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Lissamarie
New Member


Date Joined Dec 2017
Total Posts : 5
   Posted 12/15/2017 1:38 PM (GMT -6)   
Hi everyone, first timer here! I am just seeking some advice from you all. I have been diagnosed over 20 years ago with Fibromyalgia and have been able to cope pretty well with it. about 2 years ago everything changed. I now have these episodes as I call them. All over muscle and joint pain, even right under my ribs and in my buttocks! fatigue so bad that it feels like I have a terrible flu but I don't. My pcp is convinced that I have more going on so she has sent me to different rhumys but they seem to want to blame it all on Fibro until recently I went to a new rhumy and I adore him! He did some blood work and my ESR was a little elevated at 51 and CRP just slightly above normal at 1.2. He did an ANA which came back positive for the screen and the titer at 1:160 and speckled pattern. I am not sure exactly what that means and I do not want Lupus or anything serious like that, but I am ready for someone to tell me what is going and to start feeling better. Please help!!

<Edited to add Subject>

Post Edited By Moderator (Lynnwood) : 12/15/2017 3:26:34 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/15/2017 4:26 PM (GMT -6)   
Glad you found a rheumy who is ready to do a little more investigation. Bloodwork alone does not diagnose Lupus.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus. The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

Has your rheumy made a firm diagnosis and is he suggesting any treatment? In the meantime, check out the first thread Lupus 101, for lots of great information.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lissamarie
New Member


Date Joined Dec 2017
Total Posts : 5
   Posted 12/15/2017 5:51 PM (GMT -6)   
Thanks Linwood! I have a follow-up appointment next month with him to discuss results. I have the positive Ana,mouth and nose ulcers, photosensitivity and the arthritis. Oh and also some UTI issues. I will definitely check out the lupus 101. Thank you again

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 51
   Posted 12/17/2017 12:41 PM (GMT -6)   
Hi
Sun avoidance is key. Wear sunscreen daily and avoid sun exposure. See if that helps.
anthonyslupuschat.freeforums.net

Lissamarie
New Member


Date Joined Dec 2017
Total Posts : 5
   Posted 12/19/2017 10:13 AM (GMT -6)   
Hi Tinkerbee
Thank you for your help. I have been going through this latest "episode" for a month now and it has taken it's toll on me. Taking a month off work to get some needed rest. I have not been diagnosed with anything yet but hoping soon. I just want to feel better.
Thanks again and hope you're doing well.

lupuschick
New Member


Date Joined Jan 2018
Total Posts : 1
   Posted 1/19/2018 9:32 PM (GMT -6)   
Hi Everyone,
I originally had ANA that was positive.
After being treated with Remicade and Rituxin, my ANA is no longer positive.
What does this mean. I still have nose sores, stiff joints, severe exhaustion.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/19/2018 9:47 PM (GMT -6)   
Lupuschick,

You'll have to talk with your Dr, but lupus is NOT diagnosed by ANA alone - I don't think any diseases are diagnosed by ANA alone.

What was your diagnosis that lead to your treatment with Remicade and Rituxin?

Remicade is not generally used for Lupus -- it's for treating Crohn's Disease, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis.

Rituxan is not generally used for Lupus -- it's usually for treating non-Hodgkin lymphoma and rheumatoid arthritis.

Hope this helps,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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