Post Orgasmic Illness Syndrome (P.O.I.S.)

POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: Vandemolen on January 24, 2012, 08:04:49 PM

Title: Sjögren's syndrome
Post by: Vandemolen 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
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: Stef 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.
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: Vincent M 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.
Title: Re: Sjögren's syndrome
Post by: Starsky on January 25, 2012, 03:33:52 PM
A coexsistence of POIS and Sjörgen is very unlikely.
Title: Re: Sjögren's syndrome
Post by: pois-sufferer 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.
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: b_jim 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...

]
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: Disaster 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
Title: Re: Sjögren's syndrome
Post by: demografx on February 03, 2016, 07:32:55 PM
Thanks, Vandemolen.
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: Vandemolen 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.
Title: Re: Sjögren's syndrome
Post by: Disaster 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.
Title: Re: Sjögren's syndrome
Post by: Muon on November 08, 2017, 10:33:31 AM
Disaster,

Did they find clustered lymphocytes around your salivary glands and damage to the glands?
Title: Re: Sjögren's syndrome
Post by: Disaster on November 08, 2017, 12:36:27 PM
My lip biopsy was positive for Sjogren's
Title: Re: Sjögren's syndrome
Post by: Muon on November 10, 2017, 12:59:14 PM
I understand it was positive but did your doctor tell you any details?
Title: Re: Sjögren's syndrome
Post by: Disaster on November 11, 2017, 10:49:36 PM
The report says I have a Focus score of 1.0. And it says that score is equal to lymphocytes/50 cells. Something like that.
Title: Re: Sjögren's syndrome
Post by: Muon on December 12, 2017, 01:28:42 PM
Ok thanks, the focus score is all I need. This means you have infiltration of lymphocytes. IgG4-RD could play a role in this, that's why I was curious about it. This focus score could also fit IgG4 involvement. https://www.ncbi.nlm.nih.gov/pubmed/25100215

''IgG4-related disease (IgG4-RD), formerly known as IgG4-related systemic disease, is a chronic inflammatory condition characterized by tissue infiltration with lymphocytes and IgG4-secreting plasma cells'' https://en.wikipedia.org/wiki/IgG4-related_disease

Can you check out your IgG4 levels? I'm curious about this and may shed some light on POIS. You need an IgG4 test with a cut-off value above the upper reference limit of 135 mg/dl. IgG4 tests with high cut-off limits are hard to find. I have elevated IgG4 myself and wonder if more POIS patients got this as well.
Title: Re: Sjögren's syndrome
Post by: Disaster on December 20, 2017, 07:40:52 AM
I haven't been tested for IgG4 only IgG subclasses
Title: Re: Sjögren's syndrome
Post by: Muon on December 20, 2017, 11:35:05 AM
IgG 1-4 are the IgG subclasses. They have probably ruled this out then.
Title: Re: Sjögren's syndrome
Post by: Disaster on December 20, 2017, 11:04:00 PM
I have low IgG subclasses 1 and 3, normal 2 and 4.
Title: Re: Sjögren's syndrome
Post by: ThisType on January 21, 2018, 10:19:03 PM
Sjogrens was one i was tested for as my symptoms were somewhat similar. The medical blood screen indicated I did not have sjogrens. I realized after a time that what was causing my poor speech was actually slight swelling of my tongue and lips (which is part of my POIS symptoms). I've documented elsewhere on a different thread, but specifically what solves these symptoms for me is choline (eggs over easy, Thorne choline tablets both work). The Thorne tablets work in about half an hour to an hour and last for a day or so.
Best,
TT



Title: Re: Sjögren's syndrome
Post by: Disaster on January 23, 2018, 04:22:56 AM
Blood antibodies are only positive in half of Sjogren's and even then further positive testing is needed because the Sjogren's antibodies are found in other conditions like Lupus as well. But negative blood does not by any means rule our sjogren's
Title: Re: Sjögren's syndrome
Post by: Muon on January 15, 2020, 12:54:20 PM
Migration happens prior to infiltration. Chemokines mediate chemotaxis. I bet you probably have some sort of chemokine elevated Disaster.
Title: Re: Sjögren's syndrome
Post by: Muon on February 13, 2020, 09:50:29 AM
Chemokine release from mast cells attracting lymphocytes towards certain glands that are involved in sjogren's?
Title: Re: Sjögren's syndrome
Post by: swell on February 18, 2020, 03:15:26 PM
Hello Vandermolen, I believe you, completely.  I dont like to give this advice, but I am going to:

I believe, dry skin, thinner epithelium layer, breaking apart mucus membranes, these are halmarks (to me) for POIS.  Sjogrens has same symptoms.  Chances are your doc will suspect Sjogrens, however upon advanced testing (i.e. anti-bodies), Sjogrens will be ruled out.  I believe, our thinner epithelium is also the cause for POIS, skin and brain symptoms - skin symptoms being, dry eyes - I used to even get growth under eyelids, dry esophagus (making me susceptible to sore-throat, various allergies), weaker muscles, etc.  And brain symptoms being brainfog, emotional state, anxiety, speech, etc.

I am mostly POIS free now, and trying to get off the too many supplements I take.  I believe, you have to do 2 things:

a) change your diet.  Eat high-fat (healthy fats - plenty of them), and simultaneously reduce your Carbs to minimum. 
b) take 'growth' supplements to help your mucus membranes heal, gut lining grow/heal, epithelium to thicken. 
c) resolve your digestion issues.  Betaine HCL, Digestion enzymes, Bile Salts (purified).

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.
Title: Re: Sjögren's syndrome
Post by: Disaster on March 09, 2020, 05:25:08 PM
Hello Vandermolen, I believe you, completely.  I dont like to give this advice, but I am going to:

I believe, dry skin, thinner epithelium layer, breaking apart mucus membranes, these are halmarks (to me) for POIS.  Sjogrens has same symptoms.  Chances are your doc will suspect Sjogrens, however upon advanced testing (i.e. anti-bodies), Sjogrens will be ruled out.  I believe, our thinner epithelium is also the cause for POIS, skin and brain symptoms - skin symptoms being, dry eyes - I used to even get growth under eyelids, dry esophagus (making me susceptible to sore-throat, various allergies), weaker muscles, etc.  And brain symptoms being brainfog, emotional state, anxiety, speech, etc.

I am mostly POIS free now, and trying to get off the too many supplements I take.  I believe, you have to do 2 things:

a) change your diet.  Eat high-fat (healthy fats - plenty of them), and simultaneously reduce your Carbs to minimum. 
b) take 'growth' supplements to help your mucus membranes heal, gut lining grow/heal, epithelium to thicken. 
c) resolve your digestion issues.  Betaine HCL, Digestion enzymes, Bile Salts (purified).

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.

Some theories I see that people come up with are so strange. I have POIS and Sj?gren?s. What makes you think ?thin epithelium? is to blame? That is just an odd thing to blame especially without proof..
Title: Re: Sjögren's syndrome
Post by: Muon on January 06, 2021, 04:26:36 PM
Fatigue in primary Sjögren's syndrome (pSS) is associated with lower levels of proinflammatory cytokines: a validation study. (https://forums.phoenixrising.me/threads/fatigue-in-primary-sjoegrens-syndrome-pss-is-associated-with-lower-levels-of-proinflammatory-cytokines-a-validation-study.76838/)

Could the fatigue in Disaster caused by POIS be a depression of cytokine levels?
Title: Re: Sjögren's syndrome
Post by: mike_sweden on January 08, 2021, 10:41:33 AM
Sj?gren was a Swede! :-)