Hi all . I received a biospy of my salivary gland and it came back showing inflammation and lymphocytes in the gland which my doctor told me this may be sjorgrens . I also have a dry mouth and dry eyes. Since thenI have been having problems with enlarge turbinate in the noise has anyone have this problem? And is anyone taking medication for sjorgrens if so what's the name of the meds and is it helping with the symptoms?
I take pilocarpine it helps with the dry mouth and eyes Im also on Entanercept which relieve lots of the other symptoms Joint& Mussel pain ect. hope you find some relief
I got a lip biopsy in April this year. My bottom lip is still numb possible nerve damage. Is your bottom lip numb?
My lip biopsy was inconclusive which was so frustrating. There is still a lump where they took the sample and that was about a year ago. I take something for my dry mouth and Restasis for my eyes. I stopped taking Restasis for about 3 months because it was so expensive. I thought I could get by with just the OTC drops but I couldn't. The dryness was affecting my vision and when I had a visit with an eye doctor who specializes in dry eye he told me that I really needed to go back to the restasis. It cost me $180 for one month supply of the multi-dose Restasis. I don't know how many months I can afford to do that but it has made a big difference.I also take fish oil with omega 3 which also helps with dry eye.
hi. i have not officially been diagnosed, but i have severe dry mouth. not so much eyes. i am assuming you meant turbinate in the nose yes? i am curious because i have been having problems being able to breathe comfortably through my nose like it needs a good cleaning but there is nothing there. when i kind of pull my top lip down i seem to breathe easier through my nose like something is blocking the air passage. i've also developed some kind of hard polyps inside in some places. ive been to an ear nose throat which was useless. he didn't even check my nose. I was so glad to read your post because i will ask my doc about this next visit this month. it is so uncomfortable with dry mouth added that i am getting so depressed. thank you for this question and i'm sorry i can't help you with yours. it kind of scares me though about the check in the office and the surgery possibility.
Thanks Brenda that info is helpful they have prescribed me the same medicine for the dry mouth I did not know it helps with the dry eye. Thanks
Hi mine is not numb at all. I hope that gets better for you. Thanks for sharing
thanks for sharing. I hope that bump from the biopsy goes away. I am also taking omega 3 . My doctor told me to take a few tablespoons of olive oil as well daily
Alice when you look in your nose if the inferior turbinate in the nose is enlarge you will see them. It has been hard to breath, sleep and etc . My septum is slightly deviatated so the enlarge turbinate is pressing on that restricting airway . Once the turbinate is small all works like it should . See the ent again . I'm scared of surgeries but I'll do it to get the relief so th nose can work properly. Thanks good luck with that . Ooh yeah check to see if you have allergies that causes the turbinates to swell
Hi Lisa,
I had a lip biopsy which showed changes consistent with Sjogren's. I too have a stuffy nose, dry eyes, but the worst is the dry mouth. My doctor prescribed Salagen (Pilocarpine) to help me salivate. It does but my saliva is thick, and sticky and it is hard to swallow. I also have a lot of joint pain, burning mouth syndrome and Hashimoto's thyroiditis. You are in my prayers for relief. Blessings, donna
Hi Donna thank you for sharing i appreciate it . I am learning so much about this autoimmune disease . Blessings to you as well and I hope things get better
Donna how close do your symptoms of burning mouth syndrome match those that are textbook symptoms? I had several medical professionals from dentists to doctors to oral surgeons, all telling me I had burning mouth syndrome. I knew I did not because my symptoms were not as was described to me by other burning mouth syndrome sufferers. It took years for me to find out what was actually going on, and all that time I could not eat anything with a strong flavor like salad dressing with vinigar, anything with pepper or even too much salt, and the list goes on.
Then one day I had to have a sore on my tongue biopsy because it was not healing. When the oral surgeon submitted my biopsy to the laboratory he requested that they also check for a fungal infection. Fortunately I did not have cancer but I had a fungal infection, essentially thrush but I had absolutely nothing visible in my mouth. He treated it with something my medical doctor suggested. It's called clotrimazole and it is a troche. And you suck on it until it's dissolved. Well this absolutely cured my thrush and I could eat again, nearly everything that I hadn't been able to eat for years. But within a couple of months the burning was back again and once again I was prescribed clotrimazole and it cured my thrush. But I kept getting reoccurrencez of thrush and since I had no visible spots that are typical with thrush my doctors and dentists were starting to disbelieve me. Out of desperation I went to an ear nose and throat doctor. He changed my life. I now take one of those every single day. The normal dose is 5 of them a day but I take one so that I don't get thrush. I take prednisone and I use a steroid inhaler and with Sjogren's it's just a problem that we all have to face but because I'm on Prednisone it makes it even more likely that I'll get it. So taking this medication prophylactically has made my life so much better. Thrush will not be visible in the mouth if you have a dry mouth. But it doesn't mean you don't have thrush.
Hi Amkoffee,
My doctor told me I did not have thrush. I did read about burning mouth syndrome and the majority of people who get it are women who are post menopausal. The hormone also affects the salivary gland. However, I have been on HRT. I also do have nerve damage in my lower lip which also causes pain. I had a fall over ten years ago and it only gets worse. I appreciate your kindness. Blessings, donna
Thank you lissa,
I appreciate your kindness. Blessings to you, donna
Hi amkoffee, I never had any sores in my mouth and my doctor looked into my mouth and told me I do not have thrush. However, what type of test is there to actually test to see if one has thrush? I do have post nasal drip. The Pilocarpine that helps me salivate increases the flow but it is still thick and sticky. When I scrape my mouth in the morning, there is a creamy substance, but I don't know if that is coming from all of the lip balms I know I am ingesting. However, I am re thinking thrush because of what you said. Please let me know what type of test can tell for sure if there is thrush as my tongue is not coated, and no sores. Blessings and thank you, donna
I am afraid to tell you that there is no test to see if it's thrush without taking a biopsy and of course that's out of the question. So the best test is to treat it and if your mouth feels better then it was thrush. Trying to get a doctor to believe you or understand this is in my experience very difficult. Therefore I was so grateful to find an ear nose and throat doctor who is willing to put me on a daily dose so that I wouldn't continue to get it over and over again. And most doctors and dentists want to prescribed Nystatin. Nystatin is disgusting and you're expected to swish it in your mouth for I don't remember how long and then swallow it. The whole thing just makes me want to gag. So when I found out about this other drug and it works so well and it even tastes good. It is simply nothing more than a medicated lozenge that you suck on until it's dissolved.
In my case I know I have thrush when my mouth is super sensitive to foods or anything I put in my mouth. I suffered with a case of thrush for literally years before anyone thought to treat me for thrush. I couldn't brush my teeth with a mint flavored toothpaste, I couldn't eat salad dressings because of the vinegar in them, I couldn't use pepper and sometimes I didn't even know why a specific food would burn my mouth. But I knew that I was unable to weed out food. But no one thought to treat me for thrush.
I'm sorry for the long post but try to find someone willing to prescribe you a course of clotrimazole. Hopefully you can and I think you will find a tremendous difference in the way your mouth feels.
BTW there is a group called Sjogren's syndrome Foundation. You can find them online. You have to pay to be a member but they are a wealth of information. And that is where I found out about the spots and sores not showing up when you have a dry mouth like we do.
Thank you very much for this information. Why is a biopsy out of the question? Also I meant to tell you that I do have all of the symptoms of burning mouth syndrome. I feel as if someone took a burning charcoal and keeps pushing it on my lower lip. I also have nerve damage in my lower lip.
The pain is excruciating if I talk, eat or do anything involving my mouth. Blessings upon you, donna
I take hydroxychloroquine (Plaquenil) for system-wide treatment, prescription eye drops such as cyclosporine (Restasis) or lifitegrast (Xiidra), cevimeline (Evoxac) or pilocarpine (Salagen) for the increase of saliva production. Drugs that suppress the immune system, such as methotrexate (Trexall), also might be prescribed. There are also a lot of OTC things I am finding helpful as well.
I don't have any turbinates due to surgery so I have to use saline solution to keep my nasal passages moist and clear, I prefer the mist and Eucalyptus by Arm & Hammer called Simply Saline Nighttime Relief. I also use eye scrubs recommended by my ophthalmologist called Eye-Scrub by Novartis to help unplug the oil glands surrounding the eye and Blink Tears Individual doses without preservatives, also using a warm, damp compresses for 10-20 minutes twice a day can help a lot with clogged oil glands if you are suffering from that. ACT brand as well as other sugarfree lozenges that promote saliva production or dry mouth relief, and Lubricity Oral Mouth Spray.
These things work well for me and the state of my illness affecting those areas. I hope this is helpful!
Thank you all the information is helpful . You gave me more than the doctors have . I have been at a aww not knowing how to deal . Thank you
Hello Donna
I just wanted to tell you that I also have a medicated lozenge that I suck on every night to prevent thrush. I live in Melbourne, Australia, and go to the Dental Hospital Oral Medicine clinic once each six months. My mouth, glands etc are checked and I am given a script for Fungilin which is subsidized through this Dental Hospital. Fungilin. 10mg, is Amphotericin. I was found to have a large growth of thrush at the base of my oesophagus during a gastroscopy done about 13 years ago and initially was told to take the Nystatin but this had sugar in it, not something Sjogren's sufferers want to be swishing around in their mouths. I also produce saliva that is thick and sticky and sticks in my throat so that I am constantly trying to clear my throat. In my case (47 years of Sjogren's) I think the glands produce a minimum of the water component and so the saliva is mostly the mucus component. I can often scrape this off the roof of my mouth at times and it tends to be a dull gold colour. I drink large amounts of dilute coffee (has to be a hot drink) to shift the stuff in my throat and otherwise just live with it. Sorry I can't be more helpful about this.
Very best wishes, Maureen