Notes on Dr. Ann Parke's 10/2 SJS Seminar Speech--SJS Overview

[DragonflyC]

Dr. Ann Parke: "Overview of SJS"

If you ever get the chance to hear this woman talk, go.  She was incredible.  

SJS can be a severe disease
Should be called a disease
Not taken as seriously as it should be
Criterion still emphasize dryness, though other symptoms can present first
SLE of the mucus membranes
Systemic disease
94% women; often post-menopausal
Doctors need to think about it differently than they have before
Prob. the most common non-organ specific systemic disease
Particularly attracted to exocrine glands, but can affect other organs that are not glands

B-cells produce antibodies that help us fight infection; when they turn on us, they are auto-antibodies; the most common are anti-nuclear antibodies (ANA)
SJS w/ AI can get a variety of other neurological complaints (e.g., brain fog; treatment of disease CAN help)
SJS doesn't have a specific antibody (only 60% of SJS patients have Ro)

SJS crosses boundaries: seen in many AI diseases (all assoc. w/ thyroid, celiac, primary biliary cirrhosis)

Reassures us that it's a VERY SMALL percentage who develop lymphoma (4%); the majority dev. a well differentiated lymphoma that can be treated; often low-grade and very responsive to treatment; the medications we have are so good that it doesn't alter the lifespan in patients

Fatigue may be most disabling, but not taken seriously
Post-menopausal women are not taken seriously
American foundation has increased awareness; in Canada, people (inc. doctors) do not understand or listen?we need to inc. awareness


Normal people produce 1.5 liters of saliva daily (less at night)
Important to produce own saliva using gum and, if possible, evoxac or salagen
Eat yogurt daily: at least a few spoonfuls in a.m. and p.m. to put good organisms in mouth
Limit snacking

Plaquenil reduces inflammation, blood clotting, lowers lipid levels; reduces morbidity; outcome of patients on the drug seems to be better than for those not on it
Prednisone is an  excellent. anti-inflamm drug
Rituximab anti-B cell agent proving useful
Other anti B cell agents (anti BLys ): not yet approved by FDA, but trials are quite encouraging for lupus; trials are looking at SJS (Dr. Parke thinks we'll see even better results w/ SJS)
Cyclosporine A eye drops (e.g., Restasis): anti inflamm. treatment, not just coping

Evoxac and Salagen can't be taken by people w/ asthma or heart disease
Can increase GI motility
Important to take w/ or after food to slow absorption leads to fewer side effects (esp. sweating)

[Daisy1234]

Thank you for posting this information.  Was very very interesting and also validating too.

[bloodless]

I guess I need to start eating a little something in the morning when I take my first salagen (along with a boat load of other pills). Thanks for the post.

[jjj3]

Dragonfly - thank you for taking the time to post this info.  This Dr. sounds great and this info is also encouraging.  I'm wondering, did she say why she expects anti BLys agents to perform better for SJS in trials than for Lupus?  Also, I think it's interesting that she recommends taking Salagen or Evoxac with food.  For me, they work much better on an empty stomach.  I can tell a huge difference in how much saliva I get and how long it lasts based on whether or not I take them on an empty stomach (and I agree with her comment about sweating - I sweat more when I take them on an empty stomach, but it's a price I'm willing to pay).

You are so kind to pass along all of this info.  It is much appreciated.

Cathy

[LeoLady]

Thanks Dragonfly!  Great synopsis.

Hugs,

LeoLady

[DragonflyC]

You're welcome!  Typing helps me stay focused (I have a more than a bit of ADHD), so I just scribed the whole time I was at the conference.

Cathy, she didn't provide any information about why.  My guess is that it's because of Dr. Faustman's research into B-cells, which indicate that they may be especially helpful with curing (!) diabetes and the dry mouth part (and possibly other parts as well) of SJS.