swollen neck, headache, fatigue

[homersmom5]

Hi,
I know we all have swollen glands that come and go, but this is extreme. My face and neck are swollen up like I have the mumps! Also fatiued, yet restless and have a headache. I am waiting for the Rheumie to call back. Saw him last week and had very swollen parotid glands then. Now it's my whole neck! He had added another antimalarial (Quinicrine) to my Plaquinel which is supposed to be reducing inflamation. Opinions? Also curious to know how they tell when a person with Sjogren's develops Lupus?
Thanks,
Homersmom

[peacefulstorm]

I wished I could help you...I haven't run into this problem...there will be some body to come by and leave you information...I will keep you in my thoughts and prayers and hope they can fix you soon!

Hang tough and good luck! Cortnee'

[bob212]

Thanks for your reply to my post; yeah, hang in there; more knowledgeable people will probably reply but I believe there's a specific blood test for lupus (more specific than the ANA)  that's determinative.  Ask the rheumy when he/she calls back.

[Pooh]

Hi Homersmom,
I don't know much about Lupus other than my hubby has it.  However, I did find this link for you that explains the bloodwork that can be done to diagnose it. 

I hope this helps http://lupus.about.com/od/diagnosis/p/LupANA.htm

Pooh

[pudmott]

Hi Homersmom,

sounds like you got some funky inflammation going on there. I hope the docs can relieve it for you. theres nothing worse than that type of pain.

As for the lupus it is diagnosed with bloods and also a good doc will also look at symtpoms as well and not just the lab work.

Hope they can give you some relief


Pud

[BonusMom]

Having had the mumps when I was just 5, I can certainly relate to the swollen neck and face.  I was skinny kid and then POOF!  I was transformed to a pudgy one 

Might you be having an adverse reaction to the Quinicrine?  Just a thought......

I just received my doctor's report from December when she told me that I had Lupus and secondary SjS.  I, too, was curious as to how she determined that I had Lupus as I don't feel poorly aside from sore feet, brain fog, fatigue and dry mouth.  Honestly, I didn't think my "symptoms" were beyond the normal aging/gaining weight garbage.  Anyway, the report says:
Impression:
   1.  SLE
        + ANA (homogenous pattern)
        + histone Ab
        Arteriolar narrowing

    2. Secondary Sjogren's
        + SSB Ab
        + Salivary Gland (lower lip) biopsy

I was glad (?) to find out that the aretiolar narrowing is due to SLE as I had no idea what it could be attributed to besides high blood pressure--which certainly isn't my issue--or vasculitis.

My rheumy's report didn't mention that my salivary gland on the left was swollen and the tear break up time in the left eye was abnormal    Can you have SLE and SjS on just one side of your body--like shingles?  I've got to write this stuff down so I can ask at my next appt.

Anyway, I don't mean to steal your thread, but am hoping that this example will help you in your quest for answers.  I realize we all have very unique medical histories/symptoms and it's VERY frustrating when everything is nonchalantly attributed to a previously identified medical condition and further investigation isn't encouraged 

Please keep us posted on what your rheumy says.

[kim31072]

To bonusmom..the SLE /SJS arent one sided.The body just happens to be attacking the skin/tissue in that area at this time.SLE moves..and can attack any organ,skin,or connective tissue..which is why it is hard to get a handle on how you will feel cause you might wake up on tues and your hnads are swollen at the knuckles then wed it is your elbows etc.

Homersmom..they can do a test called the antidsdna test that shows when your body is reacting to cell neuclei.It is found in a few illnesses but mainly SLE.Also they patterns of the labs that they draw whether it be homogenous,speckled,rim all of these tell a story as certain ones are seen is certain illnesses and helps the dr narrow down what they are looking for.

http://www.labodia.com/en/ana/Atlas/anaatlasnuclear.htm  here is a link to some of the patterns and the diseases they are seen in.

Kim

[homersmom5]

Wow! Thank you all for the feedback! I have still not acrually spoken with my rheumie. His nurse finally called me today to tell me that they've made me an appointment with an oncologist on Tuesday and an ENT on Wednesday. More tests for more info.. They said it is not a reaction to the Quinicrine. I'll look at the links that a few of you sent me and I'll keep y'all posted.
God Bless Y'all!
Homersmom

[BonusMom]

To bonusmom..the SLE /SJS arent one sided.The body just happens to be attacking the skin/tissue in that area at this time.SLE moves..and can attack any organ,skin,or connective tissue..which is why it is hard to get a handle on how you will feel cause you might wake up on tues and your hnads are swollen at the knuckles then wed it is your elbows etc

Thanks for the clear explanation, Kim.  As I've mentioned in other posts, I'm still trying to comprehend it all and accept yet another chronic illness.  I appreciate your response