Suffering from dry mouth all the time. Any help greatly appreciated.

Hi Alex,

So sorry that you are going through this tough time. I felt hopeless when I was first diagnosed as well. But there is hope. There are some main routes you can choose to follow. Medicated treatment, all-natural including changes to your diet and life style, or a combination of both. I have chosen the all- natural route and with the help of a naturopath have found it quite helpful. My symptoms much alleviated over the course of three years. They tend to resurface when I stray from my diet for too long.

About dry mouth, I use an all natural mouth wash which you can probably find at any health store. You also will want to take extra good care of your teeth, and brush daily, and wait at least 30 minutes after eating before you brush. My dry mouth improved with changes in my diet, but I have never tried medication. I'm sure you will get some tips about using meds from some of the other members.

Best of luck! Hang in there--the situation usually improves with time.

Hi, you may know some of the things that help but here are a few things that help:

INCREASE FLUID INTAKE

MINIMIZE AIR CONDITIONING ENVIRONMENT.

USE A HUMIDIFIER AT BEDTIME.

SUCK ON SUGAR FREE CANDIES OR GUM.

AVOID MOUTHWASH THAT CONTAINS ALCOHOL OR WITCH HAZEL THAT ACTIVATE DRYNESS OR BURNING.

I JUST STARTED USING ORA CARE XYLIMELTS FOR DRY MOUTH AND THEY SEEM TO BE VERY HELPFUL SO FAR.

PEOPLE WITH DRY MOUTH CAN EASILY GET MOUTH INFECTIONS. TELL YOUR DOCTOR IF YOU HAVE WHITE PATCHED OR RED BURNING AREAS IN YOUR MOUTH.

I hope this helps.

Kristy k

Hi Alex,

I am new to all this too but have found the Biotène moisturizing mouthwash to be very soothing, and of course always having water/a drink to sip. I suffer from another rare chronic illness that can be rather embarassing (interstitial cystitis) for many reasons and have found that people are generally kind and helpful and will not judge you. I know it's difficult when you are so aware of discomfort in one or more particular areas of the body but your perception is not the same as those who are with you. Sometimes it helps to remove the awkwardness if you let your guard down a little with others. Hope you feel better soon. 

Hi Alexg are you in the UK? If so I suggest you ring the BSSA Tel No: 0121 478 0222 and join. I run a FB group on behalf of the BSSA called BRITISH SJOGRENS/SLE/APS/JHS Dr. E. Price is their President. Speak to Heather at the BSSA office and tell her Pam Newman suggested it. She will tell you they don't do FB as the medical committee do not wish to have one. However Dr. Price asked me to run this FB group which I have for over a year and you will get as much help as we can give you. Regarding your oral dryness there are numerous sprays available also gels and mouthwashes. If you come to the conference which this year will be in Swindon there will be a variety of samples for you to try. I always take water with me everywhere I go. Try sucking no sugar sweets or gum if you don't have pain when chewing. If you do you may have TMJ disfunction which is comm in SS. I suggest getting an NHS prepaid annual subscription as you will find it cheaper with the drugs you need. I assume your taking hydroxychloroquine as well as pilocarpine. Then you can get the sprays and gels plus eye drops and Duraphat 5000 toothpaste on prescription too. Do tell you dentist you have SS and you need very regular dental and eye check ups to ensure that both your mouth and eyes are looked after. You can also ask for a mouthwash from your GP hence my suggestion of a prepaid prescription. Good luck and if you wish your most welcome to come into my FB group. 

Hi Alexg,

once you get used to treating your dry mouth it will all seem very routine and not such a hassel. Remember bad breath comes from food trapped in your teeth. As often as possible use floss or a rubber tipped pick to clean food trapped in between and around your teeth. Don't forget the molars inside against your cheek. You'll be surprised how much food gets trapped there. Also, remember to gently brush your tounge. Consider yourself lucky to have been diagnosed early!

Good luck and feel better,

Sally 

 

Alexg, I think you are looking for hope when you are experiencing difficult symptoms and feeling isolated. I was also told the same about being so young. I wanted to punch my doctor. She made everything worse with her words. She made me feel like I had no hope. I fired her. There is something that triggers sjogrens and it is possible to find ways to make it receed in many ways. Diet, sleep and exercise are key. It is also believed that accupuncture in the ears and face are helpful to bring alive again nerves that control moisture. The accupuncturist will ask you to suck on sugarless candies to stimulate your salivary glands. Please ask around. Warren Morganstein from Baltimore MD will advise any accupuncturist on treatment if you need help. Stay a million miles away from carbs, sugar, and caffine. Get iodine and use salt in moderation. Write any time you need help. Take care. 

As many of you mention sugar-free sweets and gum - does anyone have any good brands without too much aspartame, sorbitol, mannitol etc... in them? These sweetners are very bad for health and I find that sucking on sugar-free sweets are really upsetting my stomach and undoing all my hard work to stay off gluten and dairy.

There is a brand that is homemade by a woman whose mother had a similar issue. The candies are square and in flavors like strawberry. Search the internet and I will try as well. 

I am a 53year old mother. I was diagnosed when I was 24 and had 4 children to take care of. I understand where you are. The drying of the mouth, the nose till you can't breathe. And the dry itchy eyes and other places that should be moist nat.

I use hard candy or mint gum for dry mouth. I take no meds for anything so far.

 For other things I have found other methods.

 meds are not always good for these most of these problems. I find homeopathic meds help in most cases and eating the right foods and drink more water than normal keeping hydrated helps a lot. 

When it comes to that someone you want to be close to use more mouthwash and the gum. Lol it really works.

I was diagnosed at 28 and am now 60. My only symptoms have been extreme dry eyes and mouth, which have both quietly increased over the years, requiring more symptomatic treatment. I do not take any medicatios at all. I tried Pilocarpine last year but did not find it made any difference. A dry mouth does not automatically mean bad breath, but is very distressing especially in close situations. I ALWAYS suck on sugar-free mints (Eclipse), and have them secreted in my handbag, pockets, bedside table, car etc. They are the very best "treatment" i have ever found and I never have any interaction without 1 in my mouth (sometimes just sitting in a cheek) and another one at the ready. I find this far less obvious than constantly sipping on water. Although some mouth washes may be effective, their benefits are  short-lived and not helpful when out and about, so not overly useful. In time you will assimilate Sjogrens into your life so that your dry mouth and eyes just feel "normal". I have found the best approach through 3 children, overseas and national moves, work, very active volunteer life, public speaking, grandchildren etc is to just accept it as my normal. I have not shared my diagnosis widely as I prefer to be viewed as well and not constantly discuss my problems. For me, this has assisted with remaining positive and feeling as well as possible, despite the inevitable miserable moments.

PS For those who claim that even sugar-free mints may be bad for dental health, Sjogrens is an open invitation for poor dental health so you need to have amazing dental support anyway and pay super-close attention to your teeth. All that extra care will help your mouth, and in the face of a chronic illness sometimes there are trade-offs.

Best wishes to you.