sudden onset bilateral joint pain (whole body)

[gtwngirl89]

My daughter is 18 years old and has had joint pain throughout her body for the last month coupled with fatigue resulting from the pain. She has had no injuries or accidents. I have taken her to the doctor twice only to have them treat her for an existing sinus infection. She does have a sinus infection but my concern is the all over joint pain which is bad enough that she hardly moves because of it.  OTC Nsaids give minimal relief. Just enough for her to move to the toilet and so forth. As of three days ago she now has redness and pain in both eyes to which the doctor said it was pinkeye. I don't think it's pinkeye. I've research all I know and am out of ideas.  Any suggestions would greatly help. Thank you from an extremely worried mother.

[mkh9]

Here are the tests from the Mayo Clinic site:

While the presence of proteinase 3 antineutrophil cytoplasmic antibodies (PR3 ANCA) is highly specific for Wegener granulomatosis (WG), it is recommended that positive test results obtained by immunoassay be confirmed by another testing method.(4) This is best accomplished by testing for cytoplasmic ANCA (cANCA) and perinuclear ANCA (pANCA) by indirect immunofluorescence microscopy (ANCA/9441 Cytoplasmic Neutrophil Antibodies, Serum).
Alternately, VASC/83012 Antineutrophil Cytoplasmic Antibodies Vasculitis Panel, Serum includes tests for PR3 ANCA, myeloperoxidase antibodies, and, if indicated, cANCA and pANCA. This panel is recommended for the initial diagnostic evaluation of patients clinically suspected of having systemic vasculitis. Simultaneous presence of PR3 ANCA and cANCA has a specificity >99% for WG.(3)

mkh9

[mkh9]

Glad to hear your daughter is doing well. The Mayo clinic says to do more tests than just the PR3 to be sure of the diagnosis. I tried to copy and paste the tests but it didn't work. I'll try again. Glad they are tapering her off of the steroid. That is hard on the kidneys. Best not to be on it long.
mkh9

[gtwngirl89]

An update on my daughter.  She has received her first round of Rituxan and she is responding well. She is also on prednisone but the dr has started tapering that down. He seems very optimistic and please with her response so far. Thank you all who responded to my concerns.

[gtwngirl89]

Yes she has a positive PR3.  And thank you. I will keep posting.

[mkh9]

Yes I thought it was autoimmune by your description. I am sorry that she has it but now that she is diagnosed I hope the treatment will help her symptoms soon.  So her PR3 antigen marker came up positive? Let me know about her progress.
take care,
mkh9

[gtwngirl89]

I have an update on my daughter.  She has been diagnosed with Wegener's also known as GPA. It is an autoimmune disease. It is chronic but with treatment she can go into remission. Her treatment plan is Rituxan infusions which should start this week.  

For anyone else who may be experiencing the symptoms I mentioned, no matter what age you are, have them run blood work that looks for the wegeners PR3 antigen marker.  Also know as an ANCA test.  This disease usually is seen in people around age 40 and older but in rare cases it is seen in children.  Early diagnosis and treatment are essential for a good outcome.

You can also find information at www.vasculitisfoundation.org

[gtwngirl89]

We've been referred to a rheumatologist.  Symptoms are pointing to something autoimmune.  Thank you for your input and I will post more as I get the info.

[DrDani1017]

Any problems with urination?  Could be reactive arthritis...

[mkh9]

All I can think of is Lupus or another autoimmune disease. These come on often in the teenage years. I would see a rheumatologist. You can also post on the Lupus site and I don't If there is a general rheumatology site. My best friend has lupus. Both discoid and systemic. You do often get a facial rash along with the joint pain. They should do a variety of tests such as Anti-DNA, ANA, RA, and Complete blood count, and may take a biopsy of the skin. does she have any rash on the face or anywhere else? Do her fingernails have any unusual color or swelling? Anything else? Any fever? Fatigue is a sign of Lupus but pain will cause fatigue too. This is my suggestion to start with. Did you go camping or hiking where she could have been bitten by a tick?