Very dry mouth and eyes - Sjogren's?

Parent Cafe
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<p>I’m a regular poster, but I have created a new account to discuss this possible health issue.</p>

<p>I’ve been having problems with my eyes for about 6 months - about 5 or 6 episodes variously diagnosed as corneal abrasions, viral infections (by my optometrist) and, in August, as blepharitis (by my mother’s opthalmologist when I was visiting). I saw a retinal specialist a few months ago, because I am very nearsighted and therefore at risk for some problems. He said that my retinas were perfectly healthy and that my corneas looked perfect to him, too. </p>

<p>I’ve been having a very dry mouth recently. The first episode was at the beginning of June, when I woke up with my mouth as dry as the desert. I did not have any more problems for several months until recently. Lately, my mouth has been so dry that I wake up very early in the morning to drink water, then go back to sleep for an hour, wake up again, and so on. This has been rapidly escalating to the point that my mouth is now incredibly dry when I wake up (early), and is feeling dry all day, despite my constant drinking. Example: I was in a meeting the other day, and drank 60 oz of water in 3 hours (they had 20-oz bottles there, and I drank 3). This was after drinking 20 oz of liquid for breakfast, and I had more water for lunch right after. It is now distracting me all day. Drinking water does not really help, my mouth just dries out again right away. It is even becoming hard to eat dry things like bread. My eyes feel more dry now, too.</p>

<p>I happened to see something about Sjogren’s on this forum, and I suspect that I may have it. I have a very strong family history of autoimmune disorders, some very serious, although not this one. I am in my late 50’s and have had no health problems at all so far. </p>

<p>I made an appointment to see my doctor, and the appointment was 2 weeks ago. She looked at my mouth, and said that it looked moist, although it felt dry at that moment. She ordered various tests for Sjogren’s, as well as a glucose level. She wanted to rule out diabetes because of the thirst. I had a fasting glucose at my annual physical in June, and it was fine then, so I don’t think I have it.</p>

<p>I have been busy and travelling, so although I did not hear anything about my results, I did not call in until a couple of days ago. It appears that I forgot to have the blood drawn that day, so I will be going in again tomorrow. I don’t know how long it will take to get the results.</p>

<p>I am wondering what those of you with SS think - does it sound like I have it? I am wondering whether I should get on Restases right away for the dry eyes (my optometrist would prescribe it for me). I don’t yet have an opthalmologist here. And should I ask my internist to prescribe something for the dry mouth if my tests are positive? It will take a while to get in to see a rheumatologist, and things seem to be progressing rapidly.</p>

<p>Or is there something else this could be?</p>

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<p>When I thought I had sjonren’s, the opthalmologist said it was just severe dry eyes. The only thing that works for me are steriod drops (which may have long term side effects). The opthalmologist prescribed Restasis - no positive effects at all; I am convinced that Restasos a hoax and that it’s only cloudy saline solution in those expensive little vials! The opthalmologist also told me to take fish oil capsules and after I got over my initial gross outedness over it, after taking them for months, all I had to show for it was shiny hair.</p>

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<p>As someone with SS, it sounds like it could be it, but I’d want to wait to see what your test results are before you do anything. I’m not on any prescriptions yet since my dry eyes are not severe, so I can deal with it using OTC drops. According to eye dr, Restasis would be what he’d prescribe if I had to use OTC drops more frequently.<br>
You also have to remember that a dry mouth doesn’t mean you’re thirsty so drinking lots of water won’t help. Small sips of water to hydrate your mouth is more helpful than drinking large volumes of water. There are also special toothpastes, mouthwashes, gels, etc. made by Biotene that you can use to help with dry mouth symptoms. Unfortunately for me, I tend to have a rebound effect from them whereby my mouth feels even drier after it wears off, so I don’t tend to use them. You can talk to your dr. or dentist for other suggestions.</p>

<p>Good luck. Don’t jump to conclusions before you get the test results. I’ve just found it to be annoying & at times uncomfortable, but it doesn’t impact my day to day activities.</p>

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<p>I wanted to add that I’m still not convinced that I don’t have Sjogren’s…I have other autoimmune issues and a strong family history of autoimmunie issues. But I never pressed for a diagnosis because all I really wanted was to fix the dry eye problem.</p>

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<p>I wrote about Sjogren’s a while back. Sounds like it could be SS, but, yeah, don’t jump to conclusions. The effects for me have been pretty benign, but I did go on meds in the past year to help with the dry mouth as I started having dental issues and wondered whether they could be related to the dry mouth. I use OTC drops for my eyes very rarely.</p>

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<p>My ophthalmologist recommended OCuSoft Plus eyelid cleanser pads for blepharitis and they have really helped with my severe dry eyes. He also recommended Soothe XP eyedrops - the lubricant in them seems to help me more than other OTC drops. At night I often use a gel. For the dry mouth problem, someone suggested chewing sugarless gum and that also helped me a lot. Good luck!</p>

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<p>My mom was diagnosed back in 1962 with SS and this diagnosis took years since it was so unheard of then, even in the medical community. At that time, she was told she was one of 9 known cases.</p>

<p>Whether or not you have SS, please be aware that dry eyes and dry mouth can cause many other problems. She used gen-teal artificial tears most recently before she passed away, finding they were the most soothing (I remember when her artificial tears were prescription only). She used them religiously every two hours while she was awake and as needed while sleeping. She had absolutely no tears, saliva, or mucus whatsoever though.</p>

<p>She and her sister both had auto-immune diseases including rheumetoid arthritis and MS. </p>

<p>But the hardest thing for her was that her lack of saliva caused her teeth to decay rapidly. Before SS, she had no cavities at all (and she was born in 1930 before the age of regular dental care) By age 28, she had to have all of her teeth pulled due to decay. Her dentist and periodontist were totally mystified. She only learned later that she had SS and the lack of adequate saliva was what caused this. </p>

<p>I tell this not to scare, but to caution of some of the resulting issues so you can address them.</p>

<p>A local friend of hers on Long Island started a support group which now has newsletters and I’m sure a website. Google it and see what you come up with. The newsletter is very helpful. We were told that SS typically skips a generation, so we are vigilant with our kids!</p>

<p>Good luck!</p>

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<p>Youdon’tsay: What are you taking for your dry mouth? My rheumatologist prescribed Evoxac, and I’m not dazzled.</p>

<p>Missypie: I agree with you about the Restasis. My eye doc prescribed it several years ago and I used it for about six months and then stopped. When I saw him a year or so later, he was soooooo disappointed that I had stopped. He alleges that he keeps your eyes from deteriorating over time, so using it now will supposedly help in the future. </p>

<p>Sure. Whatever. But I do use it most days now.</p>

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<p>^^^ That’s what I take. I notice its effects most when I take it at bedtime and wake up hours later in a puddle of drool.</p>

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<p>Humph. I wish.</p>

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<p>Thank you for all the responses. Have those of you with SS been diagnosed through blood tests? </p>

<p>missypie, you’ve just reminded me that the times when I’ve had the worst dry mouth symptoms correspond to the times when I stopped taking fish oil. I haven’t taken any for days, and I just took some now.</p>

<p>It does not sound like there are effective prescriptions for these symptoms. camtig, I was using Ocusoft cleaning pads for the blepharitis. I guess I will try those again. I’ve also been using Theratears drops, and they seem to do nothing. I’ll try the Sooth XP. I wear gas-permeable contact lenses, so I am probably more sensitive to dry eyes than most people are.</p>

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<p>I think it was a blood test.</p>

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<p>Diagnosed through blood test, symptoms & ruling out other autoimmune disorders.</p>

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<p>I was reading Sjogren’s forums last night and I came across a solution for night-time dry mouth. As I mentioned above, lately I’ve been waking up very early because my mouth has been so dry. Someone suggested putting a small amount of Aquaphor on the tongue at bedtime. I tried this last night, and it worked beautifully. I slept through and felt much more comfortable.</p>

<p>I also noticed something. I learned where the salivary glands were and, while looking for them, noticed that if I pressed on the ones below the jaw (near the neck), saliva flowed freely into my mouth. Does this imply that the ducts are clogged, or does the action of pressing on the glands stimulate production? Is this true of other SS people?</p>

<p>I had blood drawn this morning - I’m pretty sure I forgot to have it drawn a couple of weeks ago when I was in - so I should know something pretty soon.</p>

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<p>My blood test results are in, and everything is negative. I’m surprised, as I was sure that I had it. I suppose it is still a possibility? My internist told me to get to an opthalmologist soon about the dry eyes.</p>

<p>Fish oil has come up in this thread and, as I mentioned, I started taking it again a week ago. After only a couple of days, my dry mouth symptoms nearly disappeared. I went from having problems sleeping, and feeling uncomfortable eating dry foods like bread, and even talking, to feeling almost normal. I take a medical-grade fish oil that I order online.</p>

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<p>You can have a negative blood test and still have SS…the gold standard test is a salivary gland biopsy.</p>

<p>However, there is no real treatment for SS (unless very severe, where I think some have had success with IVIG)…you are just treating the symptoms. So I wouldn’t be too obsessed with finding out whether you have it or not, as long as you can manage whatever symptoms you have with the appropriate medications (OTC or prescription) if needed.</p>

<p>Since you said you drink a lot, have you also been evaluated for diabetes insipidus (this is not sugar diabetes…it is a deficiency in ADH which causes frequent urination and then dry mouth/thirst because you have lost fluid which needs replacing).</p>

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<p>I’d never heard of diabetes insipidus before your post, ReadyToRoll. My doctor did test for diabetes, and the result was normal, as it always has been in the past. I just read about d. insipidus on mayohealth, and I don’t think I have it. I don’t have to wake up in the night to urinate, and I don’t have many of the symptoms on the list, except for dry mouth. (I certainly do not have “weight loss” - more’s the pity!)</p>

<p>Thank you for the suggestion. It is amazing how much you can learn on CC.</p>

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<p>DM&E ^^^</p>

<p>It is amazing how much you can learn here!</p>

<p>Thank you for this thread.</p>

<p>I have severe dry eyes which effects my vision tremendeously causing many fluctuations in vision. I had not heard of Sjogren before.</p>

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<p>Thank you for saying that about Restasis, missypie. The other day my dr. told me to go to an opthalmologist and said he will probably prescribe Restasis, but I’m leery of it (one component is a chemotherapy drug).</p>

<p>I am a heavy eye-drops user, I use … whatever I have a coupon for. I’m going to try the Soothe XP and the cleansing pads, thanks for that tip.</p>

<p>I tend to be a cyberchondriac, so I think I better not look up that diabetes thing! :slight_smile: I am trying to fight the ‘piggy eyes’ (Frank McCourt) symptomatically, but what is tragic is that I can hardly read more than 6 pages of a book without pain in my eyes and seeing double.</p>

<p>My eye dr. in Germany (I’ve had this problem for a while) says that there are so many cases of severe dry eye now, not just because of our female hormonal issues, but also lifestyle issues. We spend so many hours staring at screens – computer, TV, or out car windshields, and we forget to blink.</p>

<p>In my case, I’m wondering if dry mouth problems are really diet and lifestyle problems. I drink caffeinated drinks all day long – a giant mug of tea right now. I’ve consumed more than my share of Starbuck’s. All this caffeine, and the water to chase it, just go right through you. The heated air in here is dry. Things like that.</p>

<p>I find that I crave apples, celery, watermelon and other things that are loaded with water. I always feel better when I’ve had fruit, etc. as a snack.</p>

<p>I am trying to fight this without drugs, but it’s tricky.</p>

<p>Good luck, everyone.</p>

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<p>I use Restasis for my dry eye condition. I think it helps somewhat; I am very consistent about using it twice daily. My doctor explained that it is actually an anitbiotic. (If I am recalling correctly. I was also told to take Flaxseed capsules which I have not done consistently.</p>