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magistramarla
04-12-2010, 12:44 PM
Hi everyone,
This was the first of 10 presentations. Many of the doc's comments could apply to any AI disease. Many of us have an SJS overlap, so I think that many will find this helpful.

Overview of Sjogren’s Nancy L. Carteron, MD, FACR

Dr. Carteron is from San Francisco, and she is awesome! She began by stressing that we should build ourselves a “healing community” of docs that we can work with, and appoint one as “team captain” who can coordinate our care. She also recommended joining an online community and registering with the Sicca registry in San Francisco!
She discussed the general SJS symptoms of fatigue and dryness that we all know, but she also discussed how it affects all of the systems of our bodies.
A. Allergies are more common in SJS than in Lupus.

B. Skin, hair and nails Dry, itching, burning, cracked skin – exfoliate, moisturize and humidify Dermatitis – use topical steroids Yeast infections – topical or oral anti-fungals Chronic hives – prescriptions Photo sensitive (SSA positive) – sun precautions
Purpura – this is an important one – Those little red, raised spots on legs, thighs or trunk can signal vasculitis. Plaquenin and DMARDs can help with these.

C. Ear, nose, throat Dry, itchy ear canal – use vit. E or fish oil on Q-tip. Sensorioneural hearing loss – prednisone Otalgia – ear canal or ear drum inflammation Vertigo/dizzy/tinnitus – inner ear imbalance also called Autoimmune Inner Ear Disease - This explains the Meniere’s that I was dx’d with 12 years ago!

Dry sinus/nasal passages, chronic infections, allergies, swollen polyps Damage to nerves and nasal passages can lead to loss of smell/taste. Saline rinse, humidify, treat allergies & inflammation

Dry throat, problems swallowing, motility disorder, impaired nutrition, Larynx involvement – hoarseness, Vocal chord polyps This is why we need moistening agents for mouth & throat. The doc felt that my Spasmodic Dysphonia CAN be related to this!

D. GI Half of all SJS patients have GI problems. Here’s a list that she gave us: GERD, loss of appetite, chronic nausea, dysmotility/delayed gastric emptying, malabsorption, gluten allergy (celiac), difficulty swallowing, esophageal spasm, gastritis, constipation (from dryness), IBS, diarrhea, lymphoma of small bowel, autoimmune hepatitis, gall bladder problems, pancreatitis, biliary cirrhosis, celiac sprue, etc.

E. Vascular: Vasospasm = Raynaud’s Vasculopathy = abnormal vessels Vasculitis caused by inflammation of small vessels Pupura are small red/purple spots on legs, thighs, trunk

F. GYN: Vaginal/vulva dryness, yeast infections, etc. This is why KY is our friend! Can be hormonal symptoms can worsen peri-menses and during menopause, but dryness can’t always be blamed on menopause.

G. Urologic/kidney : Infections, Interstitial cystitis, Bladder pain syndrome all common in SJS Urinary frequency/increased volume, low potassium, nephritis

H. Lymphoma/Pseudolymphoma Non-Hodgkin’s B-cell most common, Mucosa associated lymphoid tissue affects GI tract, salivary gland T-cell is least common – multiple myeloma (plasma cells), leukemia, etc. 5-10% of SJS patients over lifetime.

I. Endocrine Thyroid dysfunction in 30% SJS patients. Hashimoto’s (low) Grave’s (high), adrenal glands and ovaries (premature ovarian failure)

J. Joints/Muscles: Joint pain is intermittent, asymmetrical, often in small joints. Erosions/deformity rare. Usually no swelling. Shoulders – synovial bx, lymphocytes

K. Males with Sjogren’s: Male:Female = 1:10 Urology problems common in males

Clues to primary SJS Diagnosis
• Many dental problems
• Abnormal wbc
• Rheumatoid factor w/o rheumatoid arthritis
• Vulvodynia
• Autonomic dysfunction/peripheral neuropathy
• GI dysmotility
• Recurrent sinus infections

1. How common is lymphoma, and how treatable is it? 5-10% of patients. This is spread out over a lifetime, and is highly treatable.
2. A friend who is battling AI issues and cancer wants to know whether AI issues can predispose to other cancers besides lymphoma? Lymphoma was the only cancer mentioned
3. Benlysta and other new drugs show promise for Lupus. Will they help SJS patients?
The docs seemed very hopeful about this type of drug (B cell inhibitors). They are anxious to begin studies with them on SJS patients.
4. How effective is IVIG? It was mentioned as a good alternative for some patients – everyone is different.
5. Will Rituxan be approved for SJS so that insurance will pay for it? There has been some success using it “off-label” for SJS and other autoimmune diseases. More use will tell.
6. What is the relationship between tendonitis and SJS?
7. How common are knee/joint problems resulting in surgery?
8. How common is disc disease?
9. Are the three above related to lack of moisture? One answer for #6-10. YES, lymphocytes can invade ANY tissues in any system.
10. Friend with Medicare wants to know which supplemental coverage would be best for SJS?
No answer on this, other than to get the most comprehensive coverage you can find.

OK, everyone. I hope that this "report" is helpful - 9 more to go. This may take a while! I have more detailed notes, so if anyone has a particular question, please PM me and I'll see if I have more info to give you.
Hugs,
Marla

DrinkofWtr
04-12-2010, 02:22 PM
Thanks for all this information, Magistramarla. Thanks for the excellent notes you took at the conference.

Nonna
04-13-2010, 04:32 AM
Being a teacher makes you the best reporter. thanks so much for the information. I hope there wil be a conference in my part of the country one of these days. Your reports are filling me with specific questions now.

thanks again marla

mountaindreamer
04-13-2010, 12:39 PM
wow, marla,

i found many of the issues that i face listed above....but, i never made the connection with SJS. I have printed this out, and will take with me to my next rheumy appt.

I did not know how interstitial cystitis fit in with everything else, now i am informed. Also, it never dawned on me that my latest battle with gallbladder problems was related to sjs.

thanks to you and bonus mom for attending the conference and reporting to us.

Saysusie
04-13-2010, 09:28 PM
Jeez;
Again, I've never been diagnosed with Sjogren's, but I have so many of the symptoms..like recurring sinus infections, delayed gastric emptying, malabsorption & others............:unsure:

abbasgirl
04-14-2010, 12:48 AM
Wow, Marla. Thanks! You have me looking up new SS topics!

Something I've learned recently that can be added to the GI SS symptoms are kidney stones. I nearly fell out of my chair when I found that one the other night!

A healing community of docs...very well put and so needed!!!

brandichi
04-20-2010, 10:50 AM
Wow! This is the first time I've been here in about a month, and this is the first thread I read. Fabulous information, thanks a million, Marla. I could see myself in nearly everything.