Am I going to loose my teeth? If it will happen how long will it take for my teeth to get loose? I had the symptoms of sjogrens since january 2014 but I was diagnosed until May 2014. My front teeth are so sensitive when I drink water or any liquid. Can you eat regular food when they replace your teeth with the plastic ones? I am only 27 and I am so frustrated with all the comments pn other sites about the disease. Also does plaquenil and methotrexate hurt your organs if you take them for lfetime??? Thank you.
I am so sorry you are so frightened. I had symptoms since 1999 and wasn't diagnosed until 2011. No doctor put all the symptoms together. Anyway, my teeth have suffered, too. I was talked into oral surgery by my dentist and I really feel that was a mistake for me. Maybe it wouldn't be for someone else, but because of the inflammation inherent with the Sjogren's, I had major swelling that even infiltrated my vocal chords, and I couldn't sing for SIX MONTHS. Could not control how my voice worked! I had much worse swelling and pain than someone might who did not have Sjogren's. I honestly would not do it again! The dentists know teeth and gums, BUT they do NOT know how someone can be affected who has Sjogren's. I have found overall, that what is good for MOST people, is not only NOT good for Sjogren's patients, it is very often VERY HARMFUL. Just BE CAREFUL. Even most doctors do not understand what Sjogren's patients have to deal with every day. I wish you the best. MY best advice is to BRUSH often, but please use a SOFT bristle brush, because even they can sometimes scratch and hurt my gums.
Thank you 
Hi Perla,
Welcome to the group! It's good to hear from you!
I don't think there's any guarantee that you will lose your teeth, there are members here who still have all of their own teeth. Though a dry mouth toothpaste is good for us, I also have the toothpaste for sensitive teeth that I use at times when my teeth are bothering me.
I would suggest you find the very best DDS you can find, even if it's an oral surgeon. Someone versed in Sjogren's Syndrome to care for you.
I was surprised to learn from my Rheumatologist that of all of the meds I take/have taken, the NSAIDS are the ones most likely to cause a problem. This certainly includes the over the counter anti inflammatory drugs, so please make sure you do not exceed the recommended daily allowance.
I am not a medical professional or Doctor, but yours will keep a close eye on you, run blood tests from time to time to make sure you are safe.
I'm glad you found us and joined the group and posted this for us!
Wishing you well,
SK
Perla...you seem so overwhelmed. Part of the reason i stopped going to some of the other sites was for that very reason.
No one can say what route SS will take for you and no one has exactly the same problems though some are definitely more prevalent. If it helps, I can share my experiences and I am sure others will chime in as well. Rest assured you are in a place with kind, caring people though.
For me, I don't get dry mouth so much as the dryness in the throat so I have to be careful swallowing during a flair, etc.I get serious sensitivity to cold and hot too, but it comes and goes (similar to a flair up). However at my check-up last month I have no cavities and no signs of decay. I haven't had one in over 10 years, thankfully. It would be very wise though to take very good care of your dental health as a whole though since the dry mouth is largely what contributes to the issues. BTW... I have had signs of SS for well over the 10 year mark but was only finally diagnosed this past March.
As for the meds...I only take Plaquenil. It doesn't do the kind of damage that steroids will do in the long term. You do have to have your eyes checked regularly though. If an organ is going to be affected, that's it. And then, the bigger problem is if you don't address it right away. Staying on top of your doc appointments is a must, as tiring as it may be. I know the docs can make you feel rushed but ask questions.I will even ask different docs the same question because one may add a tidbit the other didn't and also because one may explain a particular thing better than others.
I am sorry to hear that you are on this journey but hang in there and take it one day at a time. As a very wise lady here just reminded me, worrying something may happen doesn't change things at all. It only robs you of today. I think you will find this a place that you feel supported and comforted. And everyone here "gets it" as others may not.
Take care.
Thank you so much it has really help! It is true worrying will not change things in life.
It is so easy to let worry overcome you and it will control your life if you do that. Did you start some kind of med for your symptoms? Plaquenil will take up to 6 months to really kick in. Everyone’s disease progression is different. Start a diary and learn to recognize what triggers your symptoms. It will help you feel better physically and emotionally because you will have taken charge of your medical needs.
My dentist recommended a sonic toothbrush and I use that with Biotene mouthwash. Practice frequent oral hygiene. Keep your mouth moisturizer with either Pilocarpine, or an oral spray. Whatever works for you.
Sending support your way. Knowledge is power. Read all you can about Sjogren’s so that you can be an active partner in your health care.
It sounds as though you have found a good Rheumatologist, and believe me, he will be your best friend. Finding 'your Doctor' is sometimes the most difficult mountain to climb. I keep a running list of things I want to discuss with him. He also asks us to fill in a questionnaire at each visit and I will add any information that needs to be known and added to my records.
I am fortunate to have a wonderful GP (Internist), Rheumatologist and Chiropractor, and just like Enjoy Life suggests, I often ask them all the same questions, and I take all of my latest test/lab results, MRIs to all of them for advice and comments.
I also learn so much here, by researching for others, finding topics for discussions and especially from our members, this is an exceptional group of people!
Welcome, Perla! So sorry you have SS at such a young age! I only know about Methotrexate - it has to be watched carefully or it will damage the kidneys so it's definitely not a long-term drug. But your doctor should be able to monitor you on that. He/she should know when it's time to take you off if they are watching your kidney blood work.
Hi Perla! I’ve had symptoms for several years as well and haven’t had any new cavities since I was a teenager. I’m in my mid 40’s now and was just diagnosed in May this year. Like what the others suggested, keep good oral hygiene. I use an electric toothbrush which is a great tool. Make sure to floss regularly too. I don’t know why but it still surprises me how much food will stick in between teeth up by the gums even after brushing really well. I noticed how much food would stick to my teeth after eating and it seemed to get worse every year. Not knowing any better I thought it was one more thing from just getting older. Who knew, it was Sjogren’s all along. I got in the habit of flossing or using those G U M soft picks every time if I couldn’t brush my teeth right away. I really thinks that has been a huge benefit. Because this is still so new for me too I can’t share anything with the meds. I sure hope you’re able to find the right balance for you and you find some relief soon.
There is also a toothbrush which removes plaque in between and under the gums very well. It's made by Dr. Tung's (a company in Hawaii). It's called the IONIC Toothbrush. No electricity is needed. You just keep a wet finger on the metal bar, and when the brush touches the teeth, the charge changes and the plaque is easily repelled from the teeth. There is a tiny battery inside that lasts anywhere from 12 to 18 months, and then you buy another one. They usually cost about $26, I think. I can only find them on-line -- in several places.
First I've ever heard of this, thanks DLT!
Good info, good to know there is atoothbrush that can clean well the gums too.
Hi Perla, I have problems with my teeth, partly from SJS but some tooth damage prior to SJS. One of the things my Rheumy has suggested that I do to help with dryness and keeping my teeth clean is to chew sugarless gum. It helps keep stuff off my teeth and from between my teeth. I have pretty severe Trigeminal Neurolgia (type 2) and sometimes I can’t even brush and I think the sugarless gum really helps me.
So sorry to hear about the TN, my heart goes out to you, TL.
There are no good illnesses to have but this is brutal!
Thank you for your kind words, SK, but I have been blessed to have gotten a Peripherial Nerve Stimulator implanted to handle the worst of the pain. It has given me incredible pain relief. I have TN in 2 other spots but the pain is not as intense in those places.
SK said:
So sorry to hear about the TN, my heart goes out to you, TL.
There are no good illnesses to have but this is brutal!
Hi Perla! I take plaquenil and methotrexate. The important thing is to keep your doc appointments so that your liver can be checked regularly. Also write down any new symptoms you notice. You never know when something that seems so minor to you is a red flag to your doc.
BeautifulSC: for how long have you taken plaquenil and methotrexate? I started this pass june with the treatment and I dont see any change with the swelling of my hands and ankles. Specially in the mornings and nights its worse the swelling. The rheumy did a lupus test, but she said I dont have it. Is it common if you have primary sjogrens to have swelling in the hands and ankles?
TL, this is good news, I'm glad to hear these stimulators are working. A friend of mine on the psoriatic arthritis group has a spinal stimulator implant and said it has really helped him with the worst of his pain as well.
It is miraculous for me! Thanks for caring and for doing such a great job moderating this group. It must be a full time job!