Dry mouth

Hi everyone I haven't posted on here for a while but wonder if anyone can help. For the past few weeks I have been suffering with a really dry mouth which gets worse as the day goes on. I have been to the doctor and she sent me for blood tests to check for Sjogrens syndrome but tests came back negative. This problem is driving me mad, I have tried drinking water regularly, sucking boiled sweets and even changing my toothpaste as it seems to get worse after cleaning my teeth but nothing I have tried has helped. I will go back to the doctor but anyone have any ideas in the meantime? Thanks.

15 Replies

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  • Hi, I have primary APS. When they cheked for Sjögrens syndrom on me I had to sit over a "cup" and the saliva secretion was meant to fill the cup for I think if was over 5 or 10 minutes or something. I felt ridiculous!

    I was almost approved for this test but negative for the eyes.

    So ask them to do the same test as I did. We know now that antibodies can be negative but the symptoms are there all the same.

    Good Luck

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin will ask doctor about this.

  • My tests came back negative at first, for dry eyes & mouth. They did the litmuss test on my eyes which was so positive, they checked bloods again. Was told that I had SS even though bloods didnt show. Took 4 years for it to show in my bloods! Take eye drops for my eyes & Glandosane saliva (yes its revolting, but stops dry mouth & ulcers developing) for my mouth. I get these on prescription, not sure if you can get over the counter but worth trying.

  • As everyone says above blood tests like in Hughes syndrome can be seronegative. If you have all the symptoms go back and see your GP. Explain that this condition often runs with APS and also with Thyroid condition so get that checked too along with your VIT D, ferritin, B12. I have all three of these and have often got ulcers in my mouth. I find that chewing the M&S sugar free gum helps a lot too. I've also got a mouth spray called Dry Mouth Gel Mouth Spray by Bioxtra - Lifestream Pharma which the hospital prescribed. I also learnt to my cost recently that not having optimum levels of minerals such as magnesium, iron, calcium and all the B's can mean that you can't absorb your medications properly and my thyroid in particular started to throw a real wobbly act.

  • I get this if my anticoagulation is not right, even though I'm now on Fragmin I still seem to occasionally have a day when the injection seems not to have worked properly, then dry mouth is a big issue, usually followed by a TIA and/or migraine.

    Dave

  • Hi Dave! I had never experienced dry mouth before, until I started warfarin 2 months ago, so I think it could be (in my case) some side effect from the drug. So I was just wondering, do you get it when you are over or under your INR target?

  • Hi

    I've never had a dry mouth because of Warfarin but I did have it before I was diagnosed with APS, so when I wasn't anticoagulated. I had it in may last year, on one occasion, even on Fragmin and I can only assume that my body had not absorbed that day's injection correctly.

    Dave

  • I have never heard there are any side effects from Warfarin other than bleedings (very rare for us with thick blood) but Sjögrens syndrome will give dry mouth and eyes.

    You can test negative to Sjögrens and still have the symptoms. Thyroid-issues and Sjögrens and Hughes Syndrome go hand in hand very often.

    Best wishes from Kerstin in Stockholm

  • Do also ask your GP to do Schirmer's Eye Test, as that may give another clue, easy to do. Also a general check up with your main consultant. taking into account of course the warmer weather we have had. MaryF

  • Thanks Mary I will ask my doctor about this test.

  • I take the prescription Evoxac for dry mouth (increases saliva). It has made a huge difference! Also, chewing gum helps. It's best to get gum with xylitol (Trident has it).

  • There are tablets called Xylimelts available on the net (but I didn't find them terribly useful) and now I get a toothpaste called Biotene (made for dry mouth) and a gel by same people. I find I wake through the night with my mouth glued together and I can just squeeze a bit of the gel and get back to sleep. Before I changed toothpaste I did notice that the dry mouth was worse after brushing.

  • Thanks everyone for your comments. I will go back to doctors tomorrow and see what she says.

  • Also, check your meds side effects, I was taking an anti allergy drug that was making dryness worse. I have Sjogens for many years. But if it is a new symptom make sure it isn't a new drug.

  • Hello! Thank you for answering Dave, Kerstin and Ann, as I said, I had never experienced this symptom before until I started warfarin (Coumadin) just 2 months ago, and that's the only medication I'm having right now. I have to say I'm taking a high dose (12.5 to 13.75 mg daily) in order to maintain my INR around 3.5. I was on Xarelto before and never experienced dry mouth (not even before, when I wasn't anticoagulated at all), but decided to switch to warfarin as it seems to be safer. I was just wondering from Dave's comment whether or not my INR being a bit under or over range could be causing this too... or maybe it's just a coincidence and I do have some Sjögrens symptoms... I don't know.

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