jul 2013
Total Posts : 1
   Posted 7/19/2013 10:13 AM (GMT -6)   
Hello, I am new here.

I began being really fatigued last summer and a bit sensitive to the sun and my PCP told me it was because of my anemia and depression. This spring I developed joint pain in my hips and was told that I was the same thing. I had a feeling something was not right and found a rheumatologist, who did blood work and found I had an ANA of 1/160 diffused, dsdna of 1, and some anemia (from periods). My joint pain has spread to my knees, elbows, and wrists. I've developed a faint malar rash on my face, mouth sores, dry eyes and mouth and more sensitivity to the sun the past few months. She is hesitant to call it lupus and writes "SLE?" as my diagnosis. Yet she is talking of me going on predisone or plaquenil. I feel like everything is getting worse and nothing is being done to treat it. I've tried ibuprofen, and had to stop naproxen cause it made me bruise. I feel pretty lonely and starting not to care about anything...I was wondering how long does it take to get diagnosed? sad

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/19/2013 11:12 AM (GMT -6)   
Sometimes it takes people years to get diagnosed, Lupus is a very difficult disease to identify. It isn't diagnosed by one clearly defined blood test, instead by having 4 of 11 symptoms.

You should probably take her advice and take plaquenil (known to help slow/inhibit the progression of Lupus) and prednisone (helps lesson the inflammation it seems is going on in your joint, and the accompanying fatigue). Sometimes we are only diagnosed by seeing if we react positively to these meds -- if not, it can be something else.

You not caring about anything can be a sign of depression. She might be able to give you an anti-depressant as well. And sometimes the fatigue is worse because of not getting deep, restorative sleep - perhaps you need a sleep aid (also some people are sensitive to prednisone and have trouble sleeping.)

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Jan 2013
Total Posts : 1038
   Posted 7/19/2013 11:40 AM (GMT -6)   
I completely understand how you are feeling. I am so tired and run down. At first I could not get a dx. Now seems like I cannot stop getting dx. Many of these conditions have symptoms that overlap. Joint pain can be caused by anything from Lupus to Ulcerative Colitis. The photo-sensitivity does help narrow it but it cans till be several issues. Most of them though are treated the same. The Plaquenil is the first option. It has a low risk of side effects. It is normally well tolerated. It is well studied. It does take a while to work which when you are in pain can really suck. But the Prednisone should help you feel better pretty quickly while you wait for the Plaquenil to kick in. Good luck
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31
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