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SS-A positive, SS-B negative

Started by meow, February 23, 2010, 07:18:06 AM

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meow

Those are the lab results I got yesterday. First in-person discussion since dx.

SS-A is 2.2, where less than 1 is negative.
SS-B negative
Lupus negative
Rheumatoid factor 12, where less than 14 is normal.
Thyroid Peroxidase antibodies: 311, where normal is less than 35. Typical of Hashimotos.
Because of that last one, the endo ultrasounded my thyroid, checking for any nodules or tumors. It was as expected-- a shriveled, honeycombed prune.

I have been flooding myself with information lately, so I forget what I read about the difference between SSA and SSB. I asked him if I can expect to see a SSB positive eventually, and he said I could expect to see almost anything with this, eventually.
I went in there feeling relatively neutral. Resigned. I am usually that way with medical things---tell me what's wrong, tell me what to do, I'll do it, no problem. No point wasting time anguishing over the inevitable. Now it feels like it's sinking in. I don't feel any worse physically than I ever did, but I'm getting depressed today.

I have gained back 25 pounds in the last year, having lost 50 six years ago. I don't know if that's related, but it isn't helping. My husband observed that the pants I put on this morning are tight. I  made a face and said, "Everything I OWN is tight." But then I started to cry, which is not typical of me. I only cry at the movies or for sappy commercials, not anything serious! And here I am tearing up writing this, so I need to quit and get back to work.

Oh well. Thanks for reading this.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

DragonflyC

#1
Hi, Meow!

SS-B is considered a more conclusive test for Sjogren's than SS-A, but SS-A is still a pretty good indicator.  Even though your blood work is somewhat positive for SJS, however, that doesn't mean that you have it or that you are guaranteed to develop it.  AI diseases are weird that way. 

Are you on medication for your thyroid?  What about for Sjogren's?  Do you have Sjogren's symptoms?

If the Hashi's is a new diagnosis, give the meds time to work.  Fatigue, weight gain, and depression are all symptoms of Hashi's that your meds will likely help.  A lot of Hashi's symptoms are the same as SJS (inc. dry eyes).  

If you're on thyroid meds and your levels get to a good point but you still have SJS symptoms, it might be time to look into additional medications.  Plaquenil helps with fatigue and aches and pains (so do thyroid meds, though, so that might be all you need).  Evoxac or salagen can increase your salivary production if you have dry mouth.  Restasis might help you produce more tears if you have dry eyes.  

I was never a medication person, but it is important to be proactive with AI diseases.  My dry mouth isn't terrible, but my rheum insists that I take evoxac to help avoid dental problems.  Some out-of-date doctors only recommend eye drops and sipping water for people with SJS; these are good treatments, but other things are available to us and an informed doctor can help you determine a real treatment plan.

This disease is a royal pain, but lots of people do OK with it.  Give yourself time to adjust to your diagnosis, to let the meds work (it can take a few months), and to let your body and lifestyle adjust.    

Best wishes.

inga

Looks to me like you may have several autoimmune conditions going on at once.

Here is an article on SSA, or the Ro antigen.

http://depts.washington.edu/labweb/Divisions/Imm/ImmTesting/ANTI_SSA.html

Scottietottie

Hi meow  :)

It does take a while to sink in but like you said yourself - things aren't any different from yesterday, last week or last month! The only difference is a label and the label can be useful when dealing with medics.

A good endocrinologist can probably vastly improve your quality of life. If your thyroid is underactive - and it sounds like it is - I guarantee you'll feel a whole lot better when you get thyroid meds sorted out. You'll stop gaining weight too.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

kim31072

About 70 % of SJS patients present with SSA and 40% with SSB.Some have both. http://www.sjogrens.org/home/about-sjogrens-syndrome/glossary .SSA/SSB are seen in primary SJS in the absence of other AI illnesses.I have a secondary diagnosis of SJS.I dont carry SSA or SSB but meet it thru diagnosic standards and have the primary diagnosis of SLE.I am anti ds-dna positive.

i am glad you are getting answers and hopefully your weight struggle(thats hard on top of everything else I know)will subside now that they know the thyroid is wonky.

Looks to me like they will diagnose you with Primary Sjogrens w/Hashimotos(based on the fact that the SLE panel is neg.,pos SSA(this is only found in about 30% of SLE patients)and the RF is not high enough to be pos but it does fluctuate.

according to labtestson line the instance of being SSA pos is about 90% or greater in SJS but can also be seen in SLE.SSB is seen in SJS http://www.labtestsonline.org/understanding/analytes/ana/test.html abd Primary Biliry cirrhosis and sometimes Hep C.

I wouldnt worry to much about the development of other things.Let the diagnosis settle in,concentrate on getting the thyroid under control and a great team of docs(sounds like your rhuemy is allready good)...dont get stuck on labs and labels for now just think of it like this..youve gotten a positive result and know what you are facing.Now you can start fighting back that you have the answers.

take care and congrats on the pos confirmation



meow

#5
I have battled my thyroid for over 20 years, so that's not new. The reason for all the tests in the first place was that the thyroid levels looked perfect, but I was still feeling like crap! I was sure it was just another CFS flare-up, and was more concerned about my weight than anything else.
My ANA was positive, too,  which I knew last year. With a speckled pattern, which the endo said is typical for SS.

Thanks for all of the links. I have some more reading to do!

The endo gave me the name of a different rheumy--one much closer, also highly recommended. So I'll be calling her. It will be nice not to have to take a whole day off to go to the doctor.
You guys are so supportive :))))) Thanks!
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)