I DONT GET IT???

[Venessa]

I havent had a ss-b test since '05... which was considered a high positive 93.5... last week i had one done and it was negative... i dont have Sjogrens anymore??? I am on a lot of meds now do to neurological problems (can that mask Sjogrens???)..... My husband is mad at me because I am not convinced that I no longer have Sjogrens, I was always in the understanding that once you tested postive you have it...period... I have never had a biopsy and will not due to my neuro problems and no longer see a rhuemy cuz I hated her...my GP ran this test. My husband thinks I just dont want to get better...Cmon!!!! Does anyone have documentation to back the theory that once your positive your just positive... Anyone have a list of meds that can mess with this test...please help... Venessa

[Linda196]

Vanessa, many drugs can alter the autoantibody count, or even make the test negative. Plaquenil, Prednisone, Methotrexate and other DMARDS can have that effect.

Once you have produced the autoantibodies, you definitely have Sjogren's Syndrome. Some people who have it never produce autoantibodies, and are diagnosed by symptoms and/or a positive lip biopsy.

Unfortunately, once you have SjS, you always have it, in the same way that people with type 1 diabetes, or Lupus always have them. The diseases may flare or remit, but they are always there.

SjS itself has many neurological manifestations, so your current symptoms may all be a different presentation of your SjS.

[eyeamdry]

Venessa, according to my rheumatologist, you can have Sjogrens in a "remission mode" after receiving treatment.  In other words, once you've been treated aggressively, the Sjogrens may be calmed down - but I doubt it goes away.  There are always "miracles." 

Linda's post is right on. 

[Scottietottie]

Hi Venessa 

My blood tests never did show Sjogren's but they did suggest Lupus. My symptoms were strongly SjS though and that was the dx my rheumy gave me. He put me on Plaquenil in '04 and the last 2 years my bloods have been negative for SjS and lupus. I'm still on the Plaquenil. My Rheumy says to stay on it cos it's obviously working. (Still have a lot of aches and pains so I don't believe the SjS has gone but hopefully it's in a 'holding pattern')

Take care - Scottie 

[JannaLee]

My understanding is "there is no known cure for Sjogren's Syndrome" and it does not go away, but it can go into remission (or sleep mode).

I think your neuro symptoms are a clear indication you still have active disease (probably not in sleep mode) and the meds are keeping it tamped down (so maybe you're in drowsy mode.)

The following link will put you on a fact page of the Sjogren's Syndrome Foundation website.  Scroll down to the last question, "Is there a cure?" http://www.sjogrens.org/syndrome/faqs.html

Too bad your hubby isn't right about this!   "I told you so!" would be music to my ears!

Best to you Venessa,
Janna

[Venessa]

I just find all  this illiness crud old...so old... and without support and understanding  from home it makes you just want to break down and cry and everyday... sometimes I just want to pack my stuff and leave (if I didnt have small children)...

[Epson]

I don't get it either.  Your meds are working, that's a good thing, yes?  I have been on Plaquenil for two years and mt ANA is still sky high!  No more prednasone please.

Don't get me wrong, I understand your frustration and feel your pain.  This month I took three bad falls due to a loss of feeling in my right leg (I didn't know that I could do the splits, well actually I can't, ouch) and every other joint hurts or is popping.  Even my eyes work differently every day, some times the glasses are good and some days not so good.  I have a rash all over my back and chest that will not go away even when taking the strongest meds.

What keeps me going is knowing that I could have something a lot worse then Sjogren's.  I still have all my arms and legs, I don't have a flesh eating bacteria or cancer, well not yet.

It is frustrating to look so healthy and feel so crappy.

[Pooh]

Vanessa, I too have had my tests come back "positive".  The first time I told my rheumy "Oh good, then I don't have Sjs anymore."  He said "No, it doesn't work that way.  Once you have Sjs, you have it for life.  It just backs off now and then."

Well, I'm afraid he was so right.  My next blood work verified that,  real well.    Oh well, it was great while it lasted.

Epson,
Sorry to hear about those falls, I hope you didn't hurt yourself to bad.  Have you had the numbness checked out?  Don't let it go to long before having it checked out.  As you've said "you may look good, but this crappy disease can get you." 

Take care and let us know what the doctor says about this.

Pooh

[irish]

Vanessa, Tell your hubby to get off his high horse. lol This is from someone who doesn't know him and can talk smart.!!!!

The sjogrens can be in full bloom and a person can have negative blood work. I was this way for many years and finally just had positive blood work 2 years after a positive lip biopsy. Once you have had the positive blood work you have Sjogrens and the blood work and rise and fall any which way and you still have sjogrens.

Yes it does get old not feeling well any day of ones life, but as Epson says at least we are alive, able to take nourishment, able to watch TV, enjoy a sunrise or sunset. There is no guarantee to a perfect life and we could have worse diseases than these. As a nurse I have watched people die young with cancer etc and I guess I am pretty content to think that right now I may be dry, dizzy and other things, but I am not dead!!!

Hoping that you can find ways to adjust to sjogrens and enjoy life. Irish

[salsen]

Vanessa  negative blood work is not a sign you no longer have SJS.  I have never had a positive test result. Since the late 90's I have had very dry eyes and skin, stomach problems, aching joints, fall on your face fatigue and never ending neuropathic pain.  Some of my doctores say I do have SJS and others say suspected SJS.  Either way the body does not run right. 

  Maybe you can get your husband to read some of the info on this site.  It is not a matter of you not wanting to get better  --  believe me we would all love to be our old selves again.  It is more a matter of being realistic and understanding how fickle autoimmune diseases are.  They like to play hide and seek with both the doctor and the patient.  What is true yesterday with the facts of your case can be off in a few days.  Never a clear picture. 

Good Luck to you.  Hopefully your hubby will read up on autoimmune diseases and get a better understanding of how difficult it is to keep up with the path of the disease.  SJS is not alone out there  - most AI diseases play the same little game.

[Venessa]

THANK YOU FOR YOUR REPLYS.... IT JUST CONFIRMS MY ORIGINAL THOUGHT... DOES ANYONE KNOW OF ANY WEBSITES OR ACTUAL LITERATURE THAT BACKS UP THIS THEORY?? MY GP WILL ALSO WILL NOW BLOW OFF THE FACT THE THAT I HAVE AN AUTOIMMUNE DISORDER THAT CAUSES A LOT OF MY PROBLEMS... I NEED TO SHOW HER THAT THIS TEST DONT PROVE NOTHING AND NEEDS TO BE REPEATED AND CERTAIN INTERVIALS... CAN ANYONE HELP WITH THIS??? THANKS IN ADVANCE!!

[Scottietottie]

Hi Venessa

You could always print off some of the stuff on this site that talks about dxs without positive bloodwork to back it up. SjS canm't be made to go away. You can't have it - and then not have it. The symptoms tend to be there whatever the bloodwork says.

Take care - Scottie 

[JannaLee]

If you will go to the link I posted above you can get the information you seek.

Janna