Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 Hi , First rule is ........Don't Panic !! :-)) I'm sure you've got enough to worry about without any extra's being added, right? <caring hug> How about getting that test done again before you go any further, that will at least put your mind at rest one way or the other. As for Sjogren's.......'IF' you need to study it further there are several places on the web that you can get info from and also a site for getting in touch with others who have Sjogren's, me included:-)) I've had it for over 30 years ( I have a 'mild dose' ) and the good news is that it's not regarded as being life threatening, just very inconvenient if one has a 'bad dose.' I know all this stuff is scary, but hang in there and try to be positive, we're all behind you and we're sending you lots of good vibes:-)) hugs, lisbeth rheumatic sjogrens >From: M Carroll <LCARROLL@...> > >Hello all, > Please....HELP! I fear I am getting sjogrens as I have many of the >symptoms ( gastic problems, thirst, burning tongue, fatigue, dry mouth). I >am scared to death as I have so much to deal with just with the RA. I have >gone so downhill since starting the AP two years ago that it is >discouraging and scary. First with the increased joint pain and stiffness, >then the bad blood tests, and now this. >If anyone has any suggestions or advice about sjogrens please let me hear >from you as I would like to sk a few questions. >I had a sjogrens test last APril that was negative but that was routine and > before the symptoms started. >Thanks so much, > C > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 [unable to display image]In a message dated 11/6/99 7:21:57 PM Eastern Standard Time, lisbeth@... writes: << I've had it for over 30 years ( I have a 'mild dose' ) and the good news is that it's not regarded as being life threatening, just very inconvenient if one has a 'bad dose.' >> I don't meant to scare anyone but in some people Sjogren's can be more than very inconvenient and in rare cases can cause death. Sjogren's can affect one's lungs, kidneys, GI tract and other organs and there is an increased risk of lymphoma associated with it. I think with any of these illnesses it depends on the degree to which you have it. I find, however, that some people dismiss Sjogren's as being nothing more than dry eyes and mouth and unfortunately it can be much more than this. I have included more information on Sjogren's below. Again, I don't mean to scare anyone and I hope this information helps. Carol E from NY SJOGREN'S SYNDROME WELCOME PACKET Hi--below is information/resources regarding Sjogren's Syndrome. If you want to be added to the list to receive a copy of the Sjogren's Syndrome Chat Log and a Reminder about chat meetings, please e-mail either BHostCares@... (aka Carol) or ScootRN2@... (aka Myra). The log and the chat usually go out on late Sunday night, but if possible we try to get it out earlier. Carol & Myra *******************************************************************************\ *********** ******** Sjogren's Syndrome (Adapted from the pamphlet originally prepared for the Arthritis Foundation by Friedlaender, M.D. Elaine , F. , M.D. Sciubba, M.D. P. Tesser, M.D. and Norman Tallal, M.D. This material is protected by copyright.) In Sjogren's syndrome, changes occur in the immune system - the body's defense against disease. In Sjogren's, the immune system lacks the usual controls. This causes white blood cells to invade glands in the body that produce moisture, such as the tear and salivary glands, and the Bartholins glands in the vagina. They can destroy the glands and cause them to stop producing moisture. Sjogren's syndrome can also cause problems in other parts of the body, including the joints, lungs, muscles, kidneys, nerves, thyroid gland, liver, pancreas, stomach, and brain. In people with no other health problems, the most common early symptom is the onset of severe dry mouth and eyes. In people with rheumatoid arthritis or related conditions, dry eyes and mouth develop more slowly. In this case, Sjogren's may be difficult to diagnose. Sjogren's syndrome affects everyone differently. You may not have every symptom listed here, and you may have only minor problems with those you do have. The symptoms may seem worse at some times than at others. Symptoms include: Dry mouth: The mouth normally contains saliva, which aids chewing and swallowing. In people with Sjogren's syndrome, the amount of saliva is much less. This makes chewing, swallowing, and speaking difficult. It may also cause a decreased sense of taste. Dry eyes: Your eyes may feel dry, " gritty, " or " sandy. " They may burn and look red. A thick substance may accumulate in the inner corner of your eyes while you sleep. Your eyes may be more sensitive to sunlight. If not properly treated, Sjogren's syndrome can lead to ulcers of the cornea (the clear covering of the eyeball}. On rare occasions, this can cause blindness. Swollen salivary glands: There are three set of glands that produce saliva. They're located under your tongue, in the cheeks in front of your ears, and in the back of your mouth. They may feel swollen and tender. This may occur along with a fever. This affects about one-half of people with the disorder. Dental cavities: This is a common problem that results from a dry mouth. Saliva fights bacteria and defends against cavities. Because you have decreased saliva, your teeth may develop cavities more easily. Dry nose, throat, and lungs: This may make your throat feel dry and tickly. You may have a dry cough, hoarseness, a decreased sense of smell, and nosebleeds. It can also lead to pneumonia, bronchitis, and ear problems. Dryness of the vagina: This can cause painful intercourse for women with Sjogren's syndrome. Fatigue is a common complaint. You may get easily exhausted and feel tired and worn out. Other problems: Sjogren's syndrome can affect other parts of the body, such as blood vessels, the nervous system, muscles, skin, and other organs. This can lead to muscle weakness, confusion and memory problems, dry skin, and feelings of numbness and tingling. Sjogren's syndrome can also affect the liver and pancreas. When it does, there is a greater chance for developing cancer of the lymph tissue. Although this is unusual, it is one reason why medical exams and continued follow-up are important. The causes of this condition are not known. There is some evidence that viral infections, heredity, and hormones may in some way contribute to Sjogren's syndrome. Sjogren's syndrome can affect people of any race and any age. It usually affects women. It affects more than one million people in the U.S. Your doctor may do several things to find out if you have Sjogren's syndrome. This includes: Physical examination: Your doctor will ask you to describe your symptoms, and will look for other symptoms, such as red, itchy eyes; swollen salivary glands; a dry, cracked tongue; and enlarged lymph glands in your neck. Blood tests: Tests for specific blood markers can determine if you have Sjogren's syndrome. However, not everyone with Sjogren's has these markers. Schirmer test: This helps determine how dry your eyes may be. It involves placing a small piece of filter paper under the lower eyelid to measure the amount of tears your eyes produce. Slit-lamp examination: This is a more accurate way to find out if your eyes are dry. In this test, the doctor puts a drop of dye into your eye and examines the eye with a special instrument called a slit lamp. The dye will stain dry or eroded areas of the eye. This test is often done by an ophthalmologist (eye doctor}. Lip biopsy: In this test, the doctor removes a few salivary glands from inside your lip. The tissue is examined under a microscope. The appearance of the tissue helps determine if you have Sjogren's syndrome. Salivary function tests: These measure the actual amount of saliva you produce, to help determine if you have Sjogren's. Urine tests: These may be done to test your kidney function. Chest x-ray: This can help detect changes in your lungs. As yet, there is no cure for Sjogren's syndrome. But proper treatment can help relieve symptoms so you can live a comfortable and productive life. The main goal of treatment is to relieve discomfort and lessen the effects of the dryness. Since Sjogren's syndrome affects everyone differently, your treatment plan will be based on your specific needs. Your treatment may include different ways to relieve your symptoms, such as those listed below. If you have arthritis or another condition, you will also want to follow specific treatment for that condition. See your family doctor and your dentist regularly. Since Sjogren's syndrome can affect many parts of the body, regular checkups can help detect and prevent future problems. You may also need regular check ups with an arthritis specialist) and an eye specialist. For dry mouth: * Sip fluids throughout the day. * Use sugar-free gum or candies to stimulate saliva production. * Try saliva substitutes or mouth coating products. They may be useful in some people, and are available without a prescription. To prevent dental cavities: * Have frequent dental checkups. * Use mouth rinses that contain fluoride. * Brush and floss your teeth regularly. * Use sugar-free products. For dry eyes: * Use artificial tears or eye drops to help relieve the discomfort of dry eyes. Use preservative-free products, if you apply the drops more than four times per day. * Try lubricating ointments or small, long-acting pellets for overnight or long-lasting relief. * Your ophthalmologist may recommend a simple operation that blocks tear drainage from your eye. For dry skin: * Use moisturizing lotions for sensitive skin. * Avoid drafts from air conditioners, heaters, and radiators, when possible. * Use a humidifier in your house and at work. For vaginal dryness: * Use lubricants made specifically to help vaginal dryness. Do not use petroleum jelly. Medications Aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs) help reduce joint swelling and stiffness, as well as muscle aches. If you have serious complications, your doctor may recommend stronger medicines. Exercise Mild exercise, such as walking or swimming, can help keep joints and muscles flexible. Exercise may also protect against further joint damage. A note about pregnancy: A certain blood marker often found in women with Sjogren's syndrome can, very rarely, be associated with heart problems in newborn babies. If you're a woman with Sjogren's syndrome who is planning to become pregnant, see your doctor about testing for this marker. If it is present, ask your doctor whether pregnancy is advisable. If you do become pregnant, you and your doctor can work out the best plan to manage the situation. Sjogren's syndrome is generally not life-threatening. The outlook for people with this condition is usually good. Dryness, however, may last for the rest of your life. By using artificial moisture and practicing good oral hygiene, you can help prevent serious problems. If you have Sjogren's syndrome and a rheumatic disease, make sure you follow your doctor's complete treatment program. The Arthritis Foundation Contact your local chapter of the Arthritis Foundation for more information about Sjogren's Syndrome. The following booklets may be useful: * Coping with Pain * Coping with Stress * Exercise and Your Arthritis * Rheumatoid Arthritis * Scleroderma * Systemic Lupus Erythematosus National Sjogren's Syndrome Association PO Box 22066, Beachwood, OH 44122. The National Sjogren's Syndrome Association is an international, nonprofit all volunteer organization dedicated to providing educational information to patients and health professionals worldwide. Sponsors support groups and national and regional conferences. Publishes: a national newsletter, the Sjogren's Digest; a quarterly collection of articles, Patient Education Series; and a patient guide, Learning to Live with Sjogren's Syndrome. Sjogren's Syndrome Foundation Inc. 382 Main Street Port Washington, NY 11050 (516) 767-2866 or 1-800-4-SJOGREN. The Sjogren's Syndrome Foundation, Inc. is an international organization that provides materials, educational programs, and support groups throughout the U.S. and abroad. Publishes Sjogren's Syndrome Handbook: An Authoritative Guide for Patients and a monthly Moisture Seekers Newsletter. Adapted from the pamphlet originally prepared for the Arthritis Foundation by Friedlaender, M.D. Elaine , F. , M.D. Sciubba, M.D. P. Tesser, M.D. and Norman Tallal, M.D. This material is protected by copyright. *******************************************************************************\ *********** ******** REFERENCES ON SJOGREN'S SYNDROME The New Sjogrens Syndrome Handbook. (1998). Edited by Carsons, M.D. and Elaine K. . New York: Oxford University Press. 230 pgs, Hardcover. Understanding Sjogren's Syndrome. (1993). By Sue Dauphin. Tequesta, FL: Pixel Press. 245 pgs, Paperback. Learning to Live with Sjogren's Syndrome. By Sefra Pitzele. 32 pages. Obtained from NSSA. WEB SITES http://www.sjogrens.com/ <A HREF= " aol://2719:2-2-Sjogrens " >Sjogrens</A> --Sjogren's Syndrome Foundation http://www.sjogrens.org <A HREF= " http://www.sjogrens.org/ " >Welcome to the NSSA Home Page</A> --National Sjogren's Syndrome Association http://www.healthlinkusa.com/282.htm <A HREF= " http://www.healthlinkusa.com/282.htm " >Sjogren's Syndrome Treatment, Prevention, Cure</A> http://www.silcom.com/~sblc/sjogrens.html <A HREF= " http://www.silcom.com/~sblc/sjogrens.html " >Sjogren's Syndrome</A> http://www.dry.org/ http://www.aarda.org/ --American Autoimmune Related Diseases Association http://members.aol.com/mycircle/index.htm --This is an excellent web page for links to various autoimmune illnesses and general health info, etc http://www.amazon.com/ --Amazon Books http://www.roadback.org/ --Info on Antibiotics and Road Back Foundation http://www.rheumatic.org/index.shtml --Info on Antibiotic Treatment <A HREF= " http://www.betterhealth.com/ " >allHealth</A> <A HREF= " aol://4344:308.BHmain.682006.579041958 " > Better Health is now allHealth.com! </A> http://www.aolhealth.com Keyword: allhealth You can also search the web yourself by checking out Sjogren's on various search engines such as , Excite, and many others. And you can do a search on Medline (Keyword: Medline on AOL). The Sjogren's Syndrome Foundation can be reached at 1-800-4-SJOGREN or (516) 933-6365 or (516) 933-6368 (Fax) or by writing to 333 North Broadway, Jericho, NY 11753 Ask for a packet of information--they will send you this and it includes their newsletter, The Moisture Seekers, as well as information about the Sjogren's Syndrome Handbook. The other association is the National Sjogren's Syndrome Association (NSSA) and they are located in Phoenix, AZ--call 1-800-395-NSSA:they to will send you information. You can also reach the NSSA, National Sjogren's Syndrome Association, at America Online by sending mail to NSSA@... or writing to PO Box 22066, Beachwood, OH 44122. Phone calls should be made to: (216) 292-3866 or (800) 395-NSSA; fax messages to (216) 292-4955. Their website address is www.sjogrens.org To join the NSSA,the annual dues are $25 and that automatically enrolls you to receive the Sjogren's Digest, which is published about 4 times a year I think. Also, you will occassionally receive patient education sheets regarding new findings about S.S. You can sign onto various lists by going to the following web site by clicking on the following link <A HREF= " http://www.dry.org/community.html " >People with Sjogren's</A> or go to http://www.dry.org/community.html. The Sjogren's Syndrome chat on America Online (AOL) meets every Tuesday at 7 p.m. ET at the Equal Access Cafe. o get there, click here E<A HREF= " aol://2719:3-235-Equal%20Access%20Cafe " >qual Access Cafe</A> or KEYWORD : BHCHAT and then click on the icon that says All Chat Rooms (lower left side) and then go to icon that says Equal Access Cafe. Also, you can create a private chat for Sjogren's Syndrome by <A HREF= " aol://2719:2-2-Sjogrens " >Cli cking here: Sjogrens</A>. So whenever you want you can check and see if someone else has created a private room called Sjogren's and is in it or you can be the one to create this room! For quicker access put this link in your Favorite Places too! Since this is a private chat it will not be facilitated by an AOL host. AOL also has a Sjogren's Syndrome Message Center so click here <A HREF= " aol://5863:126/mB:108332 " >Sjogren's Syndrome</A> to get there and then put this link in your Favorite Places or Keyword: Better Health and then click on: Icon that says Message Boards and scroll down until you see Self Help & Support Groups and then scroll down until you see Sjogren's Syndrome and hit enter. Public chat logs from our Sjogren's Syndrome Chats are now available in the Software Library in the Better Health Forum. After the logs is uploaded to AOL, their staff takes a couple of days to review the logs and check for viruses before listing them in the library. To get there, click here <A HREF= " aol://4400:33335 " >Chat Transcripts M-Z</A> , and you can save this link in your Favorite Places. Then find the SS Chat for date wanted and click the download button. c ******************************************************************************* ********************** TIPS FOR PATIENTS WITH SJOGREN'S SYNDROME 1. Humidify your bedroom. If you have forced air heat or central AC, humidify house. 2. Call 1-8OO-SJOGRENS to become a member of the Foundation and receive the very helpful newsletter, Moisture Seekers 3. For Raynauds Phenomenon: outdoor-clothing stores sell sock liners and glove liners that help retain heat. 4. For dry, itchy skin: soak in lukewarm water at least 20 minutes. Dab off only droplets of water and quickly and liberally apply occlusive lotion, or if very severe, Vaseline. After itching is under control, soak only weekly and bathe " strategically " on daily basis. Rub Eucerin creme or similar product in soles of feet at bedtime. 5. For vaginal dryness, use KY or similar waterbased product, nightly for itching, as needed for intercourse, and on tampon as needed. 6. For sinus, nose, throat dryness: Stop all use of decongestants. Irrigate nose with sterile saline during colds, etc. Bend over a sink, tilt head 90 degrees to one side and squirt in saline until it drips from other nostril or runs down throat. Tilt in reverse direction and irrigate other side. If no saline drips out, stop. Keep saline with you on airplanes and other dry environments to wet the nasal membranes. Celluvisc can be snorted to relieve nose and throat, especially if you often wake with a sore throat, use Celluvisc at night. 7. For dry eye: if you use an artificial tear more than four times a day, use a nonpreserved product. Use the tears before the eyes start to hurt. Learn to blink more often and more completely especially when reading, watching TV or using a computer. Side shields are helpful in the car to keep defroster or AC from drying out your eyes. If your eyes are sore in the morning when you wake up or there is dried mucus in the corners, try Celluvisc or even a heavier lubricant at bedtime. IT WILL BLUR YOUR VISION AT THE TIME! If you find yourself frustrated with using the drops so frequently or the combined methods above are not sufficient, talk to your optometrist about collagen plugs. If they bring relief and you have no excess tearing, heishe can insert permanent plugs or refer you for cautery of the drainage ducts. Dry eyes from primary SS can be very severe and you should see your eye care practitioner frequently. 8. For dry mouth: Dental examinations every three months are a must. You must also use a fluoride treatment prescribed by a dentist. Make sure you find a dentist who is very familiar with Sjogren's Syndrome. You should floss and brush every time you eat. If this is not always possible, at least rinse the mouth with water. Avoid sugar because tooth and gum disease are much more likely when you have less saliva. Still, it is better to have two cups of coffee with sugar in the morning and then clean your teeth than to have one cup in the morning and one cup in the afternoon. Drink water or sugar free sodas. Report sore on the lips or in the mouth to your dentist immediately. To help stimulate salivation, you may want to suck on a sugar-free candy or chew sugar-free gum. There are saliva substitutes available in the drug store without a prescription, but many patients prefer to wash down their food with water. If your problem is more severe, discuss medications that stimulate salivation with your rheumatologist. 9. For dry bronchi and sinuses, there are individual humidifiers, frequently used by singers, that reduce wheezing and pain. Developed by E. Marren, OD, FMO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 In a message dated 11/6/99 7:21:57 PM Eastern Standard Time, lisbeth@... writes: << I know all this stuff is scary, but hang in there and try to be positive, we're all behind you and we're sending you lots of good vibes:-)) >> PS--And I agree with this 100%! Carol E from NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 Hi Carol, My apologies if you thought that I was trying to make light of Sjogren's. I am well aware of 'what' it is and certainly did not intend to give that impression. My thought was simply to try and take the positive approach as I believe one's own mind set is a very powerful tool in health and healing and can be used successfully in this manner. Sjogrens is not regarded as life threatening as such though deaths can occur as they can with any disease (RA etc. included). As you rightly point out it's one of those diseases that can either be light or more severe but as I understand it the more severe symptoms are in the minority. Thanks for the article, it's good to be informed<smile>I have it on file myself and I think the thing to focus on is ...'you can live a comfortable and productive life,'..... rather than worry about all the things listed there that one might never get. Lets all be positive and pray that doesn't have it !! <smile> hugs, lisbeth Re: rheumatic sjogrens >From: Careabxs@... > >[unable to display image]In a message dated 11/6/99 7:21:57 PM Eastern >Standard Time, lisbeth@... writes: > ><< I've had it for over 30 years ( I have a 'mild dose' ) and the good news is > that it's not regarded as being life threatening, just very inconvenient if > one has a 'bad dose.' >> > >I don't meant to scare anyone but in some people Sjogren's can be more than >very inconvenient and in rare cases can cause death. Sjogren's can affect >one's lungs, kidneys, GI tract and other organs and there is an increased >risk of lymphoma associated with it. I think with any of these illnesses it >depends on the degree to which you have it. I find, however, that some >people dismiss Sjogren's as being nothing more than dry eyes and mouth and >unfortunately it can be much more than this. I have included more >information on Sjogren's below. Again, I don't mean to scare anyone and I >hope this information helps. >Carol E from NY > >SJOGREN'S SYNDROME WELCOME PACKET > >Hi--below is information/resources regarding Sjogren's Syndrome. If you want >to be added to the list to receive a copy of the Sjogren's Syndrome Chat Log >and a Reminder about chat meetings, please e-mail either BHostCares@... >(aka Carol) or ScootRN2@... (aka Myra). The log and the chat usually go >out on late Sunday night, but if possible we try to get it out earlier. > >Carol & Myra > > >************************************************************************** **************** >******** >Sjogren's Syndrome (Adapted from the pamphlet originally prepared for the >Arthritis Foundation by Friedlaender, M.D. Elaine , F. >, M.D. Sciubba, M.D. P. Tesser, M.D. and Norman Tallal, M.D. >This material is protected by copyright.) > >In Sjogren's syndrome, changes occur in the immune system - the body's >defense against disease. In Sjogren's, the immune system lacks the usual >controls. This causes white blood cells to invade glands in the body that >produce moisture, such as the tear and salivary glands, and the Bartholins >glands in the vagina. They can destroy the glands and cause them to stop >producing moisture. > >Sjogren's syndrome can also cause problems in other parts of the body, >including the joints, lungs, muscles, kidneys, nerves, thyroid gland, liver, >pancreas, stomach, and brain. > >In people with no other health problems, the most common early symptom is the >onset of severe dry mouth and eyes. In people with rheumatoid arthritis or >related conditions, dry eyes and mouth develop more slowly. In this case, >Sjogren's may be difficult to diagnose. > >Sjogren's syndrome affects everyone differently. You may not have every >symptom listed here, and you may have only minor problems with those you do >have. The symptoms may seem worse at some times than at others. > >Symptoms include: > >Dry mouth: The mouth normally contains saliva, which aids chewing and >swallowing. In people with Sjogren's syndrome, the amount of saliva is much >less. This makes chewing, swallowing, and speaking difficult. It may also >cause a decreased sense of taste. > >Dry eyes: Your eyes may feel dry, " gritty, " or " sandy. " They may burn and >look red. A thick substance may accumulate in the inner corner of your eyes >while you sleep. Your eyes may be more sensitive to sunlight. If not >properly treated, Sjogren's syndrome can lead to ulcers of the cornea (the >clear covering of the eyeball}. On rare occasions, this can cause blindness. > > >Swollen salivary glands: There are three set of glands that produce saliva. >They're located under your tongue, in the cheeks in front of your ears, and >in the back of your mouth. They may feel swollen and tender. This may occur >along with a fever. This affects about one-half of people with the disorder. > > >Dental cavities: This is a common problem that results from a dry mouth. >Saliva fights bacteria and defends against cavities. Because you have >decreased saliva, your teeth may develop cavities more easily. > >Dry nose, throat, and lungs: This may make your throat feel dry and tickly. >You may have a dry cough, hoarseness, a decreased sense of smell, and >nosebleeds. It can also lead to pneumonia, bronchitis, and ear problems. > > >Dryness of the vagina: This can cause painful intercourse for women with >Sjogren's syndrome. > >Fatigue is a common complaint. You may get easily exhausted and feel tired >and worn out. > >Other problems: Sjogren's syndrome can affect other parts of the body, such >as blood vessels, the nervous system, muscles, skin, and other organs. This >can lead to muscle weakness, confusion and memory problems, dry skin, and >feelings of numbness and tingling. > >Sjogren's syndrome can also affect the liver and pancreas. When it does, >there is a greater chance for developing cancer of the lymph tissue. Although >this is unusual, it is one reason why medical exams and continued follow-up >are important. The causes of this condition are not known. There is some >evidence that viral infections, heredity, and hormones may in some way >contribute to Sjogren's syndrome. > >Sjogren's syndrome can affect people of any race and any age. It usually >affects women. It affects more than one million people in the U.S. > > >Your doctor may do several things to find out if you have Sjogren's syndrome. >This includes: > >Physical examination: Your doctor will ask you to describe your symptoms, and >will look for other symptoms, such as red, itchy eyes; swollen salivary >glands; a dry, cracked tongue; and enlarged lymph glands in your neck. > > >Blood tests: Tests for specific blood markers can determine if you have >Sjogren's syndrome. However, not everyone with Sjogren's has these markers. > > >Schirmer test: This helps determine how dry your eyes may be. It involves >placing a small piece of filter paper under the lower eyelid to measure the >amount of tears your eyes produce. > >Slit-lamp examination: This is a more accurate way to find out if your eyes >are dry. In this test, the doctor puts a drop of dye into your eye and >examines the eye with a special instrument called a slit lamp. The dye will >stain dry or eroded areas of the eye. This test is often done by an >ophthalmologist (eye doctor}. > >Lip biopsy: In this test, the doctor removes a few salivary glands from >inside your lip. The tissue is examined under a microscope. The appearance of >the tissue helps determine if you have Sjogren's syndrome. > >Salivary function tests: These measure the actual amount of saliva you >produce, to help determine if you have Sjogren's. > >Urine tests: These may be done to test your kidney function. > >Chest x-ray: This can help detect changes in your lungs. > >As yet, there is no cure for Sjogren's syndrome. But proper treatment can >help relieve symptoms so you can live a comfortable and productive life. The >main goal of treatment is to relieve discomfort and lessen the effects of the >dryness. Since Sjogren's syndrome affects everyone differently, your >treatment plan will be based on your specific needs. > >Your treatment may include different ways to relieve your symptoms, such as >those listed below. If you have arthritis or another condition, you will also >want to follow specific treatment for that condition. > >See your family doctor and your dentist regularly. Since Sjogren's syndrome >can affect many parts of the body, regular checkups can help detect and >prevent future problems. You may also need regular check ups with an >arthritis specialist) and an eye specialist. > >For dry mouth: >* Sip fluids throughout the day. >* Use sugar-free gum or candies to stimulate saliva production. >* Try saliva substitutes or mouth coating products. They may be useful in >some people, and are available without a prescription. > >To prevent dental cavities: >* Have frequent dental checkups. >* Use mouth rinses that contain fluoride. >* Brush and floss your teeth regularly. >* Use sugar-free products. > >For dry eyes: >* Use artificial tears or eye drops to help relieve the discomfort of dry >eyes. Use preservative-free products, if you apply the drops more than four >times per day. >* Try lubricating ointments or small, long-acting pellets for overnight or >long-lasting relief. >* Your ophthalmologist may recommend a simple operation that blocks tear >drainage from your eye. > >For dry skin: >* Use moisturizing lotions for sensitive skin. >* Avoid drafts from air conditioners, heaters, and radiators, when possible. > >* Use a humidifier in your house and at work. > >For vaginal dryness: >* Use lubricants made specifically to help vaginal dryness. Do not use >petroleum jelly. > >Medications >Aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs) help reduce joint >swelling and stiffness, as well as muscle aches. > >If you have serious complications, your doctor may recommend stronger >medicines. > >Exercise >Mild exercise, such as walking or swimming, can help keep joints and muscles >flexible. Exercise may also protect against further joint damage. > >A note about pregnancy: A certain blood marker often found in women with >Sjogren's syndrome can, very rarely, be associated with heart problems in >newborn babies. If you're a woman with Sjogren's syndrome who is planning to >become pregnant, see your doctor about testing for this marker. If it is >present, ask your doctor whether pregnancy is advisable. If you do become >pregnant, you and your doctor can work out the best plan to manage the >situation. > >Sjogren's syndrome is generally not life-threatening. The outlook for people >with this condition is usually good. Dryness, however, may last for the rest >of your life. By using artificial moisture and practicing good oral hygiene, >you can help prevent serious problems. > >If you have Sjogren's syndrome and a rheumatic disease, make sure you follow >your doctor's complete treatment program. > >The Arthritis Foundation > >Contact your local chapter of the Arthritis Foundation for more information >about Sjogren's Syndrome. The following booklets may be useful: > >* Coping with Pain >* Coping with Stress >* Exercise and Your Arthritis >* Rheumatoid Arthritis >* Scleroderma >* Systemic Lupus Erythematosus > >National Sjogren's Syndrome Association PO Box 22066, Beachwood, OH 44122. > > >The National Sjogren's Syndrome Association is an international, nonprofit >all volunteer organization dedicated to providing educational information to >patients and health professionals worldwide. Sponsors support groups and >national and regional conferences. Publishes: a national newsletter, the >Sjogren's Digest; a quarterly collection of articles, Patient Education >Series; and a patient guide, Learning to Live with Sjogren's Syndrome. > > >Sjogren's Syndrome Foundation Inc. 382 Main Street Port Washington, NY 11050 >(516) 767-2866 or 1-800-4-SJOGREN. The Sjogren's Syndrome Foundation, Inc. >is an international organization that provides materials, educational >programs, and support groups throughout the U.S. and abroad. Publishes >Sjogren's Syndrome Handbook: An Authoritative Guide for Patients and a >monthly Moisture Seekers Newsletter. > >Adapted from the pamphlet originally prepared for the Arthritis Foundation by > Friedlaender, M.D. Elaine , F. , M.D. >Sciubba, M.D. P. Tesser, M.D. and Norman Tallal, M.D. This material is >protected by copyright. > > >************************************************************************** **************** >******** > >REFERENCES ON SJOGREN'S SYNDROME > >The New Sjogrens Syndrome Handbook. (1998). Edited by Carsons, M.D. >and Elaine K. . New York: Oxford University Press. 230 pgs, >Hardcover. > >Understanding Sjogren's Syndrome. (1993). By Sue Dauphin. Tequesta, FL: >Pixel Press. >245 pgs, Paperback. > >Learning to Live with Sjogren's Syndrome. By Sefra Pitzele. 32 pages. >Obtained from NSSA. > >WEB SITES > >http://www.sjogrens.com/ <A HREF= " aol://2719:2-2-Sjogrens " >Sjogrens</A> >--Sjogren's Syndrome Foundation >http://www.sjogrens.org <A HREF= " http://www.sjogrens.org/ " >Welcome to the >NSSA Home Page</A> --National Sjogren's Syndrome Association >http://www.healthlinkusa.com/282.htm <A >HREF= " http://www.healthlinkusa.com/282.htm " >Sjogren's Syndrome Treatment, >Prevention, Cure</A> >http://www.silcom.com/~sblc/sjogrens.html <A >HREF= " http://www.silcom.com/~sblc/sjogrens.html " >Sjogren's Syndrome</A> >http://www.dry.org/ >http://www.aarda.org/ --American Autoimmune Related Diseases Association > >http://members.aol.com/mycircle/index.htm --This is an excellent web page for >links to various autoimmune illnesses and general health info, etc >http://www.amazon.com/ --Amazon Books >http://www.roadback.org/ --Info on Antibiotics and Road Back Foundation > >http://www.rheumatic.org/index.shtml --Info on Antibiotic Treatment > ><A HREF= " http://www.betterhealth.com/ " >allHealth</A> <A >HREF= " aol://4344:308.BHmain.682006.579041958 " > Better Health is now >allHealth.com! </A> >http://www.aolhealth.com >Keyword: allhealth > >You can also search the web yourself by checking out Sjogren's on various >search engines such as , Excite, and many others. And you can do a >search on Medline (Keyword: Medline on AOL). > > >The Sjogren's Syndrome Foundation can be reached at 1-800-4-SJOGREN or (516) > >933-6365 or (516) 933-6368 (Fax) or by writing to 333 North Broadway, > >Jericho, NY 11753 Ask for a packet of information--they will send you > >this and it includes their newsletter, The Moisture Seekers, as well as > >information about the Sjogren's Syndrome Handbook. The other > >association is the National Sjogren's Syndrome Association >(NSSA) and they are located in Phoenix, AZ--call >1-800-395-NSSA:they to will send you information. > >You can also reach the NSSA, National Sjogren's Syndrome Association, at > >America Online by sending mail to NSSA@... or writing to PO Box 22066, >Beachwood, OH 44122. Phone calls should be made to: (216) 292-3866 or (800) >395-NSSA; fax messages to (216) 292-4955. Their website address is >www.sjogrens.org >To join the NSSA,the annual dues are $25 and that automatically enrolls >you to receive the Sjogren's Digest, which is published about 4 times a > >year I think. Also, you will occassionally receive patient education > >sheets regarding new findings about S.S. > >You can sign onto various lists by going to the following web site by >clicking on the following link ><A HREF= " http://www.dry.org/community.html " >People with Sjogren's</A> or go >to http://www.dry.org/community.html. > >The Sjogren's Syndrome chat on America Online (AOL) meets every Tuesday at 7 >p.m. ET at the Equal Access Cafe. o get there, click here E<A >HREF= " aol://2719:3-235-Equal%20Access%20Cafe " >qual Access Cafe</A> or KEYWORD >: BHCHAT and then click on the icon that says All Chat Rooms (lower left >side) and then go to icon that says Equal Access Cafe. Also, you can create >a private chat for Sjogren's Syndrome by <A HREF= " aol://2719:2-2-Sjogrens " >Cli >cking here: Sjogrens</A>. So whenever you want you can check and see if >someone else has created a private room called Sjogren's and is in it or you >can be the one to create this room! For quicker access put this link in your >Favorite Places too! Since this is a private chat it will not be facilitated >by an AOL host. > >AOL also has a Sjogren's Syndrome Message Center so click here <A >HREF= " aol://5863:126/mB:108332 " >Sjogren's Syndrome</A> to get there and then >put this link in your Favorite Places or >Keyword: Better Health and then click on: Icon that says Message Boards and >scroll down until you see Self Help & Support Groups and then scroll down >until you see Sjogren's Syndrome and hit enter. > >Public chat logs from our Sjogren's Syndrome Chats are now available in the >Software Library in the Better Health Forum. After the logs is uploaded to >AOL, their staff takes a couple of days to review the logs and check for >viruses before listing them in the library. To get there, click here <A >HREF= " aol://4400:33335 " >Chat Transcripts M-Z</A> , and you can save this link >in your Favorite Places. Then find the SS Chat for date wanted and click the >download button. > > >c >*************************************************************************** **** >********************** >TIPS FOR PATIENTS WITH SJOGREN'S SYNDROME > >1. Humidify your bedroom. If you have forced air heat or central AC, >humidify >house. > >2. Call 1-8OO-SJOGRENS to become a member of the Foundation and receive >the >very helpful newsletter, Moisture Seekers > >3. For Raynauds Phenomenon: outdoor-clothing stores sell sock liners and > >glove liners that help retain heat. > >4. For dry, itchy skin: soak in lukewarm water at least 20 minutes. Dab >off >only droplets of water and quickly and liberally apply occlusive lotion, or > >if very severe, Vaseline. After itching is under control, soak only weekly > >and bathe " strategically " on daily basis. Rub Eucerin creme or similar > >product in soles of feet at bedtime. > >5. For vaginal dryness, use KY or similar waterbased product, nightly >for >itching, as needed for intercourse, and on tampon as needed. > >6. For sinus, nose, throat dryness: Stop all use of decongestants. >Irrigate >nose with sterile saline during colds, etc. Bend over a sink, tilt head 90 > >degrees to one side and squirt in saline until it drips from other nostril or > >runs down throat. Tilt in reverse direction and irrigate other side. If no > >saline drips out, stop. Keep saline with you on airplanes and other dry > >environments to wet the nasal membranes. Celluvisc can be snorted to relieve > >nose and throat, especially if you often wake with a sore throat, use > >Celluvisc at night. > >7. For dry eye: if you use an artificial tear more than four times a >day, use >a nonpreserved product. Use the tears before the eyes start to hurt. Learn to > >blink more often and more completely especially when reading, watching TV or > >using a computer. Side shields are helpful in the car to keep defroster or AC > >from drying out your eyes. If your eyes are sore in the morning when you wake > >up or there is dried mucus in the corners, try Celluvisc or even a heavier > >lubricant at bedtime. IT WILL BLUR YOUR VISION AT THE TIME! > >If you find yourself frustrated with using the drops so frequently or the > >combined methods above are not sufficient, talk to your optometrist about > >collagen plugs. If they bring relief and you have no excess tearing, heishe > >can insert permanent plugs or refer you for cautery of the drainage ducts. > > >Dry eyes from primary SS can be very severe and you should see your eye care > >practitioner frequently. > >8. For dry mouth: Dental examinations every three months are a must. You >must >also use a fluoride treatment prescribed by a dentist. Make sure you find a > >dentist who is very familiar with Sjogren's Syndrome. You should floss and > >brush every time you eat. If this is not always possible, at least rinse the > >mouth with water. > >Avoid sugar because tooth and gum disease are much more likely when you have > >less saliva. Still, it is better to have two cups of coffee with sugar in the > >morning and then clean your teeth than to have one cup in the morning and one > >cup in the afternoon. > >Drink water or sugar free sodas. > >Report sore on the lips or in the mouth to your dentist immediately. > > >To help stimulate salivation, you may want to suck on a sugar-free candy or > >chew sugar-free gum. > >There are saliva substitutes available in the drug store without a >prescription, but many patients prefer to wash down their food with water. > > >If your problem is more severe, discuss medications that stimulate salivation > >with your rheumatologist. > >9. For dry bronchi and sinuses, there are individual humidifiers, >frequently >used by singers, that reduce wheezing and pain. > >Developed by E. Marren, OD, FMO > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 Hi - I too have dry eyes and dry mouth and my tests show up neg. for sjorgrens. They are also symptoms of fibromyalgia. I have read that sjorgrens can be treat by the ap protocol. Maybe you need a different antibiotic? Have faith - I know it is very hard and I rely on the posting and some close friends to get me through the tough spots. Hugs, LuAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 , I'm so sorry you're having problems. I thought I had sjoren's too, with a dry mouth that was terrible, but it was a flare and went away. You're also taking alot of meds, right, and maybe they're affecting you. At any rate, are you contacting Dr. Franco and getting his valuable opinion.? You're in my thoughts. I hope you feel better soon. I know how overwhelming this RA can be. Warm regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 Hi Lisbeth--no apologies needed. I understand what you were saying and I'll all for being positive and hoping that doesn't have Sjogren's. And I hope the information I passed along on Sjogren's is helpful. Carol E from NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Hi Sharon, Your provider is not accepting email message to your address. That might be why you're not getting replies. Are you still in the group? Chris. On 06/02/2004, at 8:17 AM, sharon wrote: > still looking for people on antibiotic for sjs. please email me > sscholz@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 > Hi Sharon, > > I'm glad your email is working and you're still in the group. > > The founder of our organisation, Ethel Snooks in Georgia, had severe > Sjogrens, polymyositis and RA for 17 years before recovering on > antibiotic therapy. Her email address is emsnooks@... and I > know she would be happy to talk to you. > > There are nearly 1000 people in the group now and you will find them a > good resource. I'm also happy to help you with any aspect of the > therapy - my daughter is on antibiotic therapy for severe systemic > scleroderma and I'm one of the moderators of the rheumatic group. I'm > really glad you've started the antibiotics. > > Hope to hear back from you soon, > Chris. > > On 08/02/2004, at 2:30 PM, S Scholz wrote: > >> chris >> i am still in this group i just started ap and praying that it will >> work and >> need all the advice and support i can get >> sharon >> i have been recieving mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 OK, I hate to ask. What is Sjogrens? Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 >OK, I hate to ask. What is Sjogrens? >Elaine It's an autoimmune disease that attacks your saliva/tear making cells. You get very dry eyes and mouth (and end up having to use eye drops and artificial saliva). You get teeth problems, bad breath. And your joints start hurting. Heidi Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 I do not have any of the symptoms of it. How does one go about finding out if it is primary or secondary and to what? Please help! Thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Kim: I was diagnosed with RA in January this year, and then diagnosed with Sjogren's Syndrome in June. My Rheumy diagnosed me when I presented her with some symtoms I was experiencing: dry eyes, dry mouth, swollen glands/lymph nodes, etc. Speak to your Rheumy about diagnosis and treatments available. Take care, > I do not have any of the symptoms of it. How does one go about > finding out if it is primary or secondary and to what? Please help! > Thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2005 Report Share Posted September 24, 2005 I also have Sjogrens Syndrome and was wondering if any others had it, and how you are being treated for it? Kenajean Quote Link to comment Share on other sites More sharing options...
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