Author Topic: Anyone with sicca symptoms only?  (Read 786 times)

happylife

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Anyone with sicca symptoms only?
« on: April 05, 2018, 05:24:01 AM »
Hi

I heard from my doctor that the are two syndromes

1. Sicca syndrome: only dry eyes, mouth, nose.

2. Sjogren syndrome : dry eyes, mouth, nose (plus atleast joints pain or fatigue or some other systemic symptom)

My research have me an idea that sicca syndrome patients will develop sjogren syndrome ...... Its just a matter of time.

Can you tell me if there is anyone on this forum who has sicca syndrome only for a period of 5 years or more?


Also do share your opinion if these are really two different diseases or just the same disease with sicca syndrome being the first stage of sjogren syndrome.

Thanks

lizk

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Re: Anyone with sicca symptoms only?
« Reply #1 on: April 05, 2018, 05:28:06 AM »
Hello!

This is interesting. I was diagnosed in 2010 at age 29. I'm now 36, almost 37. I definitely fall into the sicca only category. My eyes and mouth are dry and the Evoxac helps. I take 200mg of Plaquenil a day, which may keep the joint pain and fatigue at bay since I don't experience those symptoms. I consider myself very lucky and dread menopause. I have a feeling that's when Sjogren's will take over my life.

I have no idea if there are 2 different diseases. I just know that my age probably helps me a lot with the symptoms.

Liz

happylife

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Re: Anyone with sicca symptoms only?
« Reply #2 on: April 05, 2018, 05:31:16 AM »
Hello!

This is interesting. I was diagnosed in 2010 at age 29. I'm now 36, almost 37. I definitely fall into the sicca only category. My eyes and mouth are dry and the Evoxac helps. I take 200mg of Plaquenil a day, which may keep the joint pain and fatigue at bay since I don't experience those symptoms. I consider myself very lucky and dread menopause. I have a feeling that's when Sjogren's will take over my life.

I have no idea if there are 2 different diseases. I just know that my age probably helps me a lot with the symptoms.

Liz

Hi Liz

What is the status of your ssa,ssb,ana,rf,esr,crp and lipbiopsy?

Your doctor has Diagnosed you as sicca or sjogren?


Thanks

Joe S.

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Re: Anyone with sicca symptoms only?
« Reply #3 on: April 05, 2018, 07:16:31 AM »
Interesting. I was told by the head of rheumatology for the University of Minnesota that the S in S.I.C.C.A. was for Sjogren's.
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markt

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Re: Anyone with sicca symptoms only?
« Reply #4 on: April 05, 2018, 07:37:30 AM »
Sicca isn't really an acronym per se, but is rather Latin for dryness. 

Sicca is a word derived from the Latin siccus, meaning dry. Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as sicca syndrome or sicca complex when there is no evidence of autoimmune disease present.


markt

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Re: Anyone with sicca symptoms only?
« Reply #5 on: April 05, 2018, 07:41:43 AM »
Hello!

I have no idea if there are 2 different diseases. I just know that my age probably helps me a lot with the symptoms.

Liz

Same here... Just from casual reading of ACR articles and abstracts, I suspect they are many different manifestations of a very similar/related Sjogrens pathogenesis (i.e. corruption of B-cells).  After all, the hallmark symptoms of Sjogrens are Dry Eyes and Mouth (and very often fatigue) first... sort of a triad.  But as you all know it can involve so, so much more (overlap with other CTDs).   Regardless, I have been wanted to ask my Rheumatologist this myself for some time.  As a "Sicca" type patient myself, I wanted to know what exactly it meant that I responded positively to Rituximab (I.e., whether it further confirmed my diagnosis of Sjogrens and whether it meant I would likely respond favorably to other targeted B-cell therapies being developed and trialed).
« Last Edit: April 05, 2018, 07:47:56 AM by markt »

Kris29

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Re: Anyone with sicca symptoms only?
« Reply #6 on: April 05, 2018, 10:57:16 AM »
Interesting. Are you thinking that maybe Sicca Syndrome is sometimes actually seronegative Sjogren's?

The symptoms that led to my diagnosis about three years ago were all systemic. I had no sicca symptoms whatsoever. But my blood work came back (and continues to come back) SSA-positive.

I did find out that I technically had mild dry eyes, but they hadn't been bothering me (they're worse now but still pretty mild). And I still have no symptoms of dry mouth. I guess I'm the opposite of the sicca-only presentation.

I once had a doctor tell me that he viewed the whole autoimmune family to some extent as one disorder and that doctors put patients into categories the best they can based on their blood work and symptoms. That was his explanation for the huge variation in rheumatology between patients with the "same diagnosis."

I understand that doctors may hesitate to put a patient under the autoimmunity "umbrella" if they don't see any evidence of autoimmunity (blood work, lip biopsy), so maybe sometimes Sicca Syndrome is a placeholder diagnosis until they see more evidence that the dryness is caused by autoimmunity?

« Last Edit: April 05, 2018, 11:05:31 AM by Kris29 »

markt

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Re: Anyone with sicca symptoms only?
« Reply #7 on: April 05, 2018, 11:54:40 AM »

I once had a doctor tell me that he viewed the whole autoimmune family to some extent as one disorder and that doctors put patients into categories the best they can based on their blood work and symptoms. That was his explanation for the huge variation in rheumatology between patients with the "same diagnosis."

I understand that doctors may hesitate to put a patient under the autoimmunity "umbrella" if they don't see any evidence of autoimmunity (blood work, lip biopsy), so maybe sometimes Sicca Syndrome is a placeholder diagnosis until they see more evidence that the dryness is caused by autoimmunity?

I think that is what I was trying to get out, except you said it (or your MD did) much better lol.  I am sort of inclined to think that as well.  Especially considering that current Biologics and Peptide fragments being trailed tend to be beneficial for multiple AI diseases.  So who knows... maybe is it is likely that AI diseases, at least at some level, share a similar pathogenesis.... hence similar treatments being developed.  I.e. ImmunePharma filing adittional patents for Lupazor for Sjogrens, even though it was initially developed for Lupus. 

"...In addition, we strengthened the intellectual property of our lead asset by filing patents on the dosing of our drug for lupus and identifying a potential second indication for our lead asset by filing a use patent for the treatment of Sj?gren?s syndrome (SS) based on pre-clinical in vitro data..."

Carolina

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Re: Anyone with sicca symptoms only?
« Reply #8 on: April 05, 2018, 03:13:00 PM »
What I understand is that SICCA is the diagnosis when you have dryness without the blood markers (caused by autoantibodies) for Sjogren's.

So I have SICCA in my record as an alternate diagnosis, and since I have no blood markers for Sjogren's, I can't actually have Sjogren's.  Tho' sometimes those who have negative blood work, develop positive blood work at a later date.  Never say never.

I started with 'only' the dry eye/dry mouth symptoms that are diagnosed as SICCA, in the absence of autoantibodies and a diagnosis of Sjogren's.  And that is what I treated.

However, I have progressed with more and more of the co-conditions of that can accompany Sjogren's: Interstitial Cystitis, Meniere's, Anemia, Blepharitis, and many neurological problems including profound peripheral neuropathy, severe small fiber neuropathy, and neuropathies of my esophagus (Achalasia) and intestinal tract (SIBO). 

I am also diagnosed with a Primary Immune Deficiency, labeled CVID, and have IVIG infusions every 4 weeks.  There are members here with both Sjogren's AND my Immune Deficiency.  There are also many members here with other even more rare Immune Disorders.

So I have some of the the 'bigger picture' conditions that sometimes complicate Sjogren's Syndrome.

I do NOT have other true autoimmune conditions like Lupus, Hashimoto's, RA, Psoriatic Arthritis, and the myriad AI 'friends' that are often part of the Sjogren's party.  Many here do have those other AI conditions.  In most cases, then, Immune Suppressants and the new biologicals are often used to fight the damage done.

I feel like I have more than enough, thank you. 

The KEY is to treat the symptoms.  A specific diagnosis may be required by some insurance in order for you to be eligible for some drugs, usually the Immune Suppressants.  But symptom treatment is very important and involves both home-based treatments (sprays, drops, Mucinex, humidifier, lotions, creams, compresses and many supplements) and one of the moisture medications (Evoxac/Salagen or their generics) and perhaps Restasis eye drops by prescription,

Regards, Elaine
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lizk

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Re: Anyone with sicca symptoms only?
« Reply #9 on: April 06, 2018, 05:43:38 AM »
What is the status of your ssa,ssb,ana,rf,esr,crp and lipbiopsy?

Hi there,

My SSA is > 8.0.
SSB < 1.0
My ANA is negative.
RF is < 14.
ESR is 2.
CRP is 0.3
I've never done a lip biopsy.

I have higher IgG (337) and a very low WBC count (2.9 - 3.1 usually). Otherwise a lot of my bloodwork doesn't seem to show much Sj activity, aside from off the charts Primary Sj antibodies.

I was technically diagnosed with Primary Sjogren's in 2010. My current rheumatologist has Sicca Syndrome written on my latest paperwork. I thought maybe they were interchangeable.

Hope these details help!

happylife

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Re: Anyone with sicca symptoms only?
« Reply #10 on: April 06, 2018, 06:27:10 AM »
Hi Liz

If ur rhumy has written sicca syndrome....i guess he also thinks that some sicca patients may never develop other organ involvement....so next time you meet him you can ask how much percentage of sicca patients go on to develop sjogren syndrome in future....

Thanks

swf994

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Re: Anyone with sicca symptoms only?
« Reply #11 on: May 10, 2018, 07:40:33 AM »
"Can you tell me if there is anyone on this forum who has sicca syndrome only for a period of 5 years or more?"

It seems closer to 50-55 in my case, and it hasn't gotten any worse. Figure that one out...  :)

But there have been no tests. I do have fatigue (which became noticeable 15-20 years later), but I don't know if I can attribute it directly to Sjogren's.

I have allergies, which are made several times worse and painful by the dryness, which in turn I think often stresses me to the point of fatigue. I also don't sleep well.
« Last Edit: May 10, 2018, 08:35:15 AM by swf994 »

Emics

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Re: Anyone with sicca symptoms only?
« Reply #12 on: May 11, 2018, 04:35:55 AM »
Hi. I think I have only dryness (dry mouth and dry eye). I say "I think" because I am not sure if I have fatigue or not. It is not devastating fatigue of course, but I remember myself with a chronic fatigue since my teens. Now I am 41. So I don?t know how is to "live" in another body, I don?t know how people without a chronic condition feel. So I am not sure. I do the same things as everybody, I have a very demanding job, but it is like everything is hard for me. But I have gotten used to it so I am sure which is objetive or subjective.

I got diagnosed in 2016 because I lost a pregnancy in second trimester due to atrioventricular block in the fetus. My SSA is high. Previously I had dry mouth, parotiditis and dry eye symptoms (corneal ulcers), but doctors didn?t find it important.

But I don?t have pain or other symptoms. So I imagine that if I hadn?t lost that pregnancy or I had never get pregnant, I would have been living with that symptoms without a diagnosis. Maybe the diagnosis would have become after my menopause, like many women, when the symptoms get worse. Or maybe I will develop systemic symptoms in the next years, who knows.

cccourt1942

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Re: Anyone with sicca symptoms only?
« Reply #13 on: May 12, 2018, 10:05:18 AM »
I honestly believe all of us have suffered sicca symptoms only at one point in this progressive disease.  It's just which part  the dryness affects initially which makes you miserable.  Mine was my eyes.  It didn't even alarm me when I was unable to produce tears any longer...about 30 years ago.  This year it will be 5 years since I was diagnosed.  By the time the oral dryness hit...about 10 years ago, I began to suffer sialadenitis....pretty often, pretty severe...and still didn't relate the dry mouth to sialadenitis.  We won't even discuss the otolaryngologist who treated me for it for 3 years...prior to SjS dx. 

Hope that makes sense to you.
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Carolina

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Re: Anyone with sicca symptoms only?
« Reply #14 on: May 12, 2018, 03:35:43 PM »
I did some Google Searches and it is clear that Sicca is a term that was used more often in the 20th Century, and has more recently been used interchangeably with Sjogren's Syndrome.  I found many journal articles describing the Sicca Symptoms of Sjogren's Syndrome.

I would say that Sicca generally refers to the dry eyes and dry mouth aspects, often with a Sjogren's Diagnosis.

Googled Sicca:


https://www.medicinenet.com/script/main/art.asp?articlekey=8020

Sicca syndrome: An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.

There is a great preponderance of females. About 90% of Sjogren syndrome patients are female, usually in middle age or older.

Sjogren syndrome is an inflammatory disease of glands and other tissues of the body. Inflammation of the glands that produce tears (the lacrimal glands) leads to decreased tears and dry eyes. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth. The syndrome can consequently be complicated by infections of the eyes, breathing passages, and mouth.

Googled Sjogren's Syndrome:

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.

The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva.

Again, the term Sicca seems to describe the symptoms of dry eyes and dry mouth, and Sjogren's Syndrome is a diagnosis usually involving a wider range of symptoms and often based on blood test results indicating the autoimmune basis of the conditions.

Long ago I began to care less about diagnosis and terms, and more about relief of symptoms.  However when I was diagnosed with a Primary Immune Deficiency Disorder, specifically CVID, and began having IVIG infusions every four weeks, I was ecstatic at finally having a true diagnosis that explained my symptoms.  So I know how the quest for validation through medical testing can mean so much to us.

It is important to understand that medical science does not know what we need to know about the Immune System.  And even when the Immune System is more clearly understood, the ability to cure or stop Immune disorders is still not known.

As my Immunologist says:  We use the tests we have, not the tests we need.

Regards,  Elaine
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