Author Topic: Sjogren's syndrome Vs Sicca Syndrome  (Read 9442 times)

seren

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Sjogren's syndrome Vs Sicca Syndrome
« on: February 06, 2010, 05:48:37 PM »
Hello All,

Haven't posted for a while but hope your all doing ok and for those of us in the UK...spring is on the wayyyy...(I HOPE)  :D

I hope someone can help clear this up for me??  I was diagnosed with SjS bout a year ago via positive lip biopsy.  Only my ANA was positive but the sjogren blood marker were negative.  I have no major organ involvement but have the usual dry eyes/mouth & some parts of my skin, joint pain/stiffness, brain fog, fatigue, muscle pain, PN, hypothyroid, sleep probs, gastro probs (altho these occurred way before dx, but are worse now) etc.

I would say I am not as bad as others on this forum and I manage my symptoms fairly well.  However, I have been wondering on/off for a while does this mean I have Sicca or Sjogren's and where does the connective tissue bit come into it??
 
Many Thanks in anticipation of your replies!! ;D

Take Care
Paula

voiceteacher

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #1 on: February 07, 2010, 10:04:02 AM »
If you have the positive lip biopsy, you have sjogrens.  Sicca syndrome simply means dry mouth and eyes.  However, that said - - everyone on this site has different degrees of illness.  Some with sjogrens have dry eyes and mouth and that's it.  Others have central nervous system involvement, joint pains, sleep disorders, thyroid disorders, etc.  Sjogrens effects everyone differently - - some bad some not so bad.  Also, many people on this site have more than just sjogrens since AI diseases often blend together - - many have lupus and sjogrens, RA and sjogrens, fibro, etc - -I have primary sjogrens and it's not nearly as bad as everyone elses.  Mine is labeled sicca syndrom on documents because my labs are normal but the dr treats it as sjogrens since he treats the symptoms and not the title.  Does that help??

voiceteacher

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #2 on: February 07, 2010, 10:05:03 AM »
also - my dr told me the sjogren bloodtest is only 40% accurate so with your lip biopsy and your ANA, I'm guessing it's sjogrens.

Voiceteacher

kim31072

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #3 on: February 07, 2010, 01:34:47 PM »
 Sicca syndrome and Sjogrens are the same thing-usually if you are diagnosed with another illness(ie Lupus)with Secondary sjogrens the drs will refer to the symptoms of eyes and mouth as Sicca(which is Latin for dryness)On its own its Primary Sjogrens and invovles more than the dryness issues(like with me I carry Primary SLE/with a SJS overlap-so mouth and eye issues are referred to often in my records as Sicca esp at the eye dr cause the Lupus is the one that dominates out of the two illnesses-for me)

If you carry no other AI illnesses and have a pos lip biopsy then your diagnosis should be Primary Sjogrens..but you may see "came in complaining of sicca issues in right eye-or sicca issues thought to be causing more cavities-in your records"that just means they are noting the dryness  not a seperate illness.here are some links to explain it a little better-I feel like my brain is plodding thru pudding today  ;)

http://www.medterms.com/script/main/art.asp?articlekey=8020

http://autoimmunedisease.suite101.com/article.cfm/sjoegrens_syndrome_basic_facts

jaygee

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #4 on: February 07, 2010, 01:49:57 PM »
I am sero negative and was diagnosed as "non-immunological sjogren's type sicca syndrome"    (whatever that means!!!!   ;D )

seren

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #5 on: February 07, 2010, 04:10:29 PM »
Thanks for all you replies, yes it has helped some, I am still just a little confused on the connective tissue front, is primary sjogren's a connective tissue disease or is it only that if another AI disease is present?

I have had one crazy day today...life is never straightforward  >:(

Thanks
Paula :D


inga

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #6 on: February 07, 2010, 04:52:41 PM »
Rheumatology is really a mess right now.  Doctors thought they could divide up the more common rheumatological diseases by the ENA, or extractable nuclear antigens.  As it turns out, the specific ENA's are not that helpful for many people with a positive ANA.  A fairly large percentage or people, with high ANA's, >1:640, still are negative when it comes to ENAs....so, yes, they have a connective tissue disease or autoimmune disease, but the type can only be assigned by symptoms.

I am in the same boat, a high >1:1280 ANA, but negative ENA, with +lip biopsy.  All the other tests they do for SjS, were + for SjS....such as Schirmers etc.  Am I convinced I have SjS?  No.  I don't think that Rheumatology has defined the criteria to make a spit of sense as of yet.

Sicca is just one constellation of symptoms of SjS.  If your ANA is substantially high, you have an autoimmune condition.  With a + lip biopsy, you can be classified as having SjS, which is an autoimmune disease.  Sicca is dry eyes and dry mouth, regardless of etiology.  Sicca may have nothing to do with autoimmune disease.

seren

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #7 on: February 07, 2010, 05:31:51 PM »
Yes Inga...there is alot of conflicting stuff out there, what you say makes sense and I already knew most of what you were saying, its just sometimes what I read does not always correlate with my research and what I have already been told by the specialists. 

For example, I just read on WrongDiagnosis.com that its only considered SjS when accompanied by another AI like rheumatoid athritis  ???...my ANA was 1:160 with a speckled pattern, so not very high but a definite positive. ENA, SSA, SSB all negative..my lip biopsy was positive with mild to moderate infiltration of the salivary glands..I also think my questions would receive different answers from different consultants...as if we dont have enough to deal with already ::)

Take Care
Paula ;D,

inga

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #8 on: February 07, 2010, 05:48:25 PM »
Our situation is similar.  I have a higher ANA, and it is speckled/nucleolar....but ENA is negative thus far.  + lip biopsy, but that can be + in any number of diseases.  I have been told a lot of different things.  I have researched this ad nauseum and not found any answers.  I do have neuropathy, which is pretty bad, as well as other organ involvement.  Sicca is troublesome, but not an issue, compared to the other things going on.  I receive IVIg.

Blue Kat

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #9 on: February 07, 2010, 05:54:42 PM »
I work in medical billing and if memory serves me correctly, Sjogren's and Sicca have the same ICD-9 (billing) codes, so in that sense they are interchangeable.

inga

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #10 on: February 07, 2010, 06:16:49 PM »
Sicca is simply dryness, I have PN by biopsy, gastroparesis, esophagaeal motility issues diagnosed by manometry, myopathy by biopsy, lung fibrosis on CT, and diastolic failure...plus the sicca syndrome.   This is why, I have a serious problem with the title Sjogren's Syndrome.  I certainly don't get IVIG for sicca!  No wonder I fight constantly to keep my treatment if insurance thinks I have Sicca!

inga

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #11 on: February 07, 2010, 06:40:59 PM »
This is exactly why this diagnosis is a mess.   Most people don't empathize much with some one with Sicca.  They go on the net, look up Sicca, and no wonder there is no mercy!  This is what insurance examiners do too...look up Sjogren's, see Sicca, look up Sicca, and wonder why they have a $8000 monthly bill for treatment of dry eyes and dry mouth! 

Patze

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #12 on: February 07, 2010, 06:54:55 PM »
I agree with you Inga.  When you mention SICCA to another doctor, you can almost see it in their face, hummm, dry mouth, eyes, and middle age, so? 

I fought that battle for the first several years (you don't want to know, and a very long story), now the rheumy has SJS on the record, and I don't have to explain it all the time (mostly, still working on the gastro guy, he's going to be a challenge!!  ;) :D).

Take care of yourself -

Patze
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Sero Negative Queen

inga

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Re: Sjogren's syndrome Vs Sicca Syndrome
« Reply #13 on: February 07, 2010, 07:13:34 PM »
Yup, and  you can look up a lot of other diseases, such as sarcoidosis, neurosarc, amyloidosis, and find, that 'sicca' is one of the symptoms....even the labial biopsies will show inflammation!  If you don't have a bright doc, it could be diagnosed as SjS.  The crossover of diseases is immense.  It is important not to jump to a diagnosis, until it is provable.  Any label is not a good idea, what if it is something different? 

PN is often responsible for gastric issues.....PN can come with SjS....but, is PN the reason for SjS or is SjS autoimmune....or is SjS just a constellation of symptoms like Sicca that can accompany some diseases that come with PN, or not?  Is autoimmunity responsible for neurological damage?  Is autoimmunity responsible for vasculitic damage that results in PN?  If it is vasculitic damage, how does it differ from Scleroderma Sine, other than by ENA results?  Can one have Scleroderma Sine that is seronegative and resembles ANA+, SjS?  If so, what is the difference?  Just a ICD9 code?    What if you are totally seronegative with + lip biopsy....can you be sure it isn't sarc?  Amyloidosis?  Drug induced?

None of this is simple....

Sicca does not indicate any systemic involvement and is not a good synonym for Sjogren's.  Sjogren's is now too confused and messed up to have any meaning.