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
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
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.
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
Im seronegative..yet Im getting Plaquenil at least to try.
Not one Doc has said its Sjogrens bar the Ophthal.
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)
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. ;) ;D
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! ;) ;D
Take care -
Patze
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
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.
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 :)
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
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 :D
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 :D
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
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.
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.
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
I am sero-negative, too but do have a high RA factor.
I was being treated by rheumy's - I have had two and I fired both of them. I am now being treated by my GP/PA wonder team who takes me seriously and treats my sysmptoms as best they can. They said a lot of people are seronegative and they actually have a number of us being seen at their office.
I like that they don't act like they know better than I do and therefore I should just ignore the horrible dryness. They have literally sat together (doc and PA) to brainstorm additional things to help me. PLus, they authorized the 10 week FMLA that I think saved my life - or at least my sanity.
KellyG
Well, it all depends on WHAT you want from the diagnosis of Sjogren's.
Do you want plaquenil, methotrexate, or prednisone? Some are chemo therapy drugs to lower your immune response, and some like prednisone over ride the symptoms and make you feel better. All are heavy duty drugs. If your suffering is great enough, you will want heavy duty drugs. And often a diagnosis of Sjogren's or another AI condition is required by the doctor to order those drugs.
My first rheumy diagnosed Sjogren's with seronegative blood work and thought a lip biopsy would be a waste of time. My symptoms were dry mouth and dry eye.
So I got Restasis, and Salagen/Pilocarpine/Evoxac.
I had more saliva and my eyes were better. But i still needed water night and day, and pure water spray during the night. I still do.
Eventually I got a whole slew of conditions that CAN be co-conditions of any autoimmune condition:
anemia, deafness, peripheral neuropathy, dizziness, interstitial cystitis (inflammed bladder), etc.
I saw gobs of doctors, continued seronegative (or SERONORMAL, which I prefer), but already had the RX for restasis and Salagen (or whatever) and eventually asked for Cymbalta as pain relief for PN and osteoarthritis.
It "may be" that I do have Sjogren's or it may be that I have a bunch of unrelated stuff.
The key is getting both the treatments and the attention that you need and deserve. I feel that I am getting what is working for me.
Hugs
Elaine
My Rheumy put me on a trial of Plaquenil due to symptoms in 2008. I had had severe dry eyes for a few years and began having joint pain and overwhelming fatigue. I had such a positive reaction to plaquenil that he has continued to treat me for Sjogren's w/o any positive blood work. I had a lip biopsy that showed chronic inflammation but unscorable.
I am now on methotrexate in addition to plaquenil due to respiratory issues that required long term high doses of prednisone.
Carol
I am seronegative, but found a wonderful rheumy who began me on plaquenil & evoxac in April based on symptoms & results from a Schirmer's done by my ophthalmologist.
Rheumy said he has seen enough patients to recognize the signs without positive bloodwork.
Also, he said that if I got better with the plaquenil & evoxac, then that should be confirmation enough. I did get loads better & when I saw him after 3 months he said that's confirmation that I should continue. He focuses on quality of life, says that's more important than specific diagnoses.
The first rheumy I went to was a complete waste of time, though. I was fortunate to find this new one just a few months later.
Keep trying until you find one who is willing to work with you.
Best of luck to you in your quest for help!
Blessings,
Joy
Hey Everyone
Im a seronegative 31 yr old male. About 3 years ago I developed horrible dry eye and mouth, my blood work was totally normal and still is to this day, I had two lip biopsy's, both came back normal. My dryness was sooo bad I was considering suicide, I simply could not continue life without saliva( I did not produce any). My rhuemy was a waste he said I did not have sjogrens, it was my GP that saved my life, he prescribed me plaquinel 200mg 2X daily and now I have my life back, my saliva production is practically back to normal, my toungue is normal again and so are my eyes and I attribute all this to PLAQUINEL.
Yup. I'm seronegative. But, my rheumy is treating the symptoms. I'm taking the generic form of plaquenil and my opt. has me doing restasis. I'm on month 3 of the restasis and just started month two on plaquenil. Rheumy said I could take the lip biopsy if I wanted to but as long as he's trying to treat the symptoms, I don't need the diagnosis. If it gets to the point that I may need some sort of disability, then my mind may change. But I'm only 46, have 5 more years to reach a milestone of being able to retire with 25 years at the University and able to maintain my insurance at the employee rate if I need. I'm really reaching out for another 5 years.
He did say that when you get the lip biopsy, you want to make sure that you get it done somewhere that really knows what they are doing. He said his team at the medical system he works at has one of the best.
If I had dry mouth, I would have the diagnosis. My mouth isn't dry but my tongue gets extremely dried and I get sores and little bumps in my mouth. Just a lot of saliva showing. I live on chapstick starting this time of the year.
He says if you don't have the positive blood work, you need to have 4 markers. I have three.
Seronegative here too, and have had bad experiences with both the PCP I saw for a year and the rheumy I saw. Neither believe me and aren't willing to treat symptoms without positive bloodwork. My ND thinks I probably have Sjogrens and Raynuads, but she's 7 hours away and can't prescribe medication. But having her agree that I have something real is very helpful, since most doctors I've seen make me feel like I'm crazy. Having new symptoms, too, (enlargements of the sides of some of my finger joints plus pain an crackling). Working on finding a new PCP and rheumy, but finding ones that are good and take my insurance isn't easy! Found one practice that sounds wonderful, but they don't take my insurance. Guess I just need to keep looking!
I have had symptoms for over 40 years and was not diagnosed until I had a lip biopsy in 2003 which was positive. I did not have positive blood work at this time though nor did I have dry eyes.
My rheumy put me on Methotrexate in 2004 because of my symptoms without even trying the Plaquenil. It was working well and I had to stop it because of other health issues.
I think that all the docs have their own opinions which doesn't mean that each one is always right. If you have a rheumy or some doc who is not listening to you and seems to be the one who is malingering then I would advise you to get a second opinion. If you are suffering and have all these symptoms there is no need to suffer needlessly.
I always wonder how these docs would treat their spouse if they had all the symptoms of sjogrens. I bet they would treat them ASAP!!! Irish ;D
Very true, it does make a difference having an 'official label'.
I had to pick up a referral from my GP today and I read the letter and it said 'She has recently been diagnosed with Sjogrens Syndrome and has been started on Plaquenil'
No mention of the words 'sero negative'.
I would be happier if it showed up in the blood but I am so relieved I have a diagnosis.
I wish there was a support group in Perth though, because at the moment I feel pretty lonely about this - do any of you feel like that or have felt like that? I look at healthy looking women and feel jealous, I wanted to go for a long walk today but felt so weak, my weakness actually wakes me up.
:-\
We´re quite a crowd the SeroSS !!
Im glad to read your posts - hadnt had the time to write. Im owing replies to all my threads actually and decided today was THE day to write !
Im hoping to get tested again - but the rheummie said no. Dont know why. He is so monotonous and doestn explain much.
Doxie, I have no clue why he put me on MTX and not Plaquenil - Good news is he took me off it last Friday. My face had been swelling really badly for about a month and a half and other nasty side effects happennin too - frequent infections and changes in menses - besides the other usual like mouth ulcers, calf pain, horrible Flu like pain all over the body - that added to the pain from Fibro and Sjogrens ! ay ayay
he gave me a break period and im guessing we´ll begin Plaquenil - my next appointment is towards the end of January - at the moment I have decided to buy an entire load of Omega 3, sam E, 5 htp, N- Acetyl Cisteine, Acidophilus, etc etc etc to treat myself with supplements.
Got no clue about dosage though - am determined to relieve the dryness with Omegas!!!!
Best to all Seronegative Folks !
Hi Virgi,
Yep, I'm still the Queen of Sero Negativity! :D And still have enough negative tests to wall paper a good sized room! ;) ;D
Like some of the others, I wound up with a rheumy that was a lot more convinced that I have SJS and it took a while for her to convince me to even take Plaquenil. After she left the practice, her partner had me listed as either having SICCA or SJS depending on his mood (gosh, and I thought I could get moody! ;))....the last couple of years, he has me listed as having SJS (sure learned how to bang my head against the wall without leaving too many marks! Had to quit banging my head though as the headaches got to be a bit much! :)).
Seriously though, please talk to your doctor before taking any of the OTC supplements you've listed...just to be sure, okay?
Take care of yourself -
Patze