Another Newbie....Kind of!

[sickofbeingsick]

Hi. First of all I have to say that I have been "lurking" for a few weeks trying to get some insight as to what I am going through and you all AMAZE me. You are dealing with so much, yet seem so strong.

I had a positive ANA and SSB. I just had my lip biopsy yesterday. It wasn't the most traumatic thing I went thru but it does hurt and my lip is pretty swollen. I should get the results in a week. My "luck" (not that I want it to be positive-but I have a history of undergoing tests and never finding out what is wrong) is that it will be negative. Then what? My rheumy said I am dealing with SOMETHING but what else could it be besides Sjorgens? My grandmother had Lupus but did not show the obvious signs. They are watching me for that but again, I am not really showing symptoms of either. I have joint pain in my hip real bad, my eyes are constantly irritated and my opthamologist did say a few years ago I have extremely dry eyes-but nothing I can't live with day-to-day, and some other issues as well. Oh and I'm 38.

Thanks for any input and for letting me share my experience with you. I look forward to following more of your stories as well as getting (maybe) an answer for myself!

Jen

[mews]

Hi sickofbeingsick, Welcome and just wanted to say it takes a long while to get answers to these questions. But hang in there it seems as though your off to a good start with your blood work being positive! Keep posting and asking questions, theres always someone around to answer!

Feel better
Mary

[DragonflyC]

SS-B antibodies are pretty specific for Sjogren's, so if you have those and symptoms (like your hip pain and irritated eyes--joint pain and eye issues are common SJS complaints) I'd be surprised if you had a negative biopsy.  I only have SS-A and ANA, and my rheum didn't ask me to have a biopsy before diagnosing and treating.  

The good news is that there are some treatments for autoimmune disease and symptoms that can be prescribed with your blood test results even if you don't get a clear diagnosis from the biopsy.  If you are interested in medication, you can ask your doctor about trying plaquenil (or the generic) for fatigue and aches/pains, Restasis for dry eyes (it doesn't help everyone and it's expensive, but it helps some people), or evoxac or salagen if you have dry mouth.  If you don't want to dive right into pharmaceuticals, you can try fish oil supplements and a variety of other options.  I'm sure you've seen some of Joe S.'s posts if you've been lurking; he's got some great tips for natural treatments.  

Some doctors hesitate to treat someone who doesn't have every single test result or symptom related to a certain illness, but AI diseases are very individual things.  No one's Sjogren's or lupus is exactly like anyone else's.  Don't be afraid to push for treatment if you think you need it.  Plaquenil especially is thought to slow the progress of diseases like lupus and Sjogren's among others, so if you can tolerate it (some people have stomach issues), it may be worth a try even if things aren't so bad right now.  There's some concern about eye issues, but they are rare even at higher doses and incredibly rare at the low doses those of us with AI issues take (usually 400 mg/day).

I hope that you get some answers soon!

[CAT1962]

Welcome to the forum! I love it here. The only people that truly understand what is going on with me.

I had a positive SSB (71 when "normal" was 0-19). I was told that I have Sjorgen's. I don't see how your Rheumy would question it with the positive bloodwork.

Come back often! 

[sickofbeingsick]

I know-I tried "fighting" him on getting the lip biopsy as I read numerous posts about how awful it was but he was determined to do it. He did plaquenil if I do test positive. When I google positive SSB the only thing that comes up is Sjorgens so I didn't think the lip biopsy was a must! My fear is that the ONE salivary gland she biopsied will be the ONE not infected Not that I want SS...or anything...but I guess it'd be nice to finally get an answer as to why I have so many problems and I'm only 38. I was also diagnosed with Meniere's a few years ago. Even with that dx my doctor said I didn't really "test" for it but he says it "looks" like I have it. It just gets so frustrating to never get a real answer. I know this AI is not black and white but it's still frustrating! Plus I'd like an answer so that I know what, if anything, my kids might have to deal with in the future. My other grandmother had RA very bad but my tests are negative for that thankfully. Thanks for welcoming me and making me feel at home--it gets depressing sometimes when all I want to do is sit down on the couch after working all day and my husband want to go go go and doesn't understand that I'm not just being a couch potato

[DragonflyC]

It does get depressing, especially when you haven't gotten answers or real help yet.  Try to keep your chin up, though.  You have clearly educated yourself about the problems you are facing, and you have found a place where people will support you (Sjogren's World has been such a blessing to me); those steps are so important.

My rheum treats me and prescribes whatever he thinks might help, but he also says "looks like" rather than "is" when talking about diagnoses.  I don't mind, as I'd rather he be honest about the fact that AI diagnoses are rarely set in stone than to commit himself to one view of what's happening with me and ruling out other possible complications. 

[sickofbeingsick]

My rheum treats me and prescribes whatever he thinks might help, but he also says "looks like" rather than "is" when talking about diagnoses.  I don't mind, as I'd rather he be honest about the fact that AI diagnoses are rarely set in stone than to commit himself to one view of what's happening with me and ruling out other possible complications.

That is SO true. I never thought about it that way. As long as however they are prescribing you helps-what does it matter. I went on a diuretic for my Meniere's and it has done wonders. I could barely function when I first got my dizzy spells it was so bad. Thanks for helping me think of it in that light!

[SueAnn]

Make sure to seek another oppinion if your biopsy comes back negative and your doctor won't treat you.   With your bloodwork and symptoms you should be able to start on plaquenil to slow the progression.   My biopsy came back inconclusive and that left me with only a positive ana, ss-b and symptoms and I was able to start treatment anyway.

Please advocate for yourself because no one else will do it. 

SueAnn

[Scottietottie]

Hi Jen 

Welcome to sjogren's world. Glad you've stopped lurking and come out in the open. I agree wuth what the others have already said.

I hope you find the site useful.

Take care - Scottie 

[sickofbeingsick]

So in your "expert" opinions if my biopsy (which is KILLING me now btw) comes back negative, even with my few symptoms I should keep on fighting for an answer? Maybe I'm just at the beginning stages of it? Some days I try to talk myself into thinking I'm fine, just getting "old" LOL...then other days, like today when my eyes are doing this thing where one is so dry and it gets like white stringy things across it (is that considered dry eye? sorry tmi btw-yuck!) and my hip is killing me I think there's got to be SOMETHING wrong. I picked up my son out of bed today and my legs felt like I didn't have enough oomph in them to even carry his weight .

[sickofbeingsick]

And I say "expert" with totally complete sincerity. You guys seem so educated about all of this stuff-even more so then the doctors that are..or in some cases aren't....treating us 

[DragonflyC]

I'm no expert, but your blood work and symptoms indicate that something is going on and it's likely Sjogren's. You may never get a complete answer, but your doctor should be trying to make you feel better.  

If I were in your shoes, I'd want my doctor to let me try plaquenil to see if my body is OK with it, as it can slow down whatever it is that's happening. Your illness might never get any worse even without treatment, but I'm a "hope for the best and prepare for the worst" kind of person. 

I'd also start on an anti-inflammatory diet (if you google it, you'll find Dr. Weil's and others) and maybe see if other dietary changes make any difference; some people here have seen a difference by going gluten free (I'm not personally bothered by gluten, so that doesn't apply to everyone).  For me, exercise, especially yoga, also helps, but I know not everyone can move well enough to get much exercise so that's an individual thing.  

Finally, I'd add fish oil supplements and a good multi-vitamin if you aren't already taking them.  

[Scottietottie]

Hi 

The way I think is that if you are having symptoms, it is human nature to want to know what is causing them. It's also up to the medical profession to try to alleviate those symptoms and that can be easier to do with a definite diagnoses. They should work on alleviating them regardless.

Positive SSB would certainly seem to be indicative of Sjogren's so whatever the lip biopsy says - it's worth continuing seeking answers.

Take care - Scottie 

[sickofbeingsick]

Thanks guys!

So as a SS "patient", are we more susceptible to having problems with gluten? I haven't done it for a couple of weeks but I did notice that anytime I would eat pizza (and other things-but noticeable pizza) I would throw it up shortly after I ate it. I had spaghetti last night but didn't have any problems. BUT my mouth isn't bothering me at the moment either. During the last 6 months or so my mouth would feel so dry that it would gag me and I had trouble keeping food down. I lost 17 pounds since December! They wanted me to go see a GI dr. but I've been waiting for the lip biopsy to come back (don't know why-but I'm just thinking if I DO have SS it might be some added info to tell my doc).

[Rose G]

You should probably go ahead to the GI dr.  I see one and have gastroparesis.  My rheumy says even if you have SS all different areas need to be seen by and treated by the appropriate dr.  My GI dr said even if the gastroparesis is from SS you wouldn't treat it any differetly.  He just started me on erythromycin which is costing me a fortune because it is not on my formulary.  I hope it works.  I can hardly eat at all and have lost 35 lbs since Nov, mainly because I have no appetite and cannot eat!