Author Topic: Sjögren's syndrome  (Read 5984 times)

Vandemolen

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Sjögren's syndrome
« on: January 24, 2012, 08:04:49 PM »
Sjögren's syndrome (pronounced  /??o??r?nz/ shoh-grinz in English), also known as "Mikulicz disease" and "Sicca syndrome",[1] is a systemic autoimmune disease in which immune cells attack and destroy the exocrine glands[2] that produce tears and saliva.
 
It is named after Swedish ophthalmologist Henrik Sjögren[3] (1899–1986), who first described it.
 
Nine out of ten Sjögren's patients are women[4][5] and the average age of onset is late 40s, although Sjögren's occurs in all age groups in both women and men.[citation needed] It is estimated to affect as many as 4 million people in the United States alone, making it the second most common autoimmune rheumatic disease.[4][5]
 
Sjögren's syndrome can exist as a disorder in its own right (primary Sjögren's syndrome) or may develop years after the onset of an associated rheumatic disorder, such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, primary biliary cirrhosis etc. (secondary Sjögren's syndrome).[

Signs and symptoms
 
The hallmark symptom of Sjögren's syndrome is a generalized dryness, typically including xerostomia (dry mouth) and xerophthalmia (dry eyes), part of what are known as sicca symptoms. In addition, Sjögren's syndrome may cause skin, nose, and vaginal dryness, and may affect other organs of the body, including the kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system (distal axonal sensorimotor neuropathy) and brain.
 
Sjögren's syndrome is associated with increased levels in Cerebrospinal fluid (CSF) of IL-1RA, an interleukin 1 antagonist. This suggests that the disease begins with increased activity in the interleukin 1 system, followed by an auto-regulatory up-regulation of IL-IRA to reduce the successful binding of interleukin 1 to its receptors. It is likely that interleukin 1 is the marker for fatigue, however, increased IL-1RA is observed in the CSF and is associated with increased fatigue through cytokine induced sickness behavior.[6] On the other hand, Sjögren's syndrome is characterized by decreased levels of IL-1ra in saliva, which could be responsible for mouth inflammation and dryness. [7] Patients with secondary Sjögren's syndrome also often exhibit signs and symptoms of their primary rheumatic disorders, such as SLE, Rheumatoid Arthritis or Systemic Sclerosis.

http://en.wikipedia.org/wiki/Sj%C3%B6gren's_syndrome
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Vandemolen

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Re: Sjögren's syndrome
« Reply #1 on: January 24, 2012, 08:07:23 PM »
A lot of symptoms are the same as POIS. I looked up for diseasses with dry mouth and dry esophagus and I came out at Sjögren's syndrome. Patients with Sjögren's syndrome use Pilocarpine. Did anyone tried Pilocarpine? I have less POIS because of the desens. But a dry mouth and dry esophagus are my main symptoms now.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Stef

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Re: Sjögren's syndrome
« Reply #2 on: January 24, 2012, 10:56:50 PM »
Vandemolen,

What medications are you taking?

Are you still on Dr. Waldinger's desens program?

Maybe your symptoms are related to the meds/treatmets?

A lot of symptoms are the same as POIS. I looked up for diseasses with dry mouth and dry esophagus and I came out at Sjögren's syndrome. Patients with Sjögren's syndrome use Pilocarpine. Did anyone tried Pilocarpine? I have less POIS because of the desens. But a dry mouth and dry esophagus are my main symptoms now.

Vandemolen

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Re: Sjögren's syndrome
« Reply #3 on: January 25, 2012, 07:25:37 AM »
I had these things 10 years ago. This has nothing to do with the desens program.

My symptoms are just POIS-symptoms. A lots of others have these symptoms, like a dry mouth and a dry troath.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Vincent M

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Re: Sjögren's syndrome
« Reply #4 on: January 25, 2012, 01:37:39 PM »
I found this syndrome as well looking up what could be causing my burning eyes from POIS. The odd thing is that I don't get dry mouth at all so I'm not sure if my burning eyes are even caused by dryness. Now I think that my tear duct glands might be more sensitive to the inflammation that occurs during POIS than for most others here.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

Starsky

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Re: Sjögren's syndrome
« Reply #5 on: January 25, 2012, 03:33:52 PM »
A coexsistence of POIS and Sjörgen is very unlikely.

pois-sufferer

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Re: Sjögren's syndrome
« Reply #6 on: January 25, 2012, 11:07:04 PM »
I have always had what I can a pasty mouth, not really what I would consider dry, this has been around for about as long as POIS for me.

PS.

Vandemolen

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Re: Sjögren's syndrome
« Reply #7 on: January 26, 2012, 06:49:11 AM »
I use Xyzal (levocetirizine) every day. For years now. That causes a dry mouth too. And then the POIS. But Xyzal helps me against all kind of allergies and a bit against POIS.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

b_jim

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Re: Sjögren's syndrome
« Reply #8 on: March 22, 2012, 10:05:12 AM »
Interresting point : Goujerot-Sj?gren syndrome is linked to Raynaud's syndrome.

[ Off-topic about Raynaud :

Niacin might have positive effects against Raynaud, probably with its opposed action on vessels (vasodilation <=> vasoconstriction).
The problem is the main cause of Raynaud is unknown !

Stress or cold can be a trigger for Raynaud. I didn't find cases of Raynaud triggered by orgasm.
But beta-blockers can  cause Raynaud's phenomenon, and not help. The the role of adrenalin is not clear.
Other interesting point, anti-histamine claritin (with pseudoephedrine) is known to increase Raynaud syndrome...

]
« Last Edit: March 22, 2012, 10:36:44 AM by b_jim »
Taurine = Anti-Pois

Vandemolen

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Re: Sjögren's syndrome
« Reply #9 on: January 05, 2016, 07:45:30 PM »
I will have a test this month to see if I have Sjörgren Syndrome. I will let you know the result.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Disaster

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Re: Sjögren's syndrome
« Reply #10 on: February 03, 2016, 03:45:32 AM »
I have POIS and I was diagnosed in 2012 with Sjogren's Syndrome. My blood work was normal so I have a lip biopsy and a salivary paratoid gland nuclear scan and dry eye testing that confirmed I have it..if you have any question feel free to ask me

demografx

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Re: Sjögren's syndrome
« Reply #11 on: February 03, 2016, 07:32:55 PM »
Thanks, Vandemolen.
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.

Vandemolen

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Re: Sjögren's syndrome
« Reply #12 on: February 06, 2016, 08:56:13 PM »
I didn't do the test because it's painful and the chance that I have Sjorgen is small.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Vandemolen

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Re: Sjögren's syndrome
« Reply #13 on: November 07, 2017, 11:18:02 AM »
Did someone else have a test to see if he has Sjogren? There are a lot of symptons of Sjogren that are similair with POIS: dry mouth, dry bowels, dry nose, feeling sick.
I didn't do the test because it's painful and the chance that I have Sjorgen is small.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Disaster

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Re: Sjögren's syndrome
« Reply #14 on: November 08, 2017, 09:50:48 AM »
As you can see above I have Sjogren's. And no the test is not painful it takes 10 minutes and heals fast if you go to a doctor that does the lip biopsy a lot.

I do not think Sjogren's is at all like POIS. I hade POIS 25 years and Sjogren's 5 years. I never had dryness before 5 years ago. The only symptom similar is the fatigue. But POIS fatigue is caused after Orgasm and Sjogren's is all the time.