Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 in the beginning my mouth was very dry so were my eyes and feet the eye doctor tested my dry eyes and recommended an otc omega 3 fatty acid gelcap i think it was called hydro eye or hydro tear i bought it on line this was for my eyes, but 2 extra pluses were that my desert mouth turned into an oasis and my dry feet are no longer dry then when i saw a new cardiologist, and he saw that i was taking this omega 3 fatty acid, he was glad to see that i was on it from a cardiac persepective so instead of otc, he wrote a prescription for Lovaza now instead of taking 4 gel caps a day, i take 2 Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Sjogren's questionTo: Breathe-Support Date: Saturday, May 23, 2009, 5:42 PM I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Joyce - Thanks for the info. I see that Puritan has a 1000 mg Omega 3 gelcap. Do you remember the dosage you were taking before going to the prescription level? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Saturday, May 23, 2009 6:46:34 PMSubject: Re: Sjogren's question in the beginning my mouth was very dry so were my eyes and feet the eye doctor tested my dry eyes and recommended an otc omega 3 fatty acid gelcap i think it was called hydro eye or hydro tear i bought it on line this was for my eyes, but 2 extra pluses were that my desert mouth turned into an oasis and my dry feet are no longer dry then when i saw a new cardiologist, and he saw that i was taking this omega 3 fatty acid, he was glad to see that i was on it from a cardiac persepective so instead of otc, he wrote a prescription for Lovaza now instead of taking 4 gel caps a day, i take 2 Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Barbara <bamny (AT) yahoo (DOT) com>Subject: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, May 23, 2009, 5:42 PM I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 no i don't remember the dosage Barbara please check with your doctor before you order it he needs to tell you if it is safe for you and what dosage you should get Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Saturday, May 23, 2009, 7:39 PM Joyce - Thanks for the info. I see that Puritan has a 1000 mg Omega 3 gelcap. Do you remember the dosage you were taking before going to the prescription level? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, May 23, 2009 6:46:34 PMSubject: Re: Sjogren's question in the beginning my mouth was very dry so were my eyes and feet the eye doctor tested my dry eyes and recommended an otc omega 3 fatty acid gelcap i think it was called hydro eye or hydro tear i bought it on line this was for my eyes, but 2 extra pluses were that my desert mouth turned into an oasis and my dry feet are no longer dry then when i saw a new cardiologist, and he saw that i was taking this omega 3 fatty acid, he was glad to see that i was on it from a cardiac persepective so instead of otc, he wrote a prescription for Lovaza now instead of taking 4 gel caps a day, i take 2 Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Barbara <bamny (AT) yahoo (DOT) com>Subject: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, May 23, 2009, 5:42 PM I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Barbara, I do not have Sjogren's but I do have the dry mouth and dry eyes due to medications. I use Biotene or Oasis mouth wash ( they have small spray take along bottles too) and I use Refresh artifical tears for the eyes. The products are very helpful and I no longer have that sahara feeling at night. Biotene even has a 8 hour gel for dry mouth. I hope this info helps. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Barbara wrote: I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 I have a humidifier on my oxygen concentrator. That has helped me. The dry mouth is bad but the dry nose bothers me more. I haven't really had any treatment except for the dentist telling me to use Biotene and chew Trident gum to help prevent tooth decay.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, pre diabetes, IdahoSubject: Sjogren's questionTo: Breathe-Support Date: Saturday, May 23, 2009, 2:42 PM I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 I have a humidifier on my oxygen concentrator. That has helped me. The dry mouth is bad but the dry nose bothers me more. I haven't really had any treatment except for the dentist telling me to use Biotene and chew Trident gum to help prevent tooth decay.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, pre diabetes, IdahoSubject: Sjogren's questionTo: Breathe-Support Date: Saturday, May 23, 2009, 2:42 PM I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooooo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooooo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Joyce, can you find out the exact name of what worked for you. I take an omega 3 fatty acid supplement but this sounds like a topical solution? Anything that will prevent more procedures I would appreciate. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 27, 2009 6:43 AM To: Breathe-Support Subject: Re: Sjogren's question Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Wed, 5/27/09, rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com> wrote: From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Joyce, can you find out the exact name of what worked for you. I take an omega 3 fatty acid supplement but this sounds like a topical solution? Anything that will prevent more procedures I would appreciate. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 27, 2009 6:43 AM To: Breathe-Support Subject: Re: Sjogren's question Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Wed, 5/27/09, rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com> wrote: From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's question From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Barbara, ditto on the nose bleeds although they are never severe and stop right away. Now that my "Air Family" has pulled my head out of my rump and I have taken control of my medical care I will be asking my doctor about dry skin next visit. I have doctors that you have to brow beat in to giving you answers but I have dry patches on my back, arms, and thighs. I never connected it to my Sjogrens before so there you go; you are already helping someone else and you are just getting your feet wet. Thanks for bringing that up. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Barbara McD Sent: Wednesday, May 27, 2009 8:38 AM To: Breathe-Support Subject: Re: Sjogren's question Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's question From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 it was a gel cap when the cardiologist saw it on my med list, he was happy to see it and prescribed the prescription variety -- Lovaza talk to your doc Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 11:34 AM Joyce, can you find out the exact name of what worked for you. I take an omega 3 fatty acid supplement but this sounds like a topical solution? Anything that will prevent more procedures I would appreciate. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 27, 2009 6:43 AM To: Breathe-Support@ yahoogroups. com Subject: Re: Sjogren's question Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 it was a gel cap when the cardiologist saw it on my med list, he was happy to see it and prescribed the prescription variety -- Lovaza talk to your doc Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 11:34 AM Joyce, can you find out the exact name of what worked for you. I take an omega 3 fatty acid supplement but this sounds like a topical solution? Anything that will prevent more procedures I would appreciate. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 27, 2009 6:43 AM To: Breathe-Support@ yahoogroups. com Subject: Re: Sjogren's question Sunny when my eye doc did the paper test in my eye, it was bone dry too he talked about using those tubes, but found that the omega 3 fatty acid -- hydro eye? or hydro tear? -- helped so i don't need the tubes ask your doc about it it also helped with the dry mouth and dry feet Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 5:27 AM From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Barb talk to your doc before you take the over the counter variety you don't want it to interfer with your other meds or anything else going on with you Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Wednesday, May 27, 2009, 11:38 AM Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's question From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 Peggy. I've been trimming them a little but probably not enough. When I go to bed they touch my nose and the oxygen whistles at me. Thank you for the advice.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoFrom: Barbara McD <bamny (AT) yahoo (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 8:38 AM Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's questionFrom: BarbaraSent: Saturday, May 23, 2009 2:42 PMTo: Breathe-Support@ yahoogroups. comSubject: Sjogren's questionBarbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, IdahoI have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2009 Report Share Posted May 30, 2009 Peggy. I've been trimming them a little but probably not enough. When I go to bed they touch my nose and the oxygen whistles at me. Thank you for the advice.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoFrom: Barbara McD <bamny (AT) yahoo (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 8:38 AM Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's questionFrom: BarbaraSent: Saturday, May 23, 2009 2:42 PMTo: Breathe-Support@ yahoogroups. comSubject: Sjogren's questionBarbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, IdahoI have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2009 Report Share Posted May 31, 2009 I was afraid to use vasiline, but my doc said it's ok to use the Ayr saline gel just wasn't strong enough in the winter time Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sjogren's questionTo: Breathe-Support Date: Saturday, May 30, 2009, 4:08 PM  Peggy.... my doc told me...waaaay back that petroleum has something in it that can deteriorate the tubing. Of course I'm sure that matters as to how much and how often. Hope you are doing well. I feel as you do about our ML. Part sad (for me) and happy for her that her journey is completed. I talked to her the day before yesterday so we were 'all caught up'. In fact, she said, "I'm not afraid of dying"... DAMNIT! I hate this disease but it's brought joy to me too by knowing so many wonderful souls here on the board. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Sjogren's question Barbara, � I have Lupus and Sjogrens.� I use Biotin toothpaste, mouthwash and gum and also use Optiva.� My dentist has a mantra that I try to follow.� SIP - SWISH - SWALLOW.� For us it is not enough just to drink we have to wet the entire inside of our mouths.� I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times.� If you haven't already, get a sonicare.� I have already lost teeth because of my Sjogrens.� Mainly because it took them soooooooooooooooooo oo long to figure it out.� Have you had the litmus test in your eyes yet?� That's a dandy.� The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes.� YUCKY!� Mine was bone dry.� We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner.� My hardest thing with Sjogrens if having to give up soda pop.� I AM A PEPPER!� With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums.� And most of all make sure the last thing in your mouth before bed is water.� And just a warning, I have woke up before and it felt like my throat was stuck together.� I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me.� Hope this helped. � Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09,� Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is.�B � Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2009 Report Share Posted June 1, 2009 The neighbors put my phone out with their backhoe sometime last Saturday so I have a lot of catching up to do. Thank you for the canula info. I'll ask my provider.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho From: Barbara McD <bamny (AT) yahoo (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 8:38 AM Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's question From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2009 Report Share Posted June 1, 2009 The neighbors put my phone out with their backhoe sometime last Saturday so I have a lot of catching up to do. Thank you for the canula info. I'll ask my provider.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho From: Barbara McD <bamny (AT) yahoo (DOT) com>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 27, 2009, 8:38 AM Thanks, Sunny, for the advice on Sjogrens. I will try to step up the toothbrushing; my teeth have always been an issue for me. The dryeye is not too bad yet. I have had a few others offer their thoughts - THANK YOU JOYCE, LINDA AND BJ- and will try taking omega-3 caps before trying any prescriptions. It's nice to know there are solutions yet to be tried! Do any other Sjogren's sufferers have very dry skin, and/or nosebleeds? B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 27, 2009 5:27:24 AMSubject: Re: Sjogren's question From: Barbara Sent: Saturday, May 23, 2009 2:42 PM To: Breathe-Support@ yahoogroups. com Subject: Sjogren's question Barbara, I have Lupus and Sjogrens. I use Biotin toothpaste, mouthwash and gum and also use Optiva. My dentist has a mantra that I try to follow. SIP - SWISH - SWALLOW. For us it is not enough just to drink we have to wet the entire inside of our mouths. I keep a sports bottle of cold water on my headboard and every time I get up to go to the bathroom I make sure to SSS several times. If you haven't already, get a sonicare. I have already lost teeth because of my Sjogrens. Mainly because it took them soooooooooooooooooo oo long to figure it out. Have you had the litmus test in your eyes yet? That's a dandy. The doc sticks a piece of paper under your bottom eyelid then leave it 5 minutes. YUCKY! Mine was bone dry. We are discussing doing tubes to help with tear migration but then the IPF thing kind of caught us off guard so that has been put on the back burner. My hardest thing with Sjogrens if having to give up soda pop. I AM A PEPPER! With Sjogrens it is way more important to brush AT LEAST 3 times a day if not more, floss, brush your cheeks, tongue and gums. And most of all make sure the last thing in your mouth before bed is water. And just a warning, I have woke up before and it felt like my throat was stuck together. I just had to drink a little water to get things right but I know the first time it scared the bejonkers out or me. Hope this helped. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho I have noticed that there are a number of people on this forum who have Sjogren's Syndrome, as do I. My rheumy told me to use Biotin toothpaste and Biotin mouthwash, as well as Optiva (for the dry eyes). Lately, I have been waking several times during the night, because my mouth feels like the Sahara, and I need to sip some water before I can go back to sleep. This morning, as a little test, I tried to stick a tissue to my tongue (I know - a little wierd). There was absolutely NO saliva at all. I'm wondering if anyone on the forum has a similar problem, and if anyone has successfully tried some other treatment for dry mouth, and if so what it is. B Quote Link to comment Share on other sites More sharing options...
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