calling all seronegative folk...

[KellyG999]

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

[Carolina]

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

[love2teach]

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

[MiJoy]

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

[Dry1000]

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.

[LisaMarie]

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.

[arina83]

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!

[irish]

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

[Corella]

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.

[Virgi]

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 !

[Patze]

Hi Virgi,

Yep, I'm still the Queen of Sero Negativity!   And still have enough negative tests to wall paper a good sized room!

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