We had a very successful meeting on Saturday. There were 54 people who attended, if the room was larger, we would have invited more people that also tend to also have Sjogren’s, like my Scleroderma group. The Congressman, Sean Casten, and a District Director by the name of Anne Wick attended. Mr. Casten is a member of the Illinois House Science, Space, and Technology committee and is also on the research and Technology subcommittee. Mr. Casten has research protocol authority in the subcommittee.
Dr. Miloro was warm, compassionate and understood the challenges faced by Sjogren’s patients. She gave a wonderful presentation and covered just about every concern a patient with Sjogren’s would have. (She spoke for almost 2 hours!) Dr. Miloro patiently answered all questions and responded to comments surrounding the patient’s personal experiences with understanding.
The only handouts were printed directly from the Sjogren’s Syndrome Foundation, so I have nothing to upload.
Here is additional information you may or may not know:
You can ask your dentist for a prescription toothpaste called Prevident 5000 Plus.
To increase saliva production, you can ask your doctor for a prescription for Salgen in 5mg or 7.5mg.
One person shared she uses SQUIGLE. You can order it on Amazon $17.99 for a pack of 2 (4 oz. ea.) Information on package reads: Squigle contains no sodium lauryl sulfate so it is ideal for Canker Sore sufferers; Helps prevent Canker Sores, Dry Mouth, Mouth Ulcers, Perioral Dermatitis; SQUIGLE has 36% by weight of Xylitol (Made from birch and beech trees). The more Xylitol in your toothpaste, the less plaque buildup in your mouth. Plaque is an irritant that triggers canker sores. A leading canker sore toothpaste has only 10% Xylitol. Very mild peppermint flavor with no artificial colors, preservatives, colors, sweeteners; Contains Fluoride.
Another toothpaste pointer, some people cannot use anything with a mint flavor. A woman found that she has no problems if she uses Xyli-White Kid’s Toothpaste. You can find this at Fruitful Yield for $3.50 (I think they sell it at Whole Foods too).
For dry lips the dentist suggested lanolin, it’s much better than Vaseline or Chapstick and it lasts a lot longer. The brand name of this product is Lansinoh, you can find this at Walgreens in the baby aisle, Women use this product when they are breastfeeding.
Miscellaneous information: Oral surgeons can bill using medical codes, but there is no medical code for implants. This needs to change! Sjogren’s may affect nervous system, lungs and kidneys. Five percent of patients develop Lymphoma B. Although Raynaud’s is part of vasculitis, it can occur with Sjogren’s and R.A. A lot of people using smartpatients.com.
When I hear ANYTHING regarding any legislation, I will post it immediately!
Liz Suriano
Pbc
PBC Summit
Stages of PBC-Prognosis-Next Steps?
PBC 
Newly diagnosed to PBC - help please
