calling all seronegative folk...

[whatsup]

Hi

How many of you are seronegative but still recieving treatment?  How did you convince your Rheumy to treat you based on symptoms or did you have additional tests?

Thanks

[Billydude]

My rhumy wrote the book about Sjogrens "Body out of Balance".  She says that 40 to 50 percent of the people are seronegative.   I was ultimately diagnosed via lip biopsy but she was convinced before hand by the long list of symptoms.  Incidently my symptoms did not include try eyes and mouth.
Steve

[whatsup]

Wow, that many are seronegative?  I thought it was more like 15%.  Is it worth getting this book?  Also if you are seronegative is a lip biopsy a fairly certain way of getting a diagnosis?  I do have the dry eyes and mouth but my Rheumy refused me a lip biopsy...I'm going to another in August and hope he is more open-mined or educated as to how the blood tests can be negative.

[Tryfan]

My rheumatologist seems sure that I have Sjogrens but my blood tests have all been negative.  In his letter to my GP, he stated that 40% can be negative so it seems people agree on this.  However, I don't think it makes it any easier for those with negative results.  I know I would like some proof before beginning any medication.  Mind you, I only have to read a few of these posts and I know I have it.  Just kidding myself a while longer...

'A Body Out of Balance' is well worth reading. 

Good luck

[kindandcaring]

Im seronegative..yet Im getting Plaquenil at least to try.

Not one Doc has said its Sjogrens bar the Ophthal.

[wednesday mc haggis]

Whatsup


yup many ppl are sro-nagative sjogrens, some rheumys will treat symptoms alone, others will ask that a lip biopsy be done to confirm, im sero negative, awaiting a lip biopsy, but my rheumy had stated if no improvment we will statrt you on planequil in july your next visit

T x(UK)

[Patze]

Hey Whatsup,

I too am seronegative (ain't that a lovely word?), and the rheumy is currently treating my symptoms.  I've also had the lip biopsy and it was ruled "negative" but it was mentioned that there was some inflitration too . 

The first rheumy I saw was pretty much convinced that SJS was wondering around the old body and talked me into using Plaquenil.  The current rheumy kept it up, but is now talking about cutting the dosage and seeing how I do.  I don't know what he's thinking as he's the one that kept waffling whether it was SJS or just SICCA, drove me nuts.  But I am also seronegative for Hashimoto's (and was diagnosed by a biopsy), so it seems that my body is not going to cooperate what so ever.

I keep having all kinds of testings being done (as the doctors keep finding some odd things), and I wonder where it will end?  Anyways, it's been a heck of a ride so far!

Take care -

Patze

[Redetha]

Bloodwork was negative but the lip biopsy was positive.  Also, I have had swelling in the parotid glands.  SJS is a "funny" (not in the ha ha way) disease.  Hang in there and good luck.   Hugs. Redetha

[lilbitz]

I am also seronegative and have had a negative lip biopsy,but my rheumy has still diagnosed SJS because my symptoms are so severe.I have no tears whatsoever and my glands have been swollen for almost a year along with a bunch of other fun symptoms.She in so many words told me all my results were negative because she feels the SJS is being caused by another AI disorder and it could take years for your bloodwork to show any signs.She gave me Plaquenil to try over a month ago and I am to afraid to take it.I feel so ungratefull I have a great rheumy who is willing to treat me despite my labs and I have not taken my meds.So anyway you can be seronegative and have SJS good luck to you.

[Scottietottie]

Hi 

seronegative here for SjS. Used to be mildly positive for lupus but after Plaquenil - I'm seronegative for both again. Am still taking the Plaquenil, the painkillers and have prescribed eye drops as well. Never had a lip biopsy but got a dx regardless.

Take care - Scottie 

[tedebear710]

I'm under the care of a Rheumy who originally treated me as having FM (fibromyalgia), then added "sicca" as the SJS symptoms escalated and my SED/CrP rates were high.  Other blood tests were negative.  She didn't insist on lip biopsy as she believes many people are sero-negative.  Last year had positive ANA. Started on Plaquenil last Augustl.  It has definitely helped, as have the punctal plugs the Opthalmalogist did.  Now my thyroid's enlarged so the SJS must be messing with it. 

Tede

[Virgi]

Seronegative here !!! How are all those seronegative Sjoggies doing ?

Yes , thank God this thread is still here ! It says its more than 120 days old but I am so lucky to have found it

Im having a hard time after being diagnosed in March this year, 8 months ago , to believe in my Seronegativity - and also fearful that am taking Methotrexate for 7 months now without knowing that bloodwork was positive -

I wake up and go to bed with this question: What if I dont have Sjogrens? What if I dont need to take this Methotrexate poisoning my body and making my life even more miserable ? Why does the doctor say that the Methotrexate is needed when I saw him doubt about my diagnosis - first in 2004 he thought it was a mild form of RA because I had a 32mg RA Factor on bloodwork, and now in 2011 EVERYTHING came out normal ?

We did all these tests: and all came out normal - I apppreciate all your input on this ! thank you

DNA and SSM (Lupus)
hemograma completo
eritrosedimentacion
antinucleares ANA
anti la SSB
anti ro SSA
proteina c reactiva
anti CCP

prolactina serica
testosterona
cortisol AM
cortisol pm
fsh-lh
estrogeno- estradiol
progesterona

Hemograma
Creatinina
Examen Orina
Glucosa
T3 y T4 hormonas tiroideas
T4 Libre
TSH
Transaminasa Go AST
Transaminasa Gp ALT

[Corella]

My rheumy initially said I was sleep deprived and may show up with sjogrens further down the line, it was only when the eye specialist said sjogrens immediately he checked my eyes, I had the fluro test to measure dry spots, I didnt even need the strips in my eyes, I have zero tear production, he said it was so severe he wanted to put plugs in, I have had two lots of plugs and I am getting the next lot done next week.

Then the dentist mentioned sjogrens, so I called the rheumy and he agreed it was sero negative, I have only had one raised ANA and CRP, then it went to normal, so I have to be tested every 4 months and I start the plaquenil week after next after my eye test.

I was going to have steroids but they make me aggressive so I cant.

[Doxie]

Virgi, I'm wondering why the doc put you on Methotrexate instead of Plaquenil. Plaquenil seems to be a standard med that surprises the autoimmune system, but not as much as Methotrexate. Could it be that he still thinks you have RA?

I have a very high RF - rheumatoid factor, but the docs just say it's due to Sjogrens.

I'm seronegative with a positive biopsy.

[prunella]

Virgi, this old thread is a good find!

I've been fretting over my "seronegative" status.  Not sure why it's so important, but I think it's human nature to want to sort and label things.

At least I now know I am part of a real subgroup. 

beth