Sjorgrens syndrome

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 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

 

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

I'm not trying to persuade you that you do not have burning mouth syndrome. I've never even met you nor am I a doctor. I am just trying to suggest other possibilities for your problem. When you mentioned excruciating pain it reminded me of a condition that you should consider Googling. It is called Trigeminal neuralgia. I know nothing about this condition I have only heard about it on Facebook groups that I belong to for chronic pain sufferers.

One of the big reasons why I knew I didn't have burning mouth syndrome is because my mouth burned when I ate. When I joined a group on Facebook that was for burning mouth syndrome sufferers many of the members said that their mouths felt better while they were eating. And the reason for this is because when they were eating their mouth was producing saliva which apparently relieves some of the pain/burning.

The reason why I said a biopsy was out of the question is because it's a huge thing to have done. It is also extremely painful and I don't mean when he's doing it I mean for weeks after. When I had my tongue biopsy I had trouble eating for weeks afterwards. And I don't think a thrush diagnosis should be made by way of a biopsy. I doubt you'd find an oral surgeon or an ENT willing to do a biopsy to confirm thrush. After all why not just treat with thrush medicine and see if it helps. At least that's what I think doctors are going to think.

Regardless of what you choose to do about your condition, I do wish the best for you. And please keep me posted, I would love to know that you have found a solution to your problem. Living with chronic pain is almost like living in hell. Not that I've ever been there. LOL

Dear amkoffee,Sorry so late; I have been in a lot of pain.  I know all about trigeminal neuralgia and no anti-seizure meds help.  Also, I did have a fall on the L side under chin.  First I experienced numbness and it was not until I had an operation that a resident surgeon ripped out a stitch on my R side that I experienced 3 months of infections, pain (excruciating; like a gnawing in my gum line).  They tested me on an MRI and there is some looping that barely abuts the trigeminal nerve and that was a few years ago.  I do have facial neuropathy.  My myelin sheath could be wearing down.  I do have the burning mouth syndrome only on my lower outside lip; as if someone is holding a hot coal on it.  I am now taking what you suggested, but I really don't think I have thrush as my lip burns even from talking.  I appreciate your kindness, and I don't know how long I can take this and all of the medical problems I am having at 66.  I do know that about 90% of patient with Sjogren's are post menopausal women.  It is estrogen  that controls the salivary glands.  I am on HRT but my levels I am sure drop even more because of my age.  Blessings to you, donna

I did have an gastroscopy done over ten years ago to test for H. Pylori bacteria which I had, but no thrush.  I scrape my tongue and there is nothing there.  I am taking Clotrimazole 10mg/4/day.  I started 09/17/2018, and as of yet there is no difference. I really don't think I have thrush.  I do have post nasal drip, but if I take an antihistamine it would dry my mouth out more.  I only spit up liquids and not food.  The only time I see anything scraped off my tongue is in AM, but I know it is the lip balms I am using and there is no odour at all.  If I use Vaseline it is a very light yellow on the scraper. but if I use balms it is always white.  None of the doctors think I have thrush.  I know the my saliva used to be normal before the lip burning syndrome that is only on lower lip.  I do have changes consistent with Sjogren's, and Hashimoto's.  Blessings upon you, donna

I did not know that estrogen controls saliva. That's interesting. I had a complete hysterectomy at the age of 35 and started on estrogen patches. I was on those for years and felt as good as can be expected. At the time I didn't have any health problems. But one day on my annual visit to my Ob-Gyn the nurse practitioner told me about bioidentical hormone replacement therapy. When I started taking it I realized just how bad I was feeling because I was feeling on top of the world. My libido was back and I felt 20 again I had energy and I was upbeat and feeling great. It's something you might want to look into doing if you're not already. They are custom made for you at a compounding pharmacy. So each person's bioidentical HRT are specifically made to match your needs. So your doctor will test to see how low your estrogen, progesterone and testosterone are. Then she will create a prescription to increase what needs increasing and at what rate it needs to be increased at. It makes a hugh difference adding the between taking estrogen everyday versus taking one of these.

I am on hormone replacement and I am sixty six. My insurance wanted to take me off of hormone replacement because it can cause some problems of women my age, like increased breast cancer or heart attacks and strokes. My Gynecologist wrote a letter that I need to be on HRT because of oseoporosis. I already have ostopenia changes. Blessings, donna

Hi Maureen,

Sorry this is late but I have been in bed most of the time. I do take Pilocarpine 4-5/day. My saliva is still so thick and sticky and everything sticks to my teeth. I lost my appetite because I have to constantly floss and rinse my mouth out. I even spit up water; not food. I do not have thrush but did try clotrimazole and it did not help but make my saliva even worse. I have tried one cup of hot coffee, but it doesn't help. I tried hot decaffinated tea and that doesn't help. I am so exhausted and in so much pain and the only relief is sleeping which I don't get enough of. Thank you and blessings, donna

Donna I am so, so sorry that you are going through this. I have my 6-monthly appointment at the Dental Hospital next week in the Oral Medicine Clinic and I will ask the doctor I see there if she has any suggestions for you. She probably won't as she doesn't have anything much for me but it's worth a try. She deals specifically with people with such problems including Sjogren's and those whose salivary glands no longer function through cancer therapy. I do wish I could help you more. Please don't feel that you have to reply to this message. Just know that we care.

Very best wishes, Maureen