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Old 08-08-2016, 12:13 AM #31
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Mskari85, for a long time RA and OA have been thought of as separate conditions - the immune system is involved in RA but not in OA.

However, this is a bit simplistic - immune system proteins, notably some of the complement proteins, seem to be involved in the inflammatory response in OA - see Identification of a central role for complement in osteoarthritis.

I don't know if this has led to improved therapy but it is something that you could discuss with your rheumatologist.
Kiwi I've read this link and found it very interesting. I believe methotrexate has been used to treat people with OA to good effect over the past few years so this makes sense of the inflammatory overlap.

Re the role played by compliment in autoimmunity - I did just want to ask if you know what the significance of my raised C3 and C4 might be? I asked a GP who said probably my severe yeast infection but I'm not convinced. I know that these compliments are usually significantly low rather than high with Lupus but have got no further with my research into raised compliment levels. Could it relate to OA do you know?
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Old 08-08-2016, 02:20 AM #32
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Mat, I know about complement proteins C3 and C4 in a research but not clinical context.

They are both on the list of acute-phase response proteins, same as CRP - proteins whose levels are elevated in an acute or chronic infection.

Often a chronic infection has an inflammatory aspect so maybe the possible inflammatory aspect (not the same as an infection) of your primary Sjogren's might explain your elevated C3 and C4 levels - your CRP level is also high(?).

This fits with the inflammatory aspect of OA - C3 and C4 could be elevated in it but PubMed does not shed any light on this.
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Old 08-08-2016, 02:37 AM #33
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Mat, I know about complement proteins C3 and C4 in a research but not clinical context.

They are both on the list of acute-phase response proteins, same as CRP - proteins whose levels are elevated in an acute or chronic infection.

Often a chronic infection has an inflammatory aspect so maybe the possible inflammatory aspect (not the same as an infection) of your primary Sjogren's might explain your elevated C3 and C4 levels - your CRP level is also high(?).

This fits with the inflammatory aspect of OA - C3 and C4 could be elevated in it but PubMed does not shed any light on this.
Thanks for clarifying about compliments Kiwi. Brain shot from insomnia but yes my CRP and PV (Plasma Viscocity) were all high at the last rheum clinic two months ago when compliments were tested. GP was right about the yeast infection being a possible cause but the symptoms have continued regardless of next swab being negative for candida. And my inflammatory markers are always between raised and high. The only time they come down is with immunesuppression or steroids. I'm blaming Sjogren's for everything now - which feels rather good!
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Old 08-10-2016, 03:57 PM #34
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Its so great to have an answer! MAT I'm truly jealous. Not to steal your post but a PET/CT found old calcified nodes which my neuro and a pulmonolgist said were highly suspicious for old sarcoidosis. Im wondering if that was the trigger for all of my nasty cranial and nerve stuff I have going on. Best of luck, prayers answered, now you can forge on with peace of mind. And I am just the opposite of you - low c3 and c4 complements!
L
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Old 08-10-2016, 04:14 PM #35
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Its so great to have an answer! MAT I'm truly jealous. Not to steal your post but a PET/CT found old calcified nodes which my neuro and a pulmonolgist said were highly suspicious for old sarcoidosis. Im wondering if that was the trigger for all of my nasty cranial and nerve stuff I have going on. Best of luck, prayers answered, now you can forge on with peace of mind. And I am just the opposite of you - low c3 and c4 complements!
L
Hey low C3 and 4 is much more relevant than my raised ones L. I think I have had spells of Sarcoidosis when the P Sjogrens started - years of dry coughing fits lasting for hours and comimg on randomly with no explanation apart from probable reflux. I'm almost jealous of myself after five years of feeling tied to a disease I never fully related to.

I will post this on the main forum for others but I thought this Arthritis Research diagnostic tool was particularly interesting. I've had years of wondering what was causing my high ESR and CRP when I had very little joint pain. Then today I read this I learn something everyday. Apparently most people with PSJS have a very high ESR often but, unlike with RA, this doesn't correspond with the level of disease activity. At last I understand why my levels are often so high despite no swollen joints.

"People with Sjögren’s syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren’s syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis."

http://www.arthritisresearchuk.org/a...diagnosis.aspx
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Old 08-10-2016, 04:27 PM #36
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Believe me MAT, i know low serum complements are weighty and I PRAY for positive lupus tests just to have an answer, thats sad.

I have so many central nervous symptoms and oligoclonal bands in my csf which show inflammation/immune activation there - ironically Sjogrens (and sarcoid) are two of the neuro presentations that can cause this as well as CIDP which I also have.
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Old 08-10-2016, 04:49 PM #37
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Believe me MAT, i know low serum complements are weighty and I PRAY for positive lupus tests just to have an answer, thats sad.

I have so many central nervous symptoms and oligoclonal bands in my csf which show inflammation/immune activation there - ironically Sjogrens (and sarcoid) are two of the neuro presentations that can cause this as well as CIDP which I also have.
I relate to your sad. I too have paired oligloclonal bands in my CSF. Have you had a lip biopsy done yet? you obviously have an autoimmune process going on so it really is just a matter of leaving no stone unturned in order to find it. Persistence is the name of the horribly long game.
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Old 09-16-2016, 01:10 AM #38
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Hi MAT,
I'm glad you finally got good doctors that takes you seriously and I hope that with the Sjs diagnosis you would be able to get proper treatment.

Regarding rituximab, I got it now because it was found helpful when I had it for Lymphoma a few years ago. I found very little documentation about its effect on SFN and POTS. For what it's worth, in my case it helped tremendously my POTS, fatigue and brain fog, and it somewhat improved my other SFN sensory & autonomic symptoms. It took a while to work, the main effect lasted for 2-3 months and then started to fade. I got a second course and waiting hopefully…
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Old 09-16-2016, 02:30 AM #39
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Hi MAT,
I'm glad you finally got good doctors that takes you seriously and I hope that with the Sjs diagnosis you would be able to get proper treatment.

Regarding rituximab, I got it now because it was found helpful when I had it for Lymphoma a few years ago. I found very little documentation about its effect on SFN and POTS. For what it's worth, in my case it helped tremendously my POTS, fatigue and brain fog, and it somewhat improved my other SFN sensory & autonomic symptoms. It took a while to work, the main effect lasted for 2-3 months and then started to fade. I got a second course and waiting hopefully…
Thanks StillHoping - I'm glad it worked so well. My UK cyber friend is on Rituximab for her Sjogren's and it made a big difference to her as well but the effects have dimmed now and she's waiting impatiently for a rheumatology appointment having had hers postponed by three months because of staff shortages. We will see. I'm actually minded that I'd prefer to try Cellcept for now unless I turn out to have lymphoma - which is looking unlikely I'm glad to say!
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Old 06-10-2021, 05:39 PM #40
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Default What about Chronic Inflammatory Response Syndrome?

I read your post with some interest, as I am looking for a thread that discusses CIRS (Chronic Inflammatory Response Syndrome). I have been looking for answers to my idiopathic PN diagnosis for a few years. While researching a health problem for another family member, I stumbled across mold illness and the go-to website called ************* and Dr. Shoemaker. The biotoxins in mold found in water damaged buildings will cause an array of inflammatory processes including peripheral neuropathy, but only in about 20% of the general population who are genetically identified. The symptom page of the ************* site lists the many inflammatory responses identified. It turns out I had a few other symptoms that I was just living with, like leaky gut and MARCoNS.
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