Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 I'm glad that you have dr. appointments. You still don't sound good. I have to say good for Rich. He really loves you. You may get depressed and think that he would be better off without you but you would be wrong. I know that he would rather be in debt and have you with him than be in even more debt and not have you. Beverley Update after pulmo doc - hate to even call him a doctor Hi Everyone, Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it. Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 I'm glad that you have dr. appointments. You still don't sound good. I have to say good for Rich. He really loves you. You may get depressed and think that he would be better off without you but you would be wrong. I know that he would rather be in debt and have you with him than be in even more debt and not have you. Beverley Update after pulmo doc - hate to even call him a doctor Hi Everyone, Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it. Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 I'm glad that you have dr. appointments. You still don't sound good. I have to say good for Rich. He really loves you. You may get depressed and think that he would be better off without you but you would be wrong. I know that he would rather be in debt and have you with him than be in even more debt and not have you. Beverley Update after pulmo doc - hate to even call him a doctor Hi Everyone, Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it. Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2009 Report Share Posted May 31, 2009 Yes  Sher I have tried everything I can stick up my nose. Ayr for some reason gets VERY hot when I exhale.. I know crazy..I really like Ocean Gel but it doesn't last all that long. So at bed time It's grease... LOLI think if my nose didn't run so much I could stand it. Joyce and I used to say we were going to stuff cotton up our noses..How is your 02 holding these days ? Have you been doing anything fun lately? Not much here except HEAT... and my cutechickens.. I love to sit and watch them. We'll be getting eggs in another month. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. 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 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 June 1, 2009 Report Share Posted June 1, 2009  Peggy... I'm sure grateful for the O2. Hard to remember when I first got it I hated it and didn't want to go out in public. I use it now with exertion and always at night. I've been feeling good lately...probably because I started on a limited time on prednisone for tendonitis in my left shoulder. Prednisone is a kicker but for a limited time I sure have more energy! We went to WalMart today and I did very well. Ready to stretch out on the sectional now. It's fun to get out and do normal things like shopping! We bought a new vacuum, whoopee! I love to watch the chickens and their little habits. Hmmmm, fresh eggs. I finally got my front deck cleaned up and added a fountain in the corner...really nice to hear the water. Hung a couple of plants and a couple new chairs and it's comfy there now. I'll bet Bruce is putting up his silk flowers! Hey Bruce, is that ok with ?? lol We're enjoying the mid 80s here. Hannah went to Prom last weekend. I can't wait to get a picture. I'll post it so you can see it too. She went to Homecoming Dance too. I'm so glad for her that she does these great school things. Her student exchange to Japan was cancelled due to the Swine Flu...she is so disappointed. Maybe later. Give yourself a hug from me. Love ya. I miss ML, don't you too. And I've thought of Joyce too the past two days, and Sherry and the rest. 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... I'm sure grateful for the O2. Hard to remember when I first got it I hated it and didn't want to go out in public. I use it now with exertion and always at night. I've been feeling good lately...probably because I started on a limited time on prednisone for tendonitis in my left shoulder. Prednisone is a kicker but for a limited time I sure have more energy! We went to WalMart today and I did very well. Ready to stretch out on the sectional now. It's fun to get out and do normal things like shopping! We bought a new vacuum, whoopee! I love to watch the chickens and their little habits. Hmmmm, fresh eggs. I finally got my front deck cleaned up and added a fountain in the corner...really nice to hear the water. Hung a couple of plants and a couple new chairs and it's comfy there now. I'll bet Bruce is putting up his silk flowers! Hey Bruce, is that ok with ?? lol We're enjoying the mid 80s here. Hannah went to Prom last weekend. I can't wait to get a picture. I'll post it so you can see it too. She went to Homecoming Dance too. I'm so glad for her that she does these great school things. Her student exchange to Japan was cancelled due to the Swine Flu...she is so disappointed. Maybe later. Give yourself a hug from me. Love ya. I miss ML, don't you too. And I've thought of Joyce too the past two days, and Sherry and the rest. 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 Sher I remember when you went back on oxygen. You immediately started getting out more and being more active. Now, the part I also see in reflection back is that you also started doing more projects even inside. It was much like a CPAP in that you hate it but find out you're so much better off with it. So, you learn to love it. I get out nearly every day and I know that had I not been diagnosed and not been on oxygen, I'd be sitting around doing nothing. Furthermore, I'd be depressed because of my lack of ability to do anything. As to the silk flowers, would let me but she's not a proponent in spite of her best friend winning Yard of the Month with them. I was actually going to put them in a small area in the back yard where its hard to get grass to grow, but even artificial requires some work such as changing them out with the seasons. I decided it just wasn't one of those things I wanted to spend my time on. We have mostly shrubs and bushes. We do have two extremely large pots near the road where we had our yard man plant some flowers. They won't last like my fake ones though...lol. Mostly, we're not looking for anything that requires attention or work. I'll leave my gardening to farmtown on facebook. I've got a very nice farm there. > > > From: Barbara McD bamny (AT) yahoo (DOT) com> > Subject: Re: Sjogren's question > To: Breathe-Support@ yahoogroups. com > Date: 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. com > Sent:�Wednesday, May 27, 2009 5:27:24 AM > Subject:�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 Sher I remember when you went back on oxygen. You immediately started getting out more and being more active. Now, the part I also see in reflection back is that you also started doing more projects even inside. It was much like a CPAP in that you hate it but find out you're so much better off with it. So, you learn to love it. I get out nearly every day and I know that had I not been diagnosed and not been on oxygen, I'd be sitting around doing nothing. Furthermore, I'd be depressed because of my lack of ability to do anything. As to the silk flowers, would let me but she's not a proponent in spite of her best friend winning Yard of the Month with them. I was actually going to put them in a small area in the back yard where its hard to get grass to grow, but even artificial requires some work such as changing them out with the seasons. I decided it just wasn't one of those things I wanted to spend my time on. We have mostly shrubs and bushes. We do have two extremely large pots near the road where we had our yard man plant some flowers. They won't last like my fake ones though...lol. Mostly, we're not looking for anything that requires attention or work. I'll leave my gardening to farmtown on facebook. I've got a very nice farm there. > > > From: Barbara McD bamny (AT) yahoo (DOT) com> > Subject: Re: Sjogren's question > To: Breathe-Support@ yahoogroups. com > Date: 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. com > Sent:�Wednesday, May 27, 2009 5:27:24 AM > Subject:�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 Bruce... I don't go out every day but now when I want to 'go out' I can do it and feel comfortable with the o2. As I told Peggy, the short term prednisone I'm on actually makes me feel better...short term but for a few days it feels good to feel good and have some energy. I'm supposing you two are fairly well settled in...do you like it now that you are "in"? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Sjogren'squestion> Barbara,> �> I have Lupus and Sjogrens.� I use Biotintoothpaste, mouthwash and gum and also use Optiva.� My dentist hasa mantra that I try to follow.� SIP - SWISH - SWALLOW.� For usit is not enough just to drink we have to wet the entire inside of ourmouths.� I keep a sports bottle of cold water on my headboard andevery time I get up to go to the bathroom I make sure to SSS severaltimes.� If you haven't already, get a sonicare.� I havealready lost teeth because of my Sjogrens.� Mainly because it tookthem soooooooooooooooooo oo long to figure it out.� Have you hadthe litmus test in your eyes yet?� That's a dandy.� The docsticks a piece of paper under your bottom eyelid then leave it 5minutes.� YUCKY!� Mine was bone dry.� We are discussingdoing tubes to help with tear migration but then the IPF thing kind ofcaught us off guard so that has been put on the back burner.� Myhardest thing with Sjogrens if having to give up soda pop.� I AM APEPPER!� With Sjogrens it is way more important to brush AT LEAST 3times a day if not more, floss, brush your cheeks, tongue andgums.� And most of all make sure the last thing in your mouthbefore bed is water.� And just a warning, I have woke up before andit felt like my throat was stuck together.� I just had to drink alittle water to get things right but I know the first time it scared thebejonkers out or me.� Hope this helped.> �> Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, HiatalHernia '09,� Idaho>>> I have noticed that there are a number of peopleon this forum who have Sjogren's Syndrome, as do I. My rheumy told me touse Biotin toothpaste and Biotin mouthwash, as well as Optiva (for thedry eyes). Lately, I have been waking several times during the night,because my mouth feels like the Sahara, and I need to sip some waterbefore I can go back to sleep. This morning, as a little test, I triedto stick a tissue to my tongue (I know - a little wierd). There wasabsolutely NO saliva at all. I'm wondering if anyone on the forum has asimilar problem, and if anyone has successfully tried some othertreatment 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 Bruce... I don't go out every day but now when I want to 'go out' I can do it and feel comfortable with the o2. As I told Peggy, the short term prednisone I'm on actually makes me feel better...short term but for a few days it feels good to feel good and have some energy. I'm supposing you two are fairly well settled in...do you like it now that you are "in"? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Sjogren'squestion> Barbara,> �> I have Lupus and Sjogrens.� I use Biotintoothpaste, mouthwash and gum and also use Optiva.� My dentist hasa mantra that I try to follow.� SIP - SWISH - SWALLOW.� For usit is not enough just to drink we have to wet the entire inside of ourmouths.� I keep a sports bottle of cold water on my headboard andevery time I get up to go to the bathroom I make sure to SSS severaltimes.� If you haven't already, get a sonicare.� I havealready lost teeth because of my Sjogrens.� Mainly because it tookthem soooooooooooooooooo oo long to figure it out.� Have you hadthe litmus test in your eyes yet?� That's a dandy.� The docsticks a piece of paper under your bottom eyelid then leave it 5minutes.� YUCKY!� Mine was bone dry.� We are discussingdoing tubes to help with tear migration but then the IPF thing kind ofcaught us off guard so that has been put on the back burner.� Myhardest thing with Sjogrens if having to give up soda pop.� I AM APEPPER!� With Sjogrens it is way more important to brush AT LEAST 3times a day if not more, floss, brush your cheeks, tongue andgums.� And most of all make sure the last thing in your mouthbefore bed is water.� And just a warning, I have woke up before andit felt like my throat was stuck together.� I just had to drink alittle water to get things right but I know the first time it scared thebejonkers out or me.� Hope this helped.> �> Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, HiatalHernia '09,� Idaho>>> I have noticed that there are a number of peopleon this forum who have Sjogren's Syndrome, as do I. My rheumy told me touse Biotin toothpaste and Biotin mouthwash, as well as Optiva (for thedry eyes). Lately, I have been waking several times during the night,because my mouth feels like the Sahara, and I need to sip some waterbefore I can go back to sleep. This morning, as a little test, I triedto stick a tissue to my tongue (I know - a little wierd). There wasabsolutely NO saliva at all. I'm wondering if anyone on the forum has asimilar problem, and if anyone has successfully tried some othertreatment 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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