Author Topic: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013  (Read 2698 times)

litliwlowa

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #15 on: June 28, 2013, 06:36:01 PM »
Does anyone know if this test is available yet?
I was wondering the same thing, given as we are now about half way through 2013
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #16 on: June 28, 2013, 09:35:44 PM »
Good timing on your question.

I sent one of the scientists, Julian L. Ambrus Jr., MD, an inquiry and Thank you note for his research on June 21.

He wrote back. Just learned MIL may know his family in Buffalo.

"The tests were recently approved by NYS and are available through Immco
Diagnostics. I have attached an order sheet for you. ...There will hopefully be some new forms of therapy soon.

Julian"


Julian L. Ambrus Jr., MD
Division of Allergy, Immunology and Rheumatology
SUNY at Buffalo School of Medicine
Room C281, Buffalo General Hospital
100 High Street
Buffalo, NY 14203

It has been stressful here with my mothers legal issues, I am going to send a follow up to Immco for information.
Immco has three tests for Sjogrens #'s 076,093,097
*I do not see how to attach a PDF here, which is what was sent to me.

I would think that this would help a lot of those whose current blood work is coming back negative. Very exciting.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

jazzlover

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #17 on: June 28, 2013, 09:44:17 PM »
Ro  and La?? What is that??
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #18 on: June 28, 2013, 09:51:37 PM »
ImmcoDiagnostic: Early Sjogren’s Syndrome Profile (includes tests 094, 095, and 096)

On the left hand side is the request form ...so you would have to discuss this "new" test with your Doctor.
http://www.immco.com/lab-services/search.aspx?Param=Code&Search=093
« Last Edit: June 28, 2013, 09:58:09 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #19 on: June 28, 2013, 09:56:08 PM »
Ro  and La?? What is that??

American-European Consensus Sjögren’s Classification Criteria

VI. Autoantibodies (at least one)

        Anti-SSA (Ro) or Anti-SSB (La)

http://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria

« Last Edit: June 28, 2013, 10:44:51 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

4Kids

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #20 on: June 29, 2013, 08:35:54 AM »
How do we find out if Canadians can take this or if it is available in Canada?

I think this is so important. Obviously by the time it shows up in our blood we are quite sick. I do not want to do what the drs now want me to do, which is go off meds until I get sick enough to show + bw or become horrendously dry. Not cool, lovely rheumy. Not cool.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

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SjoGirl

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #21 on: June 29, 2013, 12:55:44 PM »
The test won't be available until next year.

It will be interesting to see how widely it is available and if docs start to use it. First though I think you'd have to find one who would even consider SjS when making a diagnosis.

Plaquenil is supposed to help slow the progression and mitigate symptoms (I have much less fatigue since I've been on it).
Raynauds, SjS, Anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, Plaquenil, Fosomax, multivitamin with iron, Vitamin D, and Feosol (if my iron levels really dip).

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #22 on: June 29, 2013, 01:21:21 PM »
4kids...

Your question about scope of  availability is what I was wondering  about when I read the response from the Dr. Ambrus.
I am going to write to Immco for clarification. You can do the same.

I did find an extensive study done in Norway on Sjogrens that used Immco.  Not this newer test.

This would be a good diagnostic to verify or rule out Sjogrens.

One can google/search "disease that mimic Sjogrens", "Sjogrens mimickers" (symptoms),etc.

   
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #23 on: June 29, 2013, 01:22:05 PM »
The test won't be available until next year.

It will be interesting to see how widely it is available and if docs start to use it. First though I think you'd have to find one who would even consider SjS when making a diagnosis.

Plaquenil is supposed to help slow the progression and mitigate symptoms (I have much less fatigue since I've been on it).


SjoGirl ...Why do you say that?  The Dr. sent me the test request form from Immco.  And Immco has them on their site.
« Last Edit: June 29, 2013, 01:31:22 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

litliwlowa

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #24 on: June 29, 2013, 01:58:12 PM »
I went on the immco site directly and eventually found the referenced new tests for sjogrens. So they are available, but perhaps only through immco at this time?

SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #25 on: June 29, 2013, 05:26:33 PM »

"
Sjogren's Syndrome: New Discovery by UB and Immco Makes Early Diagnosis A Reality for the First Time
The new diagnostic test will be available to physicians in early 2013
By Ellen Goldbaum

Release Date: December 12, 2012
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"The vast majority of patients we tested who have early symptoms. . . also have these antibodies," says Ambrus (right), co-author with Long Shen, both of UB.
*


BUFFALO, N.Y. -- Patients suffering from the painful autoimmune disease, Sjogren's Syndrome, will soon be able to be properly diagnosed much earlier, thanks to the discovery of novel antibodies by researchers at the University at Buffalo and Immco Diagnostics, Inc. The breakthrough, described in a paper in the December issue of Clinical Immunology  will allow patients to be treated sooner when they are much more likely to benefit.

"Sjogren's patients get diagnosed too late," says Julian L. Ambrus Jr., MD, professor in the Department of Medicine in the UB School of Medicine and Biomedical Sciences, an immunologist at Buffalo General Medical Center and senior author on the paper. "They go to the doctor because their eyes are dry or they can't swallow, but by that time, their salivary or tear glands are already dead. They're way past the point where they can generally benefit from any treatment."

The new antibodies were seen in 45 percent of patients who met most of the clinical criteria for Sjogren's except for the antibodies currently required for diagnosis, called Ro and La. At least one of the novel antibodies is present in 76 percent of patients who have had symptoms for less than two years and who also lacked the two antibodies required for definitive diagnosis, which appear late in the disease.

"The vast majority of patients we tested who have early symptoms of severe dry mouth and dry eyes also have these antibodies," says Ambrus.

The journal highlighted the research paper with an editorial by Robert I. Fox, MD, PhD, of Scripps/Ximed, considered one of the world's top Sjogren's Syndrome scientists.

Considered one of the three most common autoimmune diseases, Sjogren's Syndrome affects more than 4 million Americans, 90 percent of them women; last year, Venus Williams, the tennis champion, announced that she had the disease. Symptoms are dry eyes and dry mouth so severe that they are painful. Despite its high incidence, Sjogren's is not well-known and can take years to diagnose; once diagnosed, it is often too late to effectively treat it.

Beyond the chronic pain associated with not being able to produce tears or saliva, the disease is associated with additional, systemic consequences, such as mild kidney and lung disease. Five to 10 percent of Sjogren's patients also will develop lymphoma, cancer of the lymphocytes, a type of white blood cell that is continually produced in Sjogren's Syndrome.

The discovery of novel antibodies grew out of a strong collaboration between UB and Immco, which in 2006 resulted in a new, far superior animal model for Sjogren's Syndrome.

"Our animal model has completely changed how people think about this disease," says Ambrus. "Sjogren's disease in our animal model marches along in exactly the same way that the human disease does, reproducing every stage of the disease."

Labs studying Sjogren's around the world have now adopted the new model developed at UB and Immco, which is based in Amherst.

Once the new antibodies were detected in mice, the scientists started testing human patients at Buffalo General Medical Center. The researchers found the same antibodies in humans even at early stages of the disease.

UB has filed a patent on the biomarker-based method and licensed the technology to Immco, which has developed a new diagnostic tool based on the research.

"We believe this is one of the most undiagnosed autoimmune diseases," says William Maggio, Immco's chief executive officer.

The new diagnostic tool his company developed for Sjogren's Syndrome has significant proprietary value. "We will be the only company in the world to offer and market this test across any platform," he says.

And because Sjogren's Syndrome presents with various symptoms, unlike other autoimmune diseases, this diagnostic test will be marketed to several different types of physicians, including dentists, oral surgeons, ophthalmologists and rheumatologists.

The assay will undergo validation by the New York State Department of Health. Once complete early next year, physicians will be able to start using the test. Patient samples from around the nation will be sent to Immco for testing. Immco also is developing a diagnostic kit for customers to be marketed internationally."

http://www.buffalo.edu/news/releases/2012/12/13854.html  (in original post)
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

SjoGirl

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #26 on: July 01, 2013, 05:10:34 PM »
Hum, sorry if I've caused confusion. I thought for sure when I attended the SjS Foundation patient conference this year that they said the test would not be available until next year. I may have misunderstood.
Raynauds, SjS, Anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, Plaquenil, Fosomax, multivitamin with iron, Vitamin D, and Feosol (if my iron levels really dip).

quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #27 on: July 01, 2013, 05:27:30 PM »
Hum, sorry if I've caused confusion. I thought for sure when I attended the SjS Foundation patient conference this year that they said the test would not be available until next year. I may have misunderstood.

SjoGirl what was the attitude towards the test? Any input at the conference?
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

4Kids

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #28 on: July 12, 2013, 06:06:11 PM »
Bump for those about the new testing available.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

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quietdynamics

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Re: Beyond Ro and La, Current Criteria: New Early SJS Test available 2013
« Reply #29 on: July 12, 2013, 08:12:41 PM »
Here is the communication I received from IMMCO.
The attachments are PDF, I cannot convert them to copy..so I scanned and am posting that way.

Good morning Barbara

Thank you very much for your e-mail. We are always pleased to hear from our community and hope that our work proves to be meaningful for sufferers of autoimmune disease and, like you said, that research keeps evolving.
 

I have attached an information sheet we prepared on the novel markers for Sjogren’s Syndrome that I hope provides you with the information you are looking for. There is information on the test panels we offer on the back of the information sheet as well as how to submit samples although I have also attached the Sjogren’s specific test request form. Your doctor would be the one responsible for ordering the test. He/She needs to fill out the test request form and we will send them in return a collection kit. Once the samples are collected they simply return to us and we provide them with the results.

The Tests Panels are as follows:

New tests:

093 : Early sjogren profile (includes 094-sp1;095-cA VI and 096 –PSP) Cost is of  $330 dollars

097: comprehensive Sjogren profile (profile (includes 094-sp1;095-cA VI and 096 –PSP, 001 ANA, 011 RF,045 SSA,046 SSB, 7 511 H & E minor salivary glands)

Modification of old tests:

076 : Sjogren’s syndrome profile: will now include 094,095 and 096 in addition to 001,011,045 and 046

You can also find more information on each specific test from our website: http://www.immco.com/lab-services/test-services.aspx (diseases listed alphabetically)

Please let me know if there is anything else I can help you with.

 All the best,

Lourdes Vazquez-Mitchell, M.Sc.
Product Manager
Nova Century Scientific, Inc.
An Immco Diagnostics Company

* scans in next posts, so if someone can do it better, we can just remove.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea