Some what new here

General
1

Hi everyone. My name is Tina and I am some what new here. I have a few questions that I would like to ask and I hope that they haven't been asked before. First of all, I was fighting dry mouth for over a year. A year ago, my dr thought it was thrush and put me on Diflucan, which didn't help. Then he tried an antibiotic which also didn't help. I went a week totally pain free and I thought that whatever I had was gone. I wasn't so lucky. The dry mouth came back, the burning tongue was back, so back on Diflucan I went. It still didn't do anything. This was about 4 months of treatment. Finally he sent me to the ENT who put me on Salagen 7.5 mg twice daily. Oh I was in heaven when I started taking the Salagen. It worked for about a month, and then all the pain came back. I called the ENT's office and they told me to take an extra pill in the afternoon. So far, it has done nothing. My mouth hurts so bad. I used to love eating spicy foods, but now I can't eat them. Even if it is very very mild, there is no way. Even crispy foods make my mouth hurt. The ENT said for me not to drink as much water as I was, because it is to thick. So I have been having slushies, not good for my weight problem, but the cold helps. I have an appt to see the ENT Aug 5th and he mentioned about doing the lip biopsy. Has anyone went through that and how painful is it? I just want to get rid of this dry mouth.

I also suffer from Fibro and 3 ruptured disks in my lower back. Do to that, I can not walk and have to use a wheel chair. I'm bed ridden and tired of that. I can't find a neurosurgeon to do my back surgery. They all say that I am "to fat and would die on the table". But yet I am expected to exercise by walking or using my stationary bicycle. I can't do either.

Oh another question that I have, is on oral care. I can't find a toothpaste to use that doesn't make my mouth go into horrid pain. I've even tried baking soda and peroxide. Just to much pain. Any ideas would be wonderful.

2

Hi Tina,

Welcome to the discussion boards, good to hear from you.

I have used Biotene dry mouth toothpaste, mouthwash and gel long before I had any idea that there was an autoimmune disease causing it. It is available in most drug stores, Walmart, and online.

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=buy%20biotene%20products%20online

I have never used Salagen, but there are other members who have/are and they can tell you their experiences with that.

My heart goes out to you on the ruptured discs, that must be absolute agony! I have the Spondylitis type of Psoriatic Arthritis, which targets the spine, so I know about back pain. I too have fibromyalgia, no fun, is it?

Sound like you're in a real tough spot. There is only one thing I can think of, but of course you'll have to get at least one Doctor on board. Pilates was originally exercise for bedridden patients, if you could get a Doctor to approve in home therapy of this kind, it may be a good solution. I'm not sure if you could do it with ruptured discs, but it's certainly worth discussing.

https://www.pilates.com/BBAPP/V/pilates/origins-of-pilates.html

Diflucan is an anti-fungal, used for yeast overgrowth, so perhaps this was spotted by your Doctor. It's not uncommon for us to have this problem, but it is NOT a treatment for Sjogren's.

Spicy foods are out for me too, so I understand how much you must miss them!

I hope that you can get to a better place with all of this, I'm sure the other members will have some good advice for you. Do take care.

Wishing you well,

SK

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The pIilates is a good idea. I’ve used Pilates to gain back some strength after being stuck in bed. It’s a slow process.get someone who knows what they are doing. Good luck and I hope you find relief

4

Hi Tina,
I got a prescription toothpste from the doctor mainly to strengthen the enamel with the fluoride
toothpaste. Is your mouth pain due to the dry mouth?
I think you would benefit from the help of a rheumatologist. He can give you all the tests for SS.
I would try accupuncture for all your ailments except for the disks. I am thankful that I live in a
large metropolis so we have the best doctors that are very knowledgable of FM, SS, etc.
Hope this is helpful.

5

Hi

sorry you are suffering so much

toothpaste wise I've found that both varieties of squiggle to be very soothing and actually help moisten the mouth.

http://www.squigle.com/

Like you I found salagen did a little for a very short while then failed.

Exovac is the better of the 2 salivary drugs available to you in the USA (sadly not in europe or aus).

Hope this helps.

6

I have found that my burning mouth will come and go. But for the most part I can no longer enjoy certain foods and beverages I once did. I enjoy a glass of red wine, but now it's like drinking vinegar. Have you tried sugarless gum? I chew constantly. I think Biotine makes a chewing gum.

Wishing you the very best!

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Welcome, Tina, and so very sorry you are dealing with these issues. I like to also get a tube of toothpaste at places like the Whole Foods Market called "Auromere". It is ayurvedic and really helps the gums. It has helped me before when I've had a sore gum area. I hope you can find some of these products mentioned and get some relief. There must be a way to get some healing in your mouth.

8

Like everyone else has said, I am truly sorry for all your pain and suffering, but you have found the right place to come for information and fabulous support.

I use Biotene as well; but I use Synsodine(sp?) toothpaste, but none of those actually helps with my dry mouth. I have to have a hard candy (sugarless) almost non stop, I can't chew gum because my SS and Psoriatic Arthritis (PSA) has caused TMJ. It is so sad that we talk in jargons and abbreviations but alphabet soup is the trend now...so sorry I got off track!

You will discover there are some well informed contributors in this group! I totally agree with SK that you need to see a Rheumatologist to get the treatment you are going to need. I have also had to give up anything spicy and even some 'regular' food can burn and hurt. Another common side effect with SS is rapid dental declines. In one 6 month period my dentist discovered 21 cavities, that was a real downer for sure. I, too have a disc problem and have 3 steroid injections that have nothing to help and I am not open for surgery, partly because I take Humera and that makes a terrible risk patient for any surgeries.I am also overweight which is no help at all.

I hope you feel better soon and you can find a Rheumatologist quickly. Come here for information, but also come for the absolute support that you deserve!!

9

I just found this message in my inbox or would have replied sooner. By January 2013, I was getting sores from the dry mouth and was having trouble eating anything, much less spicy or sour. I started oil pulling and within 2 days the pain was gone, within a week the sores were gone, and as long as I oil pull at least twice a day, my mouth is not sore. Dry, yes, deteriorating teeth yes, but sore no. If I slack off and just do it once a day, my mouth starts getting sore again. I use coconut oil because I prefer it to the oiliness of sesame oil.