New drugs being researched for Sjogren's Syndrome:

There was no date to be found on this, and I am unfamiliar with these drugs, so it seems that they are being researched and possibly developed in Asia, and actually ARE NEW!

http://www.arthritistoday.org/about-arthritis/types-of-arthritis/sjogrens-syndrome/treatment-plan/treatment-for-sjogrens-syndrome.php

Thanks for the link.

Sure, let me know what you think!

BTW if you have any suggestions for me getting this site going again, please let me know. I'm open to all members for any advice, thoughts, comments, suggestions, you may have!

In the meantime, when I'm not entertaining or watching one of the grand kids, I'll keep throwing information your way!

Thanks,

SK

Don't know what to think. All my AI diseases are being treated under one umbrella. The only offshoot is the bronchiectasis which is treated by the pulmonolgist who is mostly concerned with me being able to breathe and infection rather than the Sjpgren's symptoms. I'm having a major SS flare at the moment.

Interesting about the H1N1 shot and the affected B cell morphology. Also that one of the studies is about turning off the B cell response which is also been studied in lupus.

All these studies and trials are less than the whole . . . etc. Everyone is onto something. When do us AI patients get the scientists looking at the "whole picture" instead of al this competitive research.

I know! You are up against a lot right now, and here is what I know from my rheum as far as 'whole picture', and let's use Enbrel as an example.

Once those Phil Michelson commercials hit the TV, the diagnosis time of Psoriatic Arthritis went from an average dx time of 35 years, down to 7 years. He told me that a year or two ago, so it's probably even better now! Of course we have to get a med FIRST, but this article in Arthritis Today, which is in every Doctors office in at least America, shows that is happening, or going to happen soon.

I know it's not as soon as you need it, but it's coming. Our work here on this site, keeping it going, can only help raise awareness that will result in better meds, better care, and Doctor knowledge, don't you think?

All of mine are treated in the same manner, except for NSAIDS and Lyrica! I have 2 a1systemic, 1vascular.

Wow! Thanks for this.

You are so welcome Arabablynn! Hope they get moving!!! Good to hear from you, look forward to getting to know you!

Wishing you well,

SK

Arabrablynn said:

Wow! Thanks for this.

WOW!!!! Kaz your info is FANTASTIC! You even found some dates! Well, since these have been developed, tested and used from such an early date in the Orient, hopefully they will be coming to our countries pronto! The cost of immunosuppressants needs to drop, especially the biologics!

Last time I checked a one week shot of Enbrel out of pocket was between $1,500.- $1,800. US dollars. And I have to ask if biologics are more available in Australia now, or still very difficult to have prescribed. I do know that if your blood tests do not come back positive, you do not get them, at least this is the info I have acquired from the members of the PsA group. Is this correct, if so has it changed?

I am very excited to see the B cell research taking place, as after 2 years on Enbrel, my immune system was just shot. Not sure I can resume any immunosuppresants again! See my Rheum this Friday for that discussion/consideration.

I think you are spot on about the calcium, and not sure if they have a ready supply of vitamin C either, I know the Chinese hold oranges in high regard, treating them like a delicacy! So could be something there as well as the calcium!

It still seems odd to me that the same drugs are given to a patient with an severe immune deficient disease, such as cancer, and also given for an autoimmune, where the immune system is in hyper overdrive! I haven't been able to wrap my brain around that one! Guess I need to dig deeper on that research!

Thanks so much for this additional info and your brilliant thoughts, keep 'em coming!

Wishing you well,

SK

Thank you so very much, Kaz, I was finally able to understand it, as you explained it to me as far as the ability to treat immune deficient and autoimmune with the same drug.

I most certainly agree with your closing remark, I think that most of us have certainly worked on diet, but not necessarily eliminating gluten and sugar. However you know the group better than I, so I could be totally wrong here! I go for all of the organic fruits and veggies I can find, many vegetables we grow here, in our raised beds, we also have our own grapes. I'm not a huge milk fan, and as far as meat, less and less of it more and more fresh caught fish, though mercury is a concern...

May I ask if you work in the medical field as your knowledge is substantial?

May I invite you to the natural healing group of the site, when I got here it had been opened with virtually no info, but several requests for it. I have added some things, but surely I do not have your knowledge, just a willingness to help keep this group in good standing, and of course to share and learn all that I possibly can! No pressure, just a link once in a while would be fantastic, if you would like!

As for D, I was amazed when one of our Australian scientists on the PsA site posted an interesting link on D as a hormone! Fish oil, absolutely, so beneficial, cal/mag as well!

Thank you again, I look forward to our journey together here!

http://www.sjogrenssyndromesupport.org/group/natural-healing-group

Ok, now I'm going to get my fish oil out of the freezer to check the dosage! My DC recommended I keep them there to prevent the indigestion they can cause me, helps a little, though I hear krill is easier to digest, just heard that on a TV commercial, so unsure of that!

http://www.anaboliclabs.com/User/Document/Fact_Sheets/Clinical_Omega_3_Fact_Sheet.pdf

This is what I have.

Thank you as well, it's been a pleasure!

Sleep tight!

Before I lose my train of thought on the D. When my Mom just recently broke her hip, her orthadedic surgeon prescribed 50,000 UNIT BR calcium daily! I had to look it up before I allowed her to take it, fearing it was a mistake and possibly toxic, that the only reason she could possibly benefit from a dose that high was if it promoted healing and that is exactly what it does! I had no idea!

I met with my rheumatologist on Monday who is on the SjS medical board and I tried to talk to him about research and future treatment options. His words were that they are looking more into B cell depletion for SjS and one of the anti-CD22 meds may be helpful Epratuzumab. CD22 is expressed on B cells, and here is the abstract from a study http://www.ncbi.nlm.nih.gov/pubmed/16859536 although it is from 2006 so IDK where they are at with it now. Unfortunately I don't see anything on clnicaltrials.gov referring to both it and SjS. Being a young male who began having symptoms in Januaray and just about to start my career, I'd greatly appreciate the scientific community doing more about this disease. I have no official diagnosis yet. Scheduled for a lip biopsy April 17...