Author Topic: Anyone with sicca symptoms only?  (Read 785 times)

Pepita933

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Re: Anyone with sicca symptoms only?
« Reply #15 on: May 14, 2018, 12:11:33 PM »
Anyone with sicca symptoms only, I think should feel VERY lucky.  My son's (a quadriplegic ) best advice is to never anticipate.  We don't know what or if anything will be next.  Live the best life you can every day.

Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

Scottietottie

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Re: Anyone with sicca symptoms only?
« Reply #16 on: May 15, 2018, 03:09:59 PM »
hi  :)

In the UK when you get a Sjogren's diagnoses they hand you a leaflet (well my hospital did) that tells you what to expect. They say that 70% of people suffer dry eyes and dry mouth and nothing else. I find this hard to believe but maybe it is the 30% that suffer more - end up in here![

They definitely give the impression that not everybody gets really ill, so even if the percentages were reversed - some people would have manageable symptoms.

Take care Scottie  :)
http://sjogrensworld.org/   (our home page)
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happylife

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Re: Anyone with sicca symptoms only?
« Reply #17 on: May 19, 2018, 08:41:36 PM »
Hi scottie

70% suffer only dry eyes and mouth is incorrect.  Pfb a research paper from Netherlands which says that sjogren is a heavy burden disease. It says 80% of patients will be unable to work. This clearly shows its mainly due to fatigue and joints pain which are debilitating.

That paper goes onto say that most people develop multiple diseases over a period of 10 to 20 years.

Bottom line : sjogren is slowly progressing, serious condition causing multiple diseases causing the patient to become unemployed.

".  Almost all patients suffered from dry mouth (n = 183; 94%), dry eyes (n = 183; 94%) and fatigue (n = 166; 85%). Fatigue was the most severe symptom in 78 (40%) patients. Arthralgia and/or tendomyalgia was present in 148 (76%) patients "


https://academic.oup.com/rheumatology/article/48/9/1077/1785654

Thanks
« Last Edit: May 19, 2018, 08:48:53 PM by happylife »

Carolina

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Re: Anyone with sicca symptoms only?
« Reply #18 on: May 20, 2018, 02:19:06 PM »
Dear happylife,

I do think you are probably right (I will read the article that you posted).

I know this:  I was diagnosed with 'Sjogren's' in 2002, based on symptoms (no positive blood work, no lip biopsy).  Fast forward 8 years, still no positive blood work, but so many damaging conditions, especially neurological damage that left me disabled.

As it turns out my Immune System doesn't use autoantibodies to damage my own body, but probably cytokines (a 'normal' biochemical that is part of the infection fighting system our body uses to protect us) incorrectly deployed to attack and damage organs/systems of my body.

So I don't have true Sjogren's, and yet I have the same damages to  my body, and the horror show started with dry eyes/dry mouth.   

I had had, of course, many signs and symptoms of a disordered Immune System all of my life, but the rampage didn't start until 2002 (when I was 60).

I had no idea what lay ahead for me.  And I'm glad I didn't know how bad it would become, although it would have been helpful to realize that what was happening wasn't 'my fault'.   I was often treated as a difficult woman and perhaps someone who was medicalizing everything. 

This forum saved my sanity, and the diagnosis of a Primary Immune Deficiency and my Duke Immunologist gave me absolute validity that my Immune Disorder is, in fact, the unifying diagnosis that explains everything that has happened and is happening to me.

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil