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echoes long ago 12-01-2016 09:54 PM

Autoimmune testing
 
A recent blood test has shown an ANA of 1:320 with a homogenous pattern. I get tested every year or so because of my toxic exposures at the world trade center in 2001, and because many others who also responded have since developed various autoimmune diseases. I have been positive several times in the past with a 1:160 only to have a normal test the next time. This is the highest it has been. I was also tested this time and in the past for RA but that was negative. I did have one positive reading a few years ago for sjorgens, only to be negative the next two times i did it. Anyone have any suggestions for additional blood testing. Mixed Connective Tissue Disease is one thought, because of the prevalence amongst other responders, but i dont fit the symptoms.

I have Axonal Peripheral Neuorpathy with some demyelination in my feet and legs past the knees, and in my hands and wrist area which has progressed slowly but steadily for over 15 years now. Im pretty sure it has also started to affect my small fiber nerves.

kiwi33 12-01-2016 10:31 PM

ANA titres can vary by at least a factor of two, both for the same person tested in different labs and for the same person tested by the same lab.

This is because the test entails setting up a binary dilution of a serum sample. Maybe on one day an elevated titre of ANA in one person tested in one lab might be at a 1:160 dilution and the next day it might be at a 1:320 dilution for the same person tested in the same lab.

Your titres are slightly elevated but many people have titres in that range with no other signs of an auto-immune disease.

A homogeneous staining pattern can but need not indicate SLE and/or Mixed Connective Tissue Disease but usually more investigations are needed before/if a diagnosis is confirmed.

This information might help you RACGP - Antinuclear antibody test.

echoes long ago 12-01-2016 10:43 PM

Thanks for the information and link.

en bloc 12-01-2016 11:44 PM

It is not uncommon for Sjogren's marker testing to be positive one time, and negative the next. If there is any question of Sjogren's and you have typical symptoms, you should undergo a lip biopsy for confirmation or to rule it out.

mskari85 12-05-2016 01:21 AM

That is my literal, exact same result for ANA. 1:320 homogenous pattern. I have RA - seropositive with anti-ccp antibodies and a high rheumatoid factor. Negative for sjogrens. Negative for every other autoimmune disease under the sun, including lupus. RA is controlled by meds and isn't much of an issue anymore. Small fiber neuropathy, full body, rages on and on (even with normal inflammation markers) in what I assume is an autoimmune process without a name. It's truly a big mystery but as far as I have been told, a positive ANA indicates, well, any autoimmune mechanism.

stillHoping 12-05-2016 03:49 AM

I have autoimmune disorder even though my ANA and all other immunological blood tests are negative. Have been tested for Sjogren many times it was always negative, and my lip biopsy (about 15 years ago) showed mild inflammation nonspecific to Sjogren. During these years I had a few positive borderline results which became negative when repeated a few years later.
But there is no doubt that my POTS, fatigue and probably the sensory symptoms of my SFN, are responding greatly to Rituximab and prednison.

If you had some positive RA and Sjogren blood tests in the past isn't it enough to justify a diagnosis and immunological treatment ?
In my case I got the Rituximab based on the progression of my symptoms, my response to treatments and some autoimmune disorders in my family.

echoes long ago 12-05-2016 10:51 AM

i had one positive sjorgens test about 8 years ago, which a month later was negative and later over the years negative. ANA is up and down. This 1:320 reading is the highest its been. Over the 15 years of my peripheral neuropathy symptoms. the only positive tests that i have ever had are the emg/ncs's showing that i have large fiber primarily axonal sensory motor PN and that it is progressing steadily, and the ANA's. Specific autoimmune antibody markers have all been negative except for that one sjorgens test which has never replicated. I have gotten tested pretty regularly for various autoimmune conditions over the last decade.

echoes long ago 12-05-2016 04:42 PM

1 Attachment(s)
this is a chart of the prevalence of autoimmune diseases in fdny wtc responders

Sophie0513 12-10-2016 11:47 PM

Question
 
Quote:

Originally Posted by stillHoping (Post 1230328)
I have autoimmune disorder even though my ANA and all other immunological blood tests are negative. Have been tested for Sjogren many times it was always negative, and my lip biopsy (about 15 years ago) showed mild inflammation nonspecific to Sjogren. During these years I had a few positive borderline results which became negative when repeated a few years later.
But there is no doubt that my POTS, fatigue and probably the sensory symptoms of my SFN, are responding greatly to Rituximab and prednison.

If you had some positive RA and Sjogren blood tests in the past isn't it enough to justify a diagnosis and immunological treatment ?
In my case I got the Rituximab based on the progression of my symptoms, my response to treatments and some autoimmune disorders in my family.

What is ritiximab ? Does it help with symptoms? And you said you were prescribed this because the progression of your symptoms, did your symptoms come on slowly or quickly?

kiwi33 12-11-2016 02:54 AM

Rituximab is a monoclonal antibody, originally made in mice, which has been humanised so it is in effect a human monoclonal antibody. It is on the WHO "List of Essential Medicines", the most important medications needed in a basic health system.

Rituximab binds to a protein called CD20 which is found on B cells. Because of that it can be effective in treating RA and there is also evidence that it can help in treating other auto-immune diseases like SLE, MS and Sjogren's syndrome.

Like all biological therapeutics it can potentially have very serious adverse side-effects so it is worth getting a prescribing doctor to explain those to you before deciding whether or not to use it.


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