LUPUS UK
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#dry mouth

Since April at night i have such a dry mouth....i even get the metallic taste. Im worried about my teeth with not much saliva protecting them, and bacteria accumilation over night...Saw the dentist and i have small dental plan, so he doesnt do much unless he does a botchy root canal...I saw eye surgeon to see if its Sjogrens casue eyes are a bit dry too....both go we think your ok....MY GP wont tets for Sjogrens as she says the tests are expensive...Meanwhile i do have hypothyroidism...and was thought at one time mild lupus...The only med i take is synthroid....and im 61 and female...

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Hello Deelp,

Are you under a specialist or other health professional apart from GP?

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Not anymore, in 2015 i told rhumey i didnt want to be on hydroxy and steroids...and things are going ok so far, so he wont see me if im not on his pills...I have a new GP who is clueless, and is more worried about costs of tests and testing...

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Hi deep

I can recommend Biotene toothpaste and mouthwash for dry mouth. It's more expensive but worth it as it's an anti- bacterial that helps put saliva back into your mouth. It's really helped my mouth be healthier as saliva is important to prevent infections and fillings. It does have flouride in it too. You can buy it at Boots and Lloyds Pharmacies. Hope that helpsX

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Ya thats the one the dentist told me to get..its costly but Im grabbing some tomorrow...if it doesnt work he has some kind of lozenge you can take day and night...I just dont understand why they wont just test to see if i have the disease or not...I had funny ANA before...

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Thank you Misty14 :)

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Tell your Consultsnt if this dry mouth is new for you and then he might be willing to test you again to see what your ANA is doing dgleds!. I've got a new GP too who's not clueless thankfully but is very anti tests and testing!. I wonder if I've done right thing in going to him, only time will tell. X

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I did and she said,"So what? so you have a dry mouth and dry eyes"...I said well becasue they think i have mild lupus in the past, then maybe its Sjorgrens...? She said nope its too expensive to test for that...BUT she did send me to an eye surgeon to look at my eyes and he thinks the eyes look ok, but gave me drops..He told me she told him she has tested me extensively for Sjogrens(which is a lie) and i said no she hasnt...She lied the GP to get him to do the eye test as a back door way to have me tested, casue eye surgeon testing is free with medical services plan in canada...(In my part of canada)...I asked my dentist to look in my mouth and he was reluctant, but did, and he didnt deny...and made few suggestions..I also have a metallic taste ,and he says that cause of the dry mouth making an acid situation in my mouth and its reacting with fillings..This has been since April and its really worry me as they are all so reluctant to do much...If i had lots of money the dentist be right on top of it...crazy world..its now up side down the way stuff happens..

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I suffer from dry mouth probably lupus related or more than likely caused by prescribed medicine ( 20+ pills a day)!

I munch on pineapple and drink the juice which helps enormously.( usually tinned)

Its always worse when I wake up as I sleep with my mouth open!

Good luck, I hope you get to the bottom of the cause!

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Think of your teeth & all that sugar!

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There is something in pineapple that is good for inflammation though?

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yes, i think there is an enzyme in pineapple thats good for digestion...I love pineapple juice!!!

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I hope they help me and figure it out!! I dont want rotten teeth due to low saliva...such a bummer after looking after your teeth....

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Thank you

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I've had alot of problems with my teeth due to dry mouth. You can ask you're dentist to prescribe you a toothpaste called Duraphat and that help's to protect teeth. I've been using it for 6 month's now and I've not had any more problems as well as my sensitivity lessening. I'm also on Salivix pastels that help with dry mouth through the day and Biotene gel that I used before bed to help stimulate my saliva glands. They're not the most pleasant things, but they work. I had to ask for the two saliva replacements even after telling my doctor about my dry mouth for years. So it might be something worth bringing up with them.

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Im in Canada now..I really think they will do more for you if they think you have money..or extended medical, or a big dental plan...Im single and have ok medical, and a little dental plan, and i think they neglect lots as they dont make money off me IMO...Im almost certain they have let things go till they are root canals at times....they dont even take x rays...

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Hi DeeLP,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

According to The Lupus Encyclopedia, when the mouth becomes dry with less saliva, harmful organisms are allowed to multiply and cause damage in the mouth such as dental cavities and infections of the gums. There are certain steps you can take in order to keep the mouth moist and prevent/reduce affects caused by a lack of saliva:

-Use gum and mints that contain xylitol throughout the day. Other sugarless gums will not prevent tooth decay

-Use moisturising mouthwashes such as Biotene or TheraBreath products two to three times a day

-Brush or scrape your tongue at least once a day to remove bacteria and fungus, daily.

-Use high-fluoride toothpaste, your dentist may be able to prescribe this

-Avoid whitening-toothpaste as this can irritate teeth and gums

We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

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Hi! Thank you,

I was a member before, but i got a letter to sign up again for some reason??? I even have same avatar, but i didnt add it ??

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Hi, I am not quite sure why that has happened. Did you have to use a new email address to sign up?

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Im not sure..I do things with out thinking most times...just automatic response..

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See my reply to Blue Dragon.....have you tried XyliMelt discs.

Look on Amazon.

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I think dentist says if the biotene toothpaste doesnt work, then the lozenges be next...

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Be worried - I have gone 55 years with the odd filling without local anaesthetic and the last 12 months have been horrific, just had 2 more out at the hospital Friday and am in agony, my face is swollen and my whole head from the neck up hurts. Have now lost 6 and there is another to come out, as they are decaying from the inside out and are all pulpy and soft once extracted - even if you do not have any auto-immune thing going on, (I have just been diagnosed with Sjogrens but I reckon I have had it 10 years without it showing up, and it still isn't showing in my bloods!) get some dry mouth treatment from the chemist anyway and treat yourself ..... I wouldn't wish this on anybody :'( x

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ya well for sure i have a thyroid issue, and maybe mild lupus...which maybe is really sjorgrens or connective tissue disease...The sun doesnt do too much to me, but the odd time i have been out there too long, i will go muffled part deaf in same left ear..comes back, but that was the beginning in 2013 why they tested me etc..too many gp have come and gone from practce while ive been going thru this...they dont stick around, so u get forgot about etc...

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now that sux about your teeth!!!! Im worried to lose mine too...

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Dear DeeLP - you must insist on seeing having tests - I like many others on here have to fight with GPs who are mostly ignorant of the auto immune illnesses. Go to the British Sjogrens page bssa.org.uk or give them a call they will advise. I use Xylimelts- little discs you stick on your gums at night to keep mouth moist. You buy them on line as they are not prescribed. Duraphat 5000 is the best toothpaste and avoid sugar - I have been much better since I cut right down. Drink plenty of water or tea but not fizzy sweet drinks. Good luck and hope this helps. I have Sjogrens and Lupus and run a Sjogrens support group so have lots of remedies tried and tested. Oh, the BSSA have a list of hospitals in your area who might have a specialist. You can ask to have an appointment - I have waited 3 months but I am due to see mine next week! Keep fighting !

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Awww, thank you :)

Im in Canada now..I use to live in the UK..

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Xylimelts are made in the USA so maybe you can buy them they are all natural ingredients- very best of luck

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Thank you so much for trying to help me...Those might be the ones the Dentist showed me, but he never gave me a sample cause they were $13.00 for 40 tablets...he is cheap! LOL

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xylimelts are really good for me at night. Agedcrone suggested too. Lou x

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Thank you :)

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Hi DeeLP I suffer from mixed connective tissue disease, which is basically an umbrella term covering lupus, sjogrens etc etc. It’s important to get a good dentist who can prescribe you the correct toothpaste. I have had a trip to hospital to have a molar out and I have two more holding on. Without the care of my dentist I would have lost them by now. He also keeps an eye on what medication I take (a lot) and is careful to do any fillings without anaesthetic particularly when I have had cortisone injections in my shoulders. I hope you find someone, these conditions are bad enough to deal with, you don’t need wishy washy professionals who can’t make their minds up. Take care x

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its scary when they wont help, casue its too expensive for tests...Im in Canada..it never was like this ...

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PS/ my ANA back in 2013 was fine speckle, and homogenous and 1:320..in 2008 i was tested as a coincidence for rhumetoid artritis and back issues etc...that was 1:180, i think and same pattern...in 2013 i was on hydroxychloroquine and for 2 years...the ANA doesnt show up anymore so far...menopause sure didnt help matters...and the dumb thyroid stuff...BUT, that pattern says lupus and connective tissue, and sjorgens...Did you have that pattern too? Only other thing i had was moderate high CRP..nuthin else :)

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im in a no pain phase so far...just stupid dry mouth stuff and sometimes dry eyes since April....grrrr

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If i have missed anyone Im sorry...I just want to say thank you all for trying to help me...I like my teeth and i dont wanna lose them....I had a piece fall off one the other day eating something soft, and i crunched over on the other side, and likely cracked a tooth over there too...It was a loud crunch! Dentist did patch tooth up, but that should not be happening...Ive always had good teeth...:(

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I know, me too! I am still in a great deal of discomfort and swelling and it has been 5 days now, and I just feel awful all round really, no energy, keep falling asleep and then waking in pain (4am this morning, it's now gone 11am and am still stoned with Oramorph .... at least I have some though!) Good luck! xx

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Thank you

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by the way DeeLP and dgleds are both me...it asked me to sign up again the other day...

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