Hi There,
What does seronegative actually indicate?
Just SSA/SSB negative?
or
SSA/SSB/ANA/RF negative?
or
What ?
Thanks
Hi happy life,
For me sero negative has always been that I have NO blood factors for SJS. In fact, I've never had to ponder those terms you used in your post.
It turns out that my IgE is at the lowest possible point in the range, and therefore I have no 'true allergies' and also no auto immune factors. My Immune System attacks my organs/systems with Cytokines (this is the theory, which can't be tested), and that's what has probably caused my Sjogren's-like damage. And all the rest.
Now I am diagnosed with Immune Deficiency Disorder (CVID) and the mystery which started years ago with a diagnosis of seronegative Sjogren's is more or less explained.
Regards, Elaine
Hi Ealine,
How did the doctor diagnize you with sjogren? lip biopsy or just based on symptoms?
Thanks
For anyone else reading, cytokines are chemical messengers that can either increase or reduce inflammation.
Proinflammatory cytokines List review
Proinflammatory cytokines are produced predominantly by activated macrophages and are involved in the up-regulation of inflammatory reactions. IL-1?, IL-6, and TNF-? are the typical proinflammatory cytokines.
sinobiological.com/Proinflammatory-cytokines-list.html
Elaine, why do you say the theory cannot be tested? Can't levels of the cytokines be measured in the blood?
Dear snoweye,
I wondered the same thing! So I asked my husband, a research immunologist, that question.
It seems that cytokines don't do damage by being in large numbers in your blood, like autoantibodies. The blood level of cytokines can be measured, but the damage is done by cytokines when a damaging amount is released by my Immune System. Cytokines are released as part of the normal reaction to infection, but for some reason they are used by my Immune System against normal organs/systems of my body.
If that sounds unclear, it is because I am unclear on this subject. I guess the bottom line is that there is no treatment for the way in which cytokines are released by my immune system. AND my Immune system is NOT overactive, so the damage done cannot be addressed by suppressing my Immune System. In fact, I have a deficient Immune System.
There are those on our forum with both Immune deficiency AND excess autoantibodies and those people do have both treatment for Immune deficiency AND suppression of their Immune System, in some cases. Talk about weird! But it works for them.
Cytokine damage cannot be managed by Immune suppression, in my case. It was always a mystery how I could appear to have autoimmune conditions (Severe Eczema, Sjogren's, IC, Meniere's, and a slew of neuropathies) and yet have no measurable autoantibodies.
Once I was diagnosed with my Immune Deficiency, CVID, my Duke research immunologist explained that in the best theory the damage to my organs/systems came from release of cytokines against my body.
In our present understanding of the Immune System there is no explanation why this happens. At some time in the future, genetic explanations will possibly be defined. Of course explanations don't produce treatments or cure, but are the path towards both.
So I am seronegative for autoantibodies as a cause for my many conditions, for which I had the first diagnosis of Sjogren's, based only on symptoms. My Yale trained rheumatologist at the time (2002) felt that a lip biopsy would yield no useful information since the only treatment for me, at the time, was treatment of symptoms.
I still treat only symptoms. Except in the case of my Immune Deficiency for which I have IVIG every four weeks. That gives me IgG and raises my IgG to a normal level and keeps me from getting MOST infections.
We all struggle with so many difficult problems, as we have conditions which are not well understood.
Regards, Elaine
Along the same lines, years ago my doc an I developed a theory that may be grasping at straws but seem appropriate to my personal situation.
I seemed that whenever I lost weight (to get healthier) I got a whole lot sicker! He was aware of some early research on cytokines, and shared it with me, along with the term "adipokines", which are cytokines secreted by adipose (fatty) tissue. We decided that when I lost weight (broke down fatty stores), those adipokines were released in bulk, and where overwhelming my immune system, already subject to self attack.
I have no idea if this is accurate or even meaningful, but it seemed to fit with my pattern of flares, and when I started really paying attention, and when I decided to lose weight was cautious and slower about it (painfully, frustratingly slow), flares decreased in intensity.
I found an article from 2013 (easily 20 years after my doc and I discussed it) talking about adipokine mediated inflammatory sresonse and various illnesses that I found very interesting:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3679475/
I've only had one rapid period of weight loss since then, and I attribute that to turmeric and oatmeal every day, and with the resulting drop in ESR (I'm guessing from the turmeric) I had very minor flares if any over a 6 month 10 KG weight loss.
Quote from: Carolina on March 31, 2018, 08:10:03 AM
Dear snoweye,
I wondered the same thing! So I asked my husband, a research immunologist, that question.
It seems that cytokines don't do damage by being in large numbers in your blood, like autoantibodies. The blood level of cytokines can be measured, but the damage is done by cytokines when a damaging amount is released by my Immune System. Cytokines are released as part of the normal reaction to infection, but for some reason they are used by my Immune System against normal organs/systems of my body.
If that sounds unclear, it is because I am unclear on this subject. I guess the bottom line is that there is no treatment for the way in which cytokines are released by my immune system. AND my Immune system is NOT overactive, so the damage done cannot be addressed by suppressing my Immune System. In fact, I have a deficient Immune System.
There are those on our forum with both Immune deficiency AND excess autoantibodies and those people do have both treatment for Immune deficiency AND suppression of their Immune System, in some cases. Talk about weird! But it works for them.
Cytokine damage cannot be managed by Immune suppression, in my case. It was always a mystery how I could appear to have autoimmune conditions (Severe Eczema, Sjogren's, IC, Meniere's, and a slew of neuropathies) and yet have no measurable autoantibodies.
Once I was diagnosed with my Immune Deficiency, CVID, my Duke research immunologist explained that in the best theory the damage to my organs/systems came from release of cytokines against my body.
In our present understanding of the Immune System there is no explanation why this happens. At some time in the future, genetic explanations will possibly be defined. Of course explanations don't produce treatments or cure, but are the path towards both.
So I am seronegative for autoantibodies as a cause for my many conditions, for which I had the first diagnosis of Sjogren's, based only on symptoms. My Yale trained rheumatologist at the time (2002) felt that a lip biopsy would yield no useful information since the only treatment for me, at the time, was treatment of symptoms.
I still treat only symptoms. Except in the case of my Immune Deficiency for which I have IVIG every four weeks. That gives me IgG and raises my IgG to a normal level and keeps me from getting MOST infections.
We all struggle with so many difficult problems, as we have conditions which are not well understood.
Regards, Elaine
Hi Elaine,
You were diagnosed with sjogren purely based on symptoms....no lipbiopsy and no antibodies.
Very strange....is your case a rare exception? Or there are many such cases?
My case sounds like yours. My ana,ssa,ssb,esr,crp,rf all were negative......but i have inflammatory dry eyes, dry nose with chronic rhinitis and mild dry mouth.,.. All these symptoms developed in just 6 months.
So my case sounds very much like your case.
Now my question is did your doctor tell you that systemic oral anti inflammatory and immune suppressant work help us? We have to meet wait for new disease to appear and then that specific medicine is given?
Thanks
According to the Sjogren's Syndrome American-European Consensus Sj?gren?s Classification Criteria (https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria), a patient must have a positive lip biopsy or anti-SSA or anti-SSB antibodies to be diagnosed as having SS. Thus, seronegativity is strictly defined as a positive lip biopsy in the absence of autoantibodies. However, as noted on the linked page above, "Classification criteria is the strictest criteria available to prove a definitive diagnosis of Sj?gren?s for research purposes. Physicians usually diagnose SS for clinical purposes on a more individual, medically intuitive and broader basis." In other words, these criteria are strict to help ensure the quality of clinical trials, and individual doctors have flexibility in making a diagnosis based on other clinical criteria.
I have a seronegative diagnosis based primarily based on symptoms. My blood work (SSA, SSB, RF, ANA, other inflammatory markers) is generally fine, with only low platelets and lymphocytes to indicate a problem. My symptoms (dry eyes, mouth, fatigue, joint pain, minor neuropathy), however, line up perfectly with SS. My rheumatologist is willing to prescribe Plaquenil despite my seronegative status, while my optometrist prescribes Restasis and Xiidra. We have spoken about other treatments, but as nothing is approved for SS and side effects for off-label biologics and DMARDS are not insignificant, it has not been a serious issue. If a new promising treatment became available or my symptoms worsened, I would again have to discuss new treatment options.
At the end of the day, a diagnosis mainly matters insofar as it leads to available treatment options. Because there are limited treatments available for SS patients, there is little difference between a Sjogren's Syndrome and Sicca diagnosis. In my experience, a good rheumatologist will focus on improving patient's health and quality of life rather than treating them like an extension of their labs. I have experience with both types, and I refuse to settle for a rheumatologist who dismisses my health concerns due to contrary labs.
https://www.google.com/amp/s/lupusnewstoday.com/2017/10/02/positive-anti-ss-b-autoantibodies-not-linked-to-lupus-sjogrens-syndrome-in-study/amp/
Speaking of Anti SS-A and SS-B; their presence alone isn't everything (as far as MCTD diagnosis) apparently. Interesting article.
Quote from: WhatYouSjo on April 02, 2018, 07:08:58 AM
According to the Sjogren's Syndrome American-European Consensus Sj?gren?s Classification Criteria (https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria), a patient must have a positive lip biopsy or anti-SSA or anti-SSB antibodies to be diagnosed as having SS. Thus, seronegativity is strictly defined as a positive lip biopsy in the absence of autoantibodies. However, as noted on the linked page above, "Classification criteria is the strictest criteria available to prove a definitive diagnosis of Sj?gren?s for research purposes. Physicians usually diagnose SS for clinical purposes on a more individual, medically intuitive and broader basis." In other words, these criteria are strict to help ensure the quality of clinical trials, and individual doctors have flexibility in making a diagnosis based on other clinical criteria.
I have a seronegative diagnosis based primarily based on symptoms. My blood work (SSA, SSB, RF, ANA, other inflammatory markers) is generally fine, with only low platelets and lymphocytes to indicate a problem. My symptoms (dry eyes, mouth, fatigue, joint pain, minor neuropathy), however, line up perfectly with SS. My rheumatologist is willing to prescribe Plaquenil despite my seronegative status, while my optometrist prescribes Restasis and Xiidra. We have spoken about other treatments, but as nothing is approved for SS and side effects for off-label biologics and DMARDS are not insignificant, it has not been a serious issue. If a new promising treatment became available or my symptoms worsened, I would again have to discuss new treatment options.
At the end of the day, a diagnosis mainly matters insofar as it leads to available treatment options. Because there are limited treatments available for SS patients, there is little difference between a Sjogren's Syndrome and Sicca diagnosis. In my experience, a good rheumatologist will focus on improving patient's health and quality of life rather than treating them like an extension of their labs. I have experience with both types, and I refuse to settle for a rheumatologist who dismisses my health concerns due to contrary labs.
Hi whatYouSjo
What is the status of the following in your case.
1. Lipbiopsy
2. Occular stain score?
3. Schirmer score
4. Unstimulated salivary flow
5 when was your first sjogren symptom and when was the sjogren diagnosis
6. What symptoms are you having now related to sjogren
Thanks
Quote from: happylife on April 02, 2018, 11:20:14 PM
Hi whatYouSjo
What is the status of the following in your case.
1. Lipbiopsy
2. Occular stain score?
3. Schirmer score
4. Unstimulated salivary flow
5 when was your first sjogren symptom and when was the sjogren diagnosis
6. What symptoms are you having now related to sjogren
Thanks
1. It was years ago; I don't remember the exact focus score, but it was both 'abnormal' and less than the 1 required by the AEC criteria. It was also at a time before I experienced much dry mouth, but I would not do it again with due to risks of nerve damage.
2. The notes I have simply state 'positive staining with fluorescein'. No number is given.
3. Before I started treatment, the lowest score was a 4, though it improved into the mid-high single digits.
4. I have never been given this test.
5. I had minor dry eye issues for years, but was only diagnosed in 2014. Dry eye increased significantly about 20 months before diagnosis (Schirmer's score of 4), but was improved with Restasis. Other symptoms (joint pain, neuropathy, fatigue) increased about 8 months before and eventually led me to the diagnosis.
6. Dry eye, dry throat (parotid seems most affected), dry sinuses, joint and muscle pain, fatigue, minor parotid swelling. Rarely minor neuropathy (lips). My symptoms are less serious today than at the time of diagnosis, but tend to amplify during flares/illness.
My understanding of the clinical definition of the factors required for a diagnosis of Sjogren's Syndrome, as described by WhatYou Sjo, is that in order to carry out valid research on Sjogren's Patients, the BASE LINE for diagnosis must be met by all those studied.
So, the clinical diagnosis is clear, but need not be applied to everyone treated with symptoms similar to those of Sjogren's Syndrome. And in my case, I have exactly the same 'attack on my body' mounted by my Immune System that occurs in the Auto Immune Condition that is Sjogren's.
When I was first 'diagnosed' with Sjogren's, only symptoms were being treated (mouth and eyes) and the more powerful treatments that involved suppressing the immune system weren't under consideration. I never believed that what I was experiencing would be helped by Immune Supressants, actually.
I developed more and more 'idiopathic conditions' but it wasn't until 11 years after my Sjogren's-like symptoms appeared that my Immune Deficiency was discovered. And now that is my Unifying Diagnosis. My Immune System is, indeed, the source of my woes.
Regards, Elaine