Q on Sicca Remission. Also: Allergies, & Undiff. Connective Tissue Disorder

[alwaysimproving]

Hello all,

Been reading a lot of articles lately.

I. Sicca Remission
Question: Have you ever experienced or have heard of others experiencing full sicca remission?
I myself had 3 months in between with no symptoms at all after having very severe dry mouth back in December.
I also have a friend whose mother claims that her symptoms are mostly in remission after following an Autoimmune Paleo diet and contacted a researcher whose students are also mainly in remission with proper management.
Now I'm fluctuating a lot.

II. Seronegative and atypical patients alert!

If you are in the process of hunting for a diagnosis this may pertain to you.
I have been doing a lot of research and discussing with some physicians.
I want to share any hope that I find because it may help you maintain a positive mentality.

Number One --- Undifferentiated Connective Tissue Disorder

If you do not meet all the critera for Sjogren's but strongly suspect it, do not automatically assume that you have Sjogren's.
Have healthy trust in your physicians even if they are reluctant to give you a Sjogren's diagnosis.

I have recently come across what may be called Undifferentiated Connective Tissue Disorder.
This is a term that is used to classify patients who meet some but not all of the symptoms of a DCTD, and have relatively stable symptoms.
Sjogren's is a Differentiated Connective Tissue Disorder (DCTD).

If you have relatively stable and moderate symptoms, do not automatically assume that they will jump to the worst case scenarios and horror stories for Sjogren's.
This is true whether or not you truly have the condition. Consider that with UCTD,

Good news about UCTD:
All studies agree that with UCTD, the majority of patients have STABLE conditions that never evolve into a more severe case. This is especially true if your symptoms have been relatively stable for two or three years.
A small percentage will go on to develop Sjogren's, or other rheumatic diseases.
The great news is that 10-20% of these patients experience complete remission in the first year or two of diagnosis.

More :
https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp
http://www.ncbi.nlm.nih.gov/pubmed/12846049


Number Two --- Contact Allergy
Here is a very interesting clinical case study I stumbled upon:
"Contact allergy masquerading as seronegative Sj?gren's syndrome."
According to the full article, the 58 year old patient was diagnosed in 2010 with seronegative Sjogren's based on the American-European classification system.
She had the dry eyes and dry mouth, the fatigue and joint pain. She had some mild parotid swelling as well. Only in 2012 after seeing multiple specialists was it identified that she had allergies to: balsam of peru, fragrance mix, benzoic acid, sorbic acid, and hosue mites. To quote: "On avoidance of these allergens, she had complete resolution of skin, eye, and oral symptoms...she managed to stop all treatment. Ingestion of a cola drink containing flavorings, benzoic acid, and sorbic acid caused a transient recurrence of the oral symptoms

If you have never seen an allergist it may be worthwhile to discuss with your physician the possibility for allergic testing. Especially if you developed symptoms after moving to a new place or changing lifestyle habits.

http://www.ncbi.nlm.nih.gov/pubmed/24119527

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Again, I'm targeting the latter two parts of this post to those who are seronegative or are in the process of being diagnosed.
Even if it turns out that you have Sjogren's, it cannot be stressed enough the importance of hopefullness.

We will see significant discoveries in dealing with autoimmune disorders in the upcoming years.
Our understanding of the immune system has greatly increased in the past two decades.

I truly believe that we are on the cusp of creating REAL treatments for autoimmune conditions especially. Stem cell and gene therapies will unlock many doors. Even with those with severe glandular destruction should have hope! There is research being done on tissue and glandular regeneration.

[JoanElizabeth]

I actually was diagnosed with UCTD but only for a couple months. When I first transitioned to an adult rheumatologist from from peds in March he changed my diagnosis from JA to UCTD but only until my other test came back. After my lip biopsy was positive I ended up with a Sjogren's diagnosis

[alwaysimproving]

Joan, if I may ask, what was your lab work like? Symptoms?

[JoanElizabeth]

Lab Work:
ANA- 1:320 (speckled I believe but it was a while back)
Some CBC abnormalities (low counts-WBC, Leukocytes, Platelets, Homocrit, and Hemoglobin I think)
No other abnormal blood test
Positive Lip Biopsy

Symptoms-
Joint Pain (mostly large joints)
Morning Stiffness
Possible Mild Uveitis at 17 (long story)
Fatigue
Low Grade Fevers
Mouth Ulcers
Celiac Disease
Autonomic Neuropathy
Severe Gastroparesis
         Vomiting
         Nausea
         Stomach Pain
         Bloating
         GERD
Postural Orthostatic Tachycardia Syndrome
         Blood Pressure Drops
         Tachycardia
         Pre-syncope and syncope (fainting)
         Heart Palpitations
         Dizziness
         Lightheadedness
Dry Mouth

I think I got everything haha

[jazzlover]

Joan .. please read:

http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/

[JoanElizabeth]

JazzLover- Due to my POTS and gastroparesis diagnosis I have looked in to MCAD before but I really do not fit it especially when you account for my positive lip biopsy

[Sharon]

Alwaysimproving- First of all, I want to commend you on your positive thinking.
We really do need more positive posts and HOPE on these boards!
Thanks for all the informative links.
The description in the second half of your post:
"She had the dry eyes and dry mouth, the fatigue and joint pain. She had some mild parotid swelling as well".- That describes my SJS-attributed symptoms! I also have various allergic symptoms though negative on all allergy testing. I've been pondering lately if MCAD could account for all these SJS symptoms as well. However, while I am sero-negative for SJS I do have a positive ANA and RNP + RNPa ....so I wonder.

[LilliaT]

This is fascinating.  For the past few weeks I have wavered between complete despair/terror/dread on the one hand, and an irrational hope that there is some other explanation for my dry eyes and dry mouth -- something that doesn't involve inevitable physical degeneration and pain.  The hope has seemed irrational and unfounded, and I've tried to keep it in check.  But it's so much better than the despair/terror/dread -- which is almost paralyzing at times, and completely unproductive. 

I've spent so much time reading and trying to learn about Sjogren's.  And it is hard to escape the feeling that Sjogren's syndrome takes so many forms (and manifests in so many different ways) that there must be other explanations or diagnoses for at least some of the varying symptoms.  Your post opens up a whole new way of thinking about these issues for me.  And it is a very, very welcome reminder that optimism (realistic but still hopeful) is a much better way to deal with these issues than the soul-sucking dread that I previously kept falling into.

[Nymph]

Hi AI -

On my record it says undifferentiated inflammatory autoimmune arthritis. This is a variation on UCTD, obviously bringing out the arthritis aspect. That is due to my being sero-positve for RA but with Sjs type symptoms. However, I have been able to achieve good control of my disease and am pretty stable several years on. Also, my sicca symptoms are well controlled by NAC and DHEA. My rheumy thinks I have Sjs. I'm just thankful that I have a slow-moving, stable, whatever-it-is. There is still planty of grey area in diagnoses. I am thankful that I have not progressed to RA and research suggests that I may not. It is possible to come to peace with not knowing "for sure". And it's not always the worst case scenario, even if you get the dreaded disease, whatever your dreaded disease is. Life is good.

Cheers

[Wal]

Great post. Sicca symptoms are my only symptoms. Negative blood work on everything. I've had my symptoms for about 6 months now. They are pretty consistently mild to moderate with some severe peaks here and there. However, I've also had a few days in a row with no symptoms. I'm trying to find the triggers. Anyways, this post was so positive. Thank you!

[jazzlover]

JazzLover- Due to my POTS and gastroparesis diagnosis I have looked in to MCAD before but I really do not fit it especially when you account for my positive lip biopsy

-
That's good .. but keep in mind that some of us have both.

What caused me to post that for you was the POTS .. So many with MCAD also have POTS and sometimes EDS.