Resources and research papers

General
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I would like to propose a new single thread (discussion) that includes all references. links and new research papers that pertain to Sjogren's.

This would keep it all in one place and make it easier for members and particulary new members to find such information without having to search all discussions and then search each one singly to find references.

Perhaps Dryguy and Kazzcass would like to comment please as they seem to be most active in searching for new developments?

I shall start with

http://www.dry.org/fox20020816/guide.htm

a good introduction by the world leading Sjogren's expert.

Here is his website a good start point for fellow searchers after the truth, treatment and a cure.

http://www.robertfoxmd.com/

I attach one powerpoint presentation from him, I can't attach the other as it is too large.However here is a link to download it for yourself

http://www.robertfoxmd.com/PresentationsByFox/Sjogren%27s_syndrome~_Pathogenesis_and_New_Directions_for_Therapy.ppt

The theme is the interaction of the immune response and the nervous system.

This is the area that most interests and excites me, as it is in my opinion, the area most likely to provide possible short term treatment of Sjogren's if only someone would follow up the basic research with applied research into treatments. A cure will be more difficult sadly.

I firmly believe that many of the effects of Sjogren's are due to the production of auto antibodies to the M3 receptors which then impact on the neurotransmitters (acetyl choline) and prevent functioning of the exocrine glands and also causes the pains, cystitis and fatigue that we suffer.

The main researcher in this field is Professor Tom Gordon in Australia, unfortunately he has not answered any of my emails so far ( if any of our Australian members would like to help please pm me).

http://blogs.flinders.edu.au/flinders-news/tag/professor-tom-gordon/

http://www.fmcfoundation.com.au/vital-research/220-autoimmune-disease

http://www.imvs.sa.gov.au/wps/wcm/connect/sa+pathology+internet+content/content/about+us/pathologists/gordon,+professor+tom+p

A very modern paper on this area originally in Japanese - any Japanese members like to contact the authors? It seems Japan, China and Australia are the only countries doing any significant research into autoimmunity and serology particularly Sjogren's.

http://www.ncbi.nlm.nih.gov/pubmed/23629427

These autoanti-bodies may also be relevent to Lupus and scleroderma, MS and fibromyalgia.

I hope the attached and this thread are of help to my fellow sufferers of this dreadful disease and the ignorance of the medics :) Keep fighting ignorance and push your medics to read these articles and look at these presentations and follow them up!!!

Best wishes to all Mike

80-Kyoto__2013.pptx (2.7 MB)
2

Great idea Mike, I had been putting much of this info under success stories, as at the time it was a headlined discussion and easy to access, but this is a far better idea.

http://forum.sjogrenssyndromesupport.org/forum/topics/success-stories

To find this in the future, go to the very top right of the page, beside of your screen name, giving you the option to sign out, and you will see the search engine. Just type in resources and research, click on the magnifying glass, and access and/or add any pertinent info that you should come across.

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wonderful idea. there have been times where I came back looking for something I had read here and couldn't find it again.

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http://forum.sjogrenssyndromesupport.org/forum/topics/sjogren-s-medical-booklet-online?page=1&commentId=6557681%3AComment%3A20254&x=1#6557681Comment20254

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http://forum.sjogrenssyndromesupport.org/forum/topics/dry-eye-treatments-in-pipeline

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THIS IS A PARTICULARLY GOOD OVERVIEW OF IMMUNE SYSTEMS AND STEM CELL RESEARCH IN A.I. DISEASE RECOMMENDED READING FOR ANYONE INTERESTED- not too techie and a nice simplified overview of the immune system well done NIH!

http://stemcells.nih.gov/info/scireport/pages/chapter6.aspx

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We are encouraged to report medicine side effects to FDA, here is the link

http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

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Recent article about whipworms. If it worked you’d use em!

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dryguy said:

Recent article about whipworms. If it worked you'd use em!
I guess I didn't post the link, this is the link to Nature, you can also google news whipworm and find easier to read articles http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.3010.html
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A news article from last week. It is a new approach to autoimmune disease and was proven successful in mice models. Hopefully they continue to have success and move to human trials.

http://www.healthline.com/health-news/designer-t-cells-quash-autoimmune-disease-061814

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hi dryguy
interesting - this is the area I believe has most short term promise for us but note the lack of mention of sjogren’s yet again always any ai except that mentioned every time!

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Here is an article about the neurological effects of SS - many rheumatologists and neurologists do not accept it has any effects!

81-TheNeurologyofSjgren.docx (115 KB)
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Spoke to rheum about parotid irrigation and he said they’ve had some good results with it and they need a stupid CPT code and ENT’s need training for it. He’s not sure when/if it will happen but said yes they are doing it at NIH. He also said that he along with other experts in sjogrens believe the glands are more in a paralytic state from cytokines and such which prevent their functioning as well as M3 receptor autoantibodies. He also told me they’ve had good results with gene therapy using adeno viruses and adeno associated viruses being directly injected into the glands. As well as using different interleukins like IL-17 and IL-10. Here’s a quick abstract I found http://www.ncbi.nlm.nih.gov/m/pubmed/20856230/ it’s nice but it was the first hit on google I got.

He feels that with the work at NIH they will find real treatments for the xerostomia and other dryness and symptoms which was nice to hear.

I also spoke with him about the IMMCO test from Nicox. He said they are quite adamant about only giving it to optho and not rheum since they’re a eye company but they are pushing to get it and study it. He also told me he just saw a man earlier in the week who has severe dry eyes and tested positive and now he’s working him up and he’s gotten a bunch of patients that way. He also recommended the company lease the test to quest so that it’s more available. He asked me to get it done when I see optho next and send him the results. He also told me that pediatric sjogrens tends to present with parotid swelling but no dryness

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Thanks dry guy - I had seen that paper but not been able to put it here due to losing internet and phone connections for 2 weeks.

I agree that cytokines and failure of the salivary glands to secrete (paralysis) rather than cell death of the acinar cells is the main cause of xerostomia in early SS later teir is apoptosis but even in severe SS upto 50% of acinar cells are living but secretions are minimal.

I think that cytokines are only the “messanger” and are adding to the effect but think that the main effect is paralysis of the secretory glands everywhere due to auto anti bodies to M3 receptors on their membranes this in turn blocks the autonomic nerves from transmitting acetycholine to them so there is no response to the nervous stimulation.

Ask you rheumatologist to look at the work of Prof Tom Gordon shown above plus these 2 links to recent work in the USA. They are working on the same basic theoretcial models.
I think parotid flushing is a stop gap as the cytokines and anti bodies will reaccumulate fairly quickly.

http://www.ucsf.edu/news/2014/04/113961/autoimmune-diseases-may-succumb-new-drug-strategy
http://www.healthline.com/health-news/designer-t-cells-quash-autoimmune-disease-061814

This is where I believe treatment will come from - Not a cure though the effects will be relatively short lived and need repeating.
Gene therapy and/or stem cell research will probably find a “cure” but this is way off I believe (over 20 years given the speed of trials and licensing etc).

Keep pushing your rheumarologist to read this stuff as he seems better than most and may help you get some trial which may help us all in the end.

I will gladly pay to come to the US or Australia and act as a test patient with informed consent if I am fully informed of the actual trial proceedure and not wait for stage 1, 2 3 trials to grind through the mill - I’ll be dead by then, so happy to take calculated risks life as is now isn’t for me worth living I need my health and ability to have a physical life without I am incomplete foggy brained cerebral life just doesn’t cut it for me.

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Thanks for the links. I'll have to read the articles later. Not to be funny, but right now my brain isn't computing.

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Anyone know what ever came of this? Wish I got it a few years ago :confused: http://www.sickkids.ca/AboutSickKids/Newsroom/Past-News/2002/Researchers-identify-candidate-vaccine-for-Sjögren-syndrome.html

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So I'm skimming the article and then read the conclusion. Based on the demyelinating lesions on my brain I was diagnosed with MS for 11 years before a neurologist said they were not demyelinating lesions but probably lesions from my migraines. Then I'm given the dx of Sjogren's. But this article has me wondering what kind of brain lesions I really have. When I asked about a recent diagnosis of Fibromyalgia as to why it was not diagnosed earlier, the doctor said that medicine is not an exact science. Boy, does he have that right!!

assybish said:

Here is an article about the neurological effects of SS - many rheumatologists and neurologists do not accept it has any effects!

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If you all like, I can ask Rose to make a new tab at the top of the page called "Sjogren's Info," and these resources can be listed there permanently. Thank you for starting this rolling, Mike.

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Hi Dry guy here’s your answer from the horse’s mouth.

It also reinforces the point I’ve made elsewhere - just because it’s a research paper doesn’t mean it’s true and human trial aren’t the same as mouse or other animal trials we might all be mammals but there are very significant differences.

As ever no money no interest = no research
It is Sjogren’s after all and none cares

http://sjogrensworld.org/forums/index.php?topic=6133.70;wap2

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Here is a study from not long ago that had fairly good results using allege epic mesenchymal stem cells. I know some people do medical tourism to receive this for different diseases. Has anyone looked into this? http://bloodjournal.hematologylibrary.org/content/bloodjournal/early/2012/08/27/blood-2011-11-391144.full.pdf?sso-checked=1