Guest guest Posted May 31, 2009 Report Share Posted May 31, 2009  Have you tried AYR, Peggy? It's good too. There are many products. 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 May 31, 2009 Report Share Posted May 31, 2009  Have you tried AYR, Peggy? It's good too. There are many products. 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 Peggy what kind of hoses do you buy? Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PinkTo: Breathe-Support Date: Sunday, May 31, 2009, 8:20 PM Pink, The drawback to using Vaseline is the tubing gets hard on the nose pieces. Sher just posted that and I had been wondering what was happening with my soft hoses.. But there are times I am so dry I use Vaseline. It is so soothing. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. 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 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 I use "soft hose"  there is a web site www.softhose.com I have been using them for 4 years I know. But now I have a hard time using the free ones the supplier gives me. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. Peggy what kind of hoses do you buy? Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PinkTo: Breathe-Support Date: Sunday, May 31, 2009, 8:20 PM Pink, The drawback to using Vaseline is the tubing gets hard on the nose pieces. Sher just posted that and I had been wondering what was happening with my soft hoses.. But there are times I am so dry I use Vaseline. It is so soothing. Love and Prayers, Peggy   IPF  2004,  Florida Worry looks around,  Sorry looks back,   Faith looks up. <pastedGraphic.tiff> 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--- On Sat, 5/30/09, Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: 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 I use "soft hose"  there is a web site www.softhose.com I have been using them for 4 years I know. But now I have a hard time using the free ones the supplier gives me. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. Peggy what kind of hoses do you buy? Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PinkTo: Breathe-Support Date: Sunday, May 31, 2009, 8:20 PM Pink, The drawback to using Vaseline is the tubing gets hard on the nose pieces. Sher just posted that and I had been wondering what was happening with my soft hoses.. But there are times I am so dry I use Vaseline. It is so soothing. Love and Prayers, Peggy   IPF  2004,  Florida Worry looks around,  Sorry looks back,   Faith looks up. <pastedGraphic.tiff> 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--- On Sat, 5/30/09, Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Sjogren's questionTo: Breathe-Support@ yahoogroups. comDate: 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...
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