Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Nina and others, I have a friend who has AIH and Sjogren's, can you tell me what some of the good medications are out there to treat this? Thanks alot, Joan in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 I have Sjogren's. If I can help anyone, I would be glad to. Nina in TX PBC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Hi I also have Sjogren's, along with lupus, AIH and PSC. I take a pill called Salagen for the Sjogren's. It helps somewhat. I mostly have the dry mouth problem, so I always have a bottle of water with me wherever I go. Dianne A. (AIH dx 1985, PSC dx 1996, Lupus & Sjogren's dx 1997) in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Nina, How difficult is Sjogren's to diagnose? I've had minor symptoms for years and for the past couple of years dry mouth especially has bothered me. Sometimes it's like my tongue and the roof of my mouth are made from a sandpaper Velcro and I can hardly get them apart, especially when I wake up. I saw a Rhematologist about it and he ordered some tests for Lupus, according to the reports, and they were negative (no surprise.) I'm wondering if I should bother to ask my new doctor about it. I'm sure he'll pursue the matter until he finds out one way or the other, but I thought that Sjogren's is almost always harmless but uncomfortable. Apparently this was a misconception. It really doesn't bother me enough to be a big deal but who knows what's down the line? Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Geri Spang wrote: > Nina, > How difficult is Sjogren's to diagnose? My rheumatologist (the first time she examined me) asked me how long I had worn dentures. I told her 11 years. I was 37 when I finally had to give up and get my teeth pulled. I had spent thousands and thousands of dollars on them and they just continued to disintegrate. That is when she told me I had Sjogren's. If you don't have enough saliva, the bacteria will eat away at your teeth 24/7. At the time I was having so much trouble with my teeth, the dentist never mentioned Sjogren's. He probably knew nothing about it back then. Now, a dentist knowledgeable in Sjogren's can do wonders in saving your teeth. > I've had minor symptoms for years > and for the past couple of years dry mouth especially has bothered me. > Sometimes it's like my tongue and the roof of my mouth are made from a > sandpaper Velcro and I can hardly get them apart, especially when I wake > up. This is typical of Sjogren's. I have spent the last 11 years constantly drinking something. Even my co-workers would make fun of me because I was always taking a drink. It also makes your skin dry and the same co-workers teased me about constantly putting lotion on my hands. > I saw a Rhematologist about it and he ordered some tests for Lupus, > according to the reports, and they were negative (no surprise.) I'm > wondering if I should bother to ask my new doctor about it. I'm sure he'll > pursue the matter until he finds out one way or the other, but I thought > that Sjogren's is almost always harmless but uncomfortable. Apparently > this was a misconception. I was also tested for Lupus and it was negative. If you mentioned the dry mouth to your rheumatologist, then he/she was remiss in not picking up on what was going on. They are the ones that treat it, for heaven's sake. My rheumatologist asked me about my eyes and I told her they were dry and the right one constantly felt like I had sand in it. She sent me to an opthamologist who did the necessary testing (totally painless) and he diagnosed dry eye syndrome. I use artificial tears 8 times a day and I can't believe the difference in the way my eyes feel. He did find four lesions on my right eye. They were not on my cornea, but that happens so I was lucky. Then, I was off to an oral surgeon who did a salivary gland biopsy (who by the way was telling me through the whole process that he didn't think I had Sjogren's). The lab test came back positive for Sjogren's. The Sjogren's also keeps my lungs very dry, so I use a nebulizer to add moisture. Of course your vagina may also be dry. You can use artificial lubricants for that. Sjogren's can also dry your internal organs. But I have never heard it is life threatening. > It really doesn't bother me enough to be a big > deal but who knows what's down the line? Exactly!! If it is Sjogren's it's better to be pro-active so you can prevent damage to your teeth and your eyes. Good luck and let me know what your new doc says about it. I have some URL's on Sjogren's that I'll find and send to you privately. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Nina, I know that Sjogrens can cause dental problems. My friend who has Lupus and Sjogrens told me that she's had to have thousands of dollars worth of work done on her mouth because of the damage done by Sjogrren's. I've had a difficult time identifying a good dentist in LV. Everyone here seems to want to sell cosmetic dentistry and I need someone who is " serious. " I finally found someone and wouldn't you know - he relocated to Reno. However, my new doctor has given me the name of his personal dentist so I'll see him soon. Hope no damage has been done yet. I've always had very strong and healthy teeth and gums but I realize that all of that might have changed during the past couple of years. I have to remember to bring it up to the new dentist as soon as I can get in to see him, later this month. It beats me why the Rheumatologist wasn't able to figure out whether I have Sjogrens since I have so many symptoms and have for years. Any info you have on the subject will be very much appreciated! Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Geri, One of the main concerns about Sjogrens and your teeth is due to the fact that your mouth is so dry from the lack of saliva. I would strongly recommend that anyone with a dry mouth use a daily fluoride rinse. That will help to avoid cavities because of the dry mouth. I see a lot of older patients with dry mouths, and tons of cavities. That's because they don't have the normal " washing " of the teeth that saliva does. It doesn't matter what fl rinse, generic is fine. Although alot of my patients prefer ACT since it tastes good. Use it at least once a day, after you have brushed your teeth, preferrably before bed, and do not rinse afterwards. If you seem cavity prone, do it twice a day. Good luck with your new dentist, I wish I knew someone out there to refer you to... Actually, my dear friend lives in Reno, she's a hygienist too, maybe she'll know of one, I'll check.... Love ya, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2000 Report Share Posted December 17, 2000 lol now I'm getting hypochondriac! or is it hypERchondriac. I've just decided I have Sjorgern's Syndrome. I've never been able to swallow dry food without liquid. My parents thot I was wierd. And as the hep progressed these past few years, I've had eye problems as well, increased joint pain, etc. How much is from the hep and how much is just me or what who knows. Is this something a hepper on treatment should look out for? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2000 Report Share Posted December 17, 2000 lol now I'm getting hypochondriac! or is it hypERchondriac. I've just decided I have Sjorgern's Syndrome. I've never been able to swallow dry food without liquid. My parents thot I was wierd. And as the hep progressed these past few years, I've had eye problems as well, increased joint pain, etc. How much is from the hep and how much is just me or what who knows. Is this something a hepper on treatment should look out for? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Oh gosh, my teeth have been falling out and some crumbling. How do I find out if this is from Sjogrens? Shireen >From: " JJCathcart " <JJCATHCART@...> >Reply- ><PBC_Digest-owner >,< > >Subject: [ ] Sjogren's Syndrome >Date: Wed, 25 Sep 2002 10:56:31 -0400 > > > > http://arthritis.about.com/cs/sjogrens/index.htm >Dryness Disease Gets Attention >Sjogren's syndrome is called the dryness disease. Its hallmark symptoms of >dry mouth and eyes at first are simply annoying - until they make patients' >teeth fall out or damage eyesight, from Intelihealth. > >Evoxac >Evoxac, approved by the FDA in January 2000, is used to treat dry mouth in >people with Sjogren's Syndrome, from FDA. > >IFNalpha Improves Saliva Production In Sjogren's Syndrome >Results from a phase III clinical trial indicated improvement in saliva >production with the use of oral interferon (IFNalpha), from P/S/L Group. > >Natural Interferon Alpha Boosts Saliva Production >Results of a double-blind, placebo-controlled study reveal an improvement >in saliva production in patients given IFN-a, natural interferon alpha, >from Doctor's Guide. > >Questions and Answers about Sjogren's Syndrome >A good overall resource on Sjogren's Syndrome, from NIAMS. > >Recognizing Sjogren's >Sjogren's syndrome is often misdiagnosed and it's a great mimicker of other >diseases. It can often appear to be lupus, fibromyalgia, chronic fatigue >syndrome, multiple sclerosis or Alzheimer's disease, from ABC/Good Morning >America. > >Salagen Provides Variety Of Benefits To Sjogren's Syndrome Patients >Benefits of Salagen use was noted at the VII International Symposium on >Sjogren's Syndrome in Venice, Italy, from P/S/L Group. > >Salagen Safe For Sjogren's Syndrome >Studies presented at the ACR meeting indicated that Salagen tablets are >safe and effective against dry mouth associated with Sjogren's syndrome, >from P/S/L Group. > >1 2 Next > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Dear Cari, Sjogren's was my first diagnosis leading to my AIH diagnosis. My rhuemy had me do the lip biopsy because it was the only sure determination. It wasn't bad but I was one of the lucky few who has a permanently numb spot on my lower lip. I can't whistle anymore but I was one of those beautiful sounding whistler anyway! I just hum a lot... Did you get put on plaquenil or, if I remember, you already are? Short term memory around here is lacking desperately! I always drink when I eat other wise I end up choking on something because of the dryness. Dry mouth can cause increased cavities so that's why they suggest the saliva supp. I tried Biotene toothpaste which helped my mouth and have tried the gum but it just stuck to my many crowns so now I just chew sugarless gum - it helps with dry mouth and the bad breath that accompanies it. Sjogren's can affect any moisture producing gland in your body, so you may find your self more suseptible to yeast infection, too. I can also affect internal organs, much as lupus, connective tissues mostly. And it can affect the liver which is one reason they stopped looking with me because the plaquenil helped my liver counts too. I've been lucky and haven't had the major problems some people do. I hope the same for you! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Cari and Amy, I received from the docs years ago this over the counter ointment for the eyes. It is called lacrilube. You just hold down the lower 'lid' and sqeeze a narrow bead of it across. Everything is a bit blurry for about 5 minutes or so afterwards, and if you have mascara on it will run that all over your face. But it works wonders. I put it in at night just before bed. Just make sure you floor is clear before you put it in, or you will be tripping! It was given to me by my opthmalogist, and I love it. Carole K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Thanks Amy and Carole, I am so happy that I have found such amazing people to help me through all my stuff. I think you all have saved my life. The doctor didn't seem to think the lip biopsy was really important she was very convinced of the diagnosis, thankfully. I am taking the Plaquenil and I am looking forward to it's benefits. It is really hard on my ulcer so I haven't been able to take is regularily...even with a full stomach. Still waiting for my jerk of a gastro doc to call me with the biopsy results. Been calling since Monday and even spoke with the Kaiser Administrator about it. Can't wait until my appointment on Monday with him. I am sure he is going to be so nice..not. I do have some good news. Since being on the thyroid meds I already lost 11 pounds even though the other docs said there wasn't anything wrong with me. Bad news, I haven't started the prednisone yet. At least I am be happy for a few more days about the weight loss. Thanks again to all. Cari > Dear Cari, > Sjogren's was my first diagnosis leading to my AIH diagnosis. My rhuemy > had me do the lip biopsy because it was the only sure determination. It > wasn't bad but I was one of the lucky few who has a permanently numb spot on > my lower lip. I can't whistle anymore but I was one of those beautiful > sounding whistler anyway! I just hum a lot... > Did you get put on plaquenil or, if I remember, you already are? Short > term memory around here is lacking desperately! I always drink when I eat > other wise I end up choking on something because of the dryness. Dry mouth > can cause increased cavities so that's why they suggest the saliva supp. I > tried Biotene toothpaste which helped my mouth and have tried the gum but it > just stuck to my many crowns so now I just chew sugarless gum - it helps with > dry mouth and the bad breath that accompanies it. > Sjogren's can affect any moisture producing gland in your body, so you > may find your self more suseptible to yeast infection, too. I can also > affect internal organs, much as lupus, connective tissues mostly. And it can > affect the liver which is one reason they stopped looking with me because the > plaquenil helped my liver counts too. > I've been lucky and haven't had the major problems some people do. I > hope the same for you! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Dear Cari, You may need to ask for something to help the meds go down. Many folks on here are on different ones to prevent stomach problems caused by the meds. I'm on Aciphex but I know there are several others. They can help a lot. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Amy, Thanks for the advice. I will talk to my doctor about another medicine for my stomach. I thought the Zantac would help but it doesn't seem to help with the meds, but I can eat more kinds of food then I used to be able to. Cari > Dear Cari, > You may need to ask for something to help the meds go down. Many folks > on here are on different ones to prevent stomach problems caused by the meds. > I'm on Aciphex but I know there are several others. They can help a lot. > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 if you go through this data base you can read about people with Sjogren's Syndrome in combination with other auto-immunes. look at the end of the list https://ldndatabase.dabbledb.com/page/other/tbdgPxzK Quote Link to comment Share on other sites More sharing options...
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