Hartford Patient Conference

[Navigator]

Hi

I went to the Hartford, Ct. Patient Conf. last weekend and there were about 150 people there, some husbands and wives. It was great. The next National Patient Conference will be in Reston VA. April 1-2 (a two day affair) for those who are interested.

First there was a big push to get patients and their families to talk about SJS and increase awareness.  They stated that there are more people with SJS in the US than those with Breast Cancer...but we do not have a life threatening illness and the drug companies look to invest their money in researching drugs where they feel there will be a big market with people interested in taking drugs.  The SJS Foundation did a survey and while people complained about this or that symptom they had; when they asked how would you rate your health ..people said good or very good...not condusive to getting big pharma to invest.   The SJS Foundation runs various events around the country and they encourage people to come ...and make SJS more visible to pharma and to donors who give money to research.

Right now the most promising avenue of research is to look at designing a less toxic Retuximab (sp?) so that it would be available to SJS patients. When the FDA approves drugs there is a cost/benefit analysis and if the side effects could be more devastating ..the drug becomes more limited in approved useage.

The first speaker was Ann Parke, a Ct. Rheum. who gave an overview of SJS.  While she called it the SLE of the endocrine glands she said that 50-60% Lupus patients have dsDNA antibodies which sets it apart.  Of our antibodies. if you have Anti-Ro you are more likely to have sun sensitivity, SJS and the possibility of neonatal Lupus syndrome (which could result in a heart defect in a newborn...good to have checked out if that is a possibility).

She said most people have autoantibodies at some level and it is only if they rise too much that you have problems.

SJS patients have a low risk (4%) of incuring B-cell lymphoma which often ends up being a low grade lymphoma and highly cureable.  Studies have suggested that Parotid enlargement, a low C4 (from your blood work) and palpable purpura (which are raised blotches usually on the legs) are predictive for possibly developing this so if you have them you should be sure to be closely evaluated.  People can be born with a genetic tendency to have low C4.

Of the SJS symptoms, 35% have a peripheral neuropathy (seems to be connected to anti-Ro) ,many  will have problems with feeling faint when getting up from lying down or sitting (the tilt table test), 16% Raynards, 15% Autoimmune thyroid disease, 12% cutaneous vasculitis.

Went over the dry mouth problem.. recommended the usual things, frequest dentist visits, obsessive cleaning and flossing, chew sugarless gum , flouride to harden teeth, probiotics (yogurt) to restore mouth flora, no refined sugar and limit snacking.   There was a discussion of salivary stimulants and she felt they did not help with eyes only saliva and felt that water was no substitute for your own saliva.

Went over the drugs. Likes Plaquenil alot.... low dose prednizone, methotrexate is used with TNF inhibitors but there you are getting into possibly drug induced Lupus so must really need more. , and hoping for rituximab if it can be made less harsh.  Rituximab is an anti B-cell agent.   Then just monitor for severe disease ie vasculitis, and malignancy.

The eye doc. who came on later likes Restasis. Says it decreases lymphcytic infiltration and reduces IL 6 levels (whatever that is ) in inflamed eyes.

In conclusion , felt that SJS is a close cousin to Lupus and often coxists with other autoimmune diseases...thyroid disease, celiac disease, PB cirrhosis, Reumatoid Arthritis and maybe MS.

The last interesting piece of info she stated was that it is most common in post menopausal women and that hormone manipulation in animals alters disease "expression".  No one yet had the time to ask her what does that mean??? Should we go on hormone therapy??? I am going to lob that in to the SJS Foundation to see what the answer is.

Finally ....she said new treatments are in clinical trials.  Which is hopeful.

The eye doc. when into deep detail on the structure of the eye and tears and if you don't have the slides it is too complicated to relate. He did however say that there is a contact lens "Scleral/Boston Prosthetic " that is used in serious cases and mitigates pain among other things...so maybe it is worth looking into as well as the use of autologuous serum which requires bimonthly blood drawing and they make up serum specifically for you. It includes some artificial tears but the benefit is that no artificial product can actually replicate what is in tears and this does it the best. 

Promoted eating Omega 3s, eat fish 4 times a week if you can, or you can eat ground flaxseed, or flaxseed oil tablets, or take 12 almonds or pecans daily, or primrose oil capsules (500mgm capsules, 1-3 capsules, 2 times a day), or 3000mg Omega 3 capsules.  He also mentioned the Thera Tear Nutritional SUpplement or HydroEye (which you can only get from the company) as options as well.   Oh big caveat was to check with your doctor of course before using any supplements especially those people on warfarin or coumadin.

Restasis notes:17% noticed stinging upon instillation, 3% may not tolerate and 75% have beneficial effect.  Increases tears and decreases inflamation. Said best candidates are those who use artificial tears 4 or more times a day. and you must have functioning lacrimal glands.

Went into lid problems as well and overall advocates a stepwise approach to therapy. 

The last doc. talked about measuring disease activitiy in SjS and the bottom line is at the moment they do not have a good way to do that. There is no reliable way to measure SJS disease activity. They are working on it in research.


So that is 10-4 in a nutshell. The best part was meeting all of those other people with this dsiease and comparing notes.

Hope this is helpful.

[Bucky]

Thanks Navigator for sharing what you learned at Conference.

Some day I hope to attend a Conference.

Did you meet any of "our" Sjoggie's there?

Bucky

[eyeamdry]

Thanks Navigator for an excellent report.  I think you gave us lots of information to ponder.  It's hard to try and enjoy attending these events (at a pretty price) and try and take notes for everyone else.  We appreciate it.  I liked the anti-RO info as I have that particular thing.  Lucy

[Navigator]

This was a New England crowd since most, myself included, drove up that morning. There were give aways., Biotene products (which most of us have); they were selling Tranquileyes and I admit I bought a pair..havent tried them yet, and something called GC MI Paste Plus which is to preserve your teeth. I remember that was talked about on this forum before.  Also sold the usual collection of books.   

I don't know if there were other forum members there.   It seemed the people at my table were not "veterans" as it were and several talked about support groups .   My group was two from Rhode Island, one Ct, two from Mass and I'm from NY.

[DragonflyC]

Great summary, Navigator!

I was especially interested in Dr. Parke referring to SJS as "mucosal SLE."  I wonder if we would get more respect if we started adopting that label, esp. among doctors who dismiss Sjogren's as simply a nuisance and people in the general public who think it's "just a syndrome."  Dr. Parke was very clear that Sjogren's is a "systemic autoimmune disease," and she repeated that point several times.

I was also excited that the Sjogren's Syndrome Foundation is working to create a guide to treating Sjogren's that they can distribute to doctors.  I'm lucky to have a great rheum, but there are certainly doctors out there who need to be brought into the modern era of Sjogren's treatment.

[DragonflyC]

Also, as Navigator said, there was a push for us to spread the word and to participate in clinical studies.  Steven Taylor, the SSF CEO, said that just calling a doctor's office to inquire about a study he/she is running can help even if we don't end up participating because it shows that people are interested.  He encouraged us to participate in SSF events, too, even if we can't do any fund raising. 

Additionally, Steven Taylor wanted us to know that there are fact sheets available on their web site.  We can order brochures for our doctors to hand out in their offices.  Even more helpful for us are the fact sheets, such as the one we can provide our caregivers if we need to have surgery (http://www.sjogrens.org/files/brochures/surgery_hospitals_medications.pdf). 

[shortstuff]

Ladies, you rock!  Thanks for the detailed info.  Seriously, there should be a 3 day walk for Sjogren's, 5Ks and 10Ks. Not to take away from breast cancer, but when I tell someone I have Sjogren's they've got no clue.  And I've realized when you describe it, it kinda sounds ridiculous.  But I don't think a healthy person can begin to realize how miserable life can be without tears and spit!

[kwolfsheimer]

Yes-- thank you for the info!!!

  I will wait for the Reston, Virginia conference since that will be in my "backyard."  Man!-- I might even pay for my rheumotologist (that I'm about to dump) to attend so he'll stop referring to Sjogren's as a "nuisance disease."

The note about the neuropathy was interesting because that is coming on strong for me lately.  I am SS-A (Ro) positive, so I may have to look into that.

[shevonne]

Yes Dragonfly and Navigator!  I was there; I wish I knew who you were.  I found it to be a great conference and it was the first time I have been to one as I said in the other thread.  I didnt expect to see so many people and was able to meet a lot of people.  I live in CT so it wasn't that far for me.  I was able to talk with Dr. Parke and she gave me her card to set up an appt because my rheumy is trying to figure out the weakness and numbness in my legs.  I really enjoyed it and wished I could have brought a family member along like another lady did that was at my table.

[DragonflyC]

Shevonne, it's really exciting that you're going to see Dr. Parke!  I loved her speech.  I hope that you'll report back what you learn from her when you go for your appointment.

I sat with one of my coworkers and his daughter (he doesn't have SJS, but she does).  Before she moved to PA, the daughter used to see Dr. Parke and she said that she's just as great as she seems.

I also sat with a woman who attends every SJS conference on the east coast, and a woman who flew in from CA just for the conference!  The woman from CA came because she was diagnosed recently and her daughter (in her early 20s) also tested positive for SJS--no symptoms yet for the daughter, thank goodness.  Neither had heard of this forum, so I gave them the web address. 

I agree that it would have been nice to have a family member along.  I invited my husband, but he feels pretty well informed about SJS already (and, in his defense, he really is).  I also thought about inviting my mom (esp. b/c she's a nurse), but it didn't quite seem worth the expense.  Now that I've been, though, I will definitely bring her to the next one if I go. 

Having attending, I really do encourage everyone to go.  I'm a voracious reader so I thought that I knew everything there was to know about SJS, but I learned a lot, especially from Dr. Parke and Steven Taylor.  I even enjoyed the speaker I thought would be too "touchy-feely-feel good" for me; her presentation was truly thought-provoking (I'll post some quotes in another thread).

It was a little pricey, but worth every penny.  Also, in the end, it cost less than I thought it would.  The two free bottles of eye drops and the tooth stuff carved a good $20-$30 or so off of the fee; loads of coupons, too.  Plus, I got to try on the new Tranquileyes sunglasses to see how they look, which makes me feel much more confident about ordering a pair without worrying that they will look bad or feeling like I'll have wasted time and money (on shipping even if I returned them) for nothing.  Speaking of those sunglasses, I was impressed with how discreet the foam inserts were; they looked OK, too--not super high quality frames (which I'm sure is to keep them light and to keep the price down), but fairly stylish.