Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Hello just got diagnosed with Sjogrens by my eye docotor. He said to use natural eye drops but if that doesn't work Restasis I guess I should call my rheumy and let him know about this. What do you think? My mouth is not dry. Only at night. and in the morning. I take Humira and voltaren for my RA Does not always work. Any input would help thanks Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I'm still trying to figure it out too Sandy. The problem is the same as with every other auto-immune thing out there: no two people will react the same. I would let your Rheumy know first thing on Monday. He needs to know and may want to see you. I am sure he will give you some ideas on where to go from here. My eyes are always dry and feel gritty. My gums always feel dry and I want to drink but it never seems to be enough. It isn't about thirst anyway. My Rheumy put me on Plaquinil two weeks ago and today was my first day on two pills a day instead of one. Hugs, Jacy ~Of all the things I've lost, I miss my mind the most. jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose Want a signature like this? ----- Original Message ----- From: beacon348 Rheumatoid Arthritis Sent: Saturday, March 26, 2005 19:08 Subject: diagnosed with Sjogrens Hello just got diagnosed withSjogrens by my eye docotor.He said to use natural eye dropsbut if that doesn't work RestasisI guess I should call my rheumy andlet him know about this. What do you think? My mouth is not dry. Onlyat night. and in the morning.I take Humira and voltaren for my RADoes not always work. Any input would helpthanks Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I have found that Gatorade and lots of fluids help with the syndrome. I have it also. I use an opthalmic eye drop called Patanol. Be well, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Jacy, I have Sjogrens too, and my eyes always bother me at night when I'm working on the computer or trying to read. A lot of times I just give up and go to bed early because it's such a problem. However, someone on this list mentioned a while back that they had fewer problems if they drank a lot of water. I'm in a supervisory position at school now, rather than in the classroom, so I have access to the bathroom whenever I want<g>.. I decided to try it. I've been doing this for about ten months now, and there's a definite correlation between the amount of water I drink and how dry my mouth/eyes are. If I drink a lot of water in the morning when I get there(1 liter), after my usual intake at home, I'm good until I get home at about 2pm. Then I'll drink another liter or so in the afternoon, and then maybe one more in the evening. Of course I'm up about twice during the night, but it really makes a big difference with my eyes. I can go without eye drops at all when I do that. If I limit my water, I'll have to use drops constantly in the evening to be able to get my eyes open and move them. ----- Original Message ----- From: Jacy Rheumatoid Arthritis Sent: Saturday, March 26, 2005 9:36 PM Subject: Re: diagnosed with Sjogrens I'm still trying to figure it out too Sandy. The problem is the same as with every other auto-immune thing out there: no two people will react the same. I would let your Rheumy know first thing on Monday. He needs to know and may want to see you. I am sure he will give you some ideas on where to go from here. My eyes are always dry and feel gritty. My gums always feel dry and I want to drink but it never seems to be enough. It isn't about thirst anyway. My Rheumy put me on Plaquinil two weeks ago and today was my first day on two pills a day instead of one. Hugs, Jacy ~Of all the things I've lost, I miss my mind the most. jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose Want a signature like this? ----- Original Message ----- From: beacon348 Rheumatoid Arthritis Sent: Saturday, March 26, 2005 19:08 Subject: diagnosed with Sjogrens Hello just got diagnosed withSjogrens by my eye docotor.He said to use natural eye dropsbut if that doesn't work RestasisI guess I should call my rheumy andlet him know about this. What do you think? My mouth is not dry. Onlyat night. and in the morning.I take Humira and voltaren for my RADoes not always work. Any input would helpthanks Sandy No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Input LOTS of water!! It really does work. ----- Original Message ----- From: beacon348 Rheumatoid Arthritis Sent: Saturday, March 26, 2005 9:08 PM Subject: diagnosed with Sjogrens Hello just got diagnosed withSjogrens by my eye docotor.He said to use natural eye dropsbut if that doesn't work RestasisI guess I should call my rheumy andlet him know about this. What do you think? My mouth is not dry. Onlyat night. and in the morning.I take Humira and voltaren for my RADoes not always work. Any input would helpthanks Sandy No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 ----- Original Message ----- From: beacon348 > Hello just got diagnosed with Sjogrens by my eye doctor. He said to use natural eye dropsbut if that doesn't work Restasis. If you try the Restasis (it's a prescription & expensive), be sure to use tears (such as Refresh) about 15 minutes before the Restasis. It will really help with the burning (which should stop within a couple of weeks). Also, keep your eyes away from drafts for a couple of minutes after using. It really helps keep the burning from being a problem (which often makes people quit using it before they give it a chance to work). I was diagnosed with Sjogren's in 1999, though from the symptoms, I'm sure I had it in 1980 or earlier. The Restasis has made a huge difference for me. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I drink a lot of water too. It does seem to help. ----- Original Message ----- From: Hasenstab Rheumatoid Arthritis Sent: Sunday, March 27, 2005 06:27 Subject: Re: diagnosed with Sjogrens Jacy, I have Sjogrens too, and my eyes always bother me at night when I'm working on the computer or trying to read. A lot of times I just give up and go to bed early because it's such a problem. However, someone on this list mentioned a while back that they had fewer problems if they drank a lot of water. I'm in a supervisory position at school now, rather than in the classroom, so I have access to the bathroom whenever I want<g>.. I decided to try it. I've been doing this for about ten months now, and there's a definite correlation between the amount of water I drink and how dry my mouth/eyes are. If I drink a lot of water in the morning when I get there(1 liter), after my usual intake at home, I'm good until I get home at about 2pm. Then I'll drink another liter or so in the afternoon, and then maybe one more in the evening. Of course I'm up about twice during the night, but it really makes a big difference with my eyes. I can go without eye drops at all when I do that. If I limit my water, I'll have to use drops constantly in the evening to be able to get my eyes open and move them. ----- Original Message ----- From: Jacy Rheumatoid Arthritis Sent: Saturday, March 26, 2005 9:36 PM Subject: Re: diagnosed with Sjogrens I'm still trying to figure it out too Sandy. The problem is the same as with every other auto-immune thing out there: no two people will react the same. I would let your Rheumy know first thing on Monday. He needs to know and may want to see you. I am sure he will give you some ideas on where to go from here. My eyes are always dry and feel gritty. My gums always feel dry and I want to drink but it never seems to be enough. It isn't about thirst anyway. My Rheumy put me on Plaquinil two weeks ago and today was my first day on two pills a day instead of one. Hugs, Jacy ~Of all the things I've lost, I miss my mind the most. jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose Want a signature like this? ----- Original Message ----- From: beacon348 Rheumatoid Arthritis Sent: Saturday, March 26, 2005 19:08 Subject: diagnosed with Sjogrens Hello just got diagnosed withSjogrens by my eye docotor.He said to use natural eye dropsbut if that doesn't work RestasisI guess I should call my rheumy andlet him know about this. What do you think? My mouth is not dry. Onlyat night. and in the morning.I take Humira and voltaren for my RADoes not always work. Any input would helpthanks Sandy No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Does it keep your eyes from getting dry, or just help when they do? ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Sunday, March 27, 2005 1:00 PM Subject: Re: diagnosed with Sjogrens ----- Original Message ----- From: beacon348 > Hello just got diagnosed with Sjogrens by my eye doctor. He said to use natural eye dropsbut if that doesn't work Restasis. If you try the Restasis (it's a prescription & expensive), be sure to use tears (such as Refresh) about 15 minutes before the Restasis. It will really help with the burning (which should stop within a couple of weeks). Also, keep your eyes away from drafts for a couple of minutes after using. It really helps keep the burning from being a problem (which often makes people quit using it before they give it a chance to work). I was diagnosed with Sjogren's in 1999, though from the symptoms, I'm sure I had it in 1980 or earlier. The Restasis has made a huge difference for me. Nina No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 ----- Original Message ----- From: Hasenstab > Does it keep your eyes from getting dry, or just help when they do? Restasis is an immunosuppressant (what a big word!). It is not to be used as a substitute for artificial tears. What it will do is have you using them much, much less. I love it. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 It certainly sounds worth investigating. When my eyes are really bad, I could use the artificial tears every ten minutes. They work for about five minutes and then they're dry again. ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Sunday, March 27, 2005 5:29 PM Subject: Re: diagnosed with Sjogrens ----- Original Message ----- From: Hasenstab > Does it keep your eyes from getting dry, or just help when they do? Restasis is an immunosuppressant (what a big word!). It is not to be used as a substitute for artificial tears. What it will do is have you using them much, much less. I love it. Nina No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 ----- Original Message ----- From: Hasenstab > It certainly sounds worth investigating. When my eyes are really bad, I could use the artificial tears every ten minutes. They work for about five minutes and then they're dry again. Definitely worth trying. I used to be the same way. Now I only use tears about 3 times a day. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I don't use them like that. I might use them once in the morning on bad days, but then about 9pm my eyes are so dry that I can't do anything and I use them about five times an hour until I give up. When I wake up, even when I use that gel, occasionally my eyes will be so dry that I can't get them open. Then sometimes I can go for days and days without using them at all. ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Sunday, March 27, 2005 5:41 PM Subject: Re: diagnosed with Sjogrens ----- Original Message ----- From: Hasenstab > It certainly sounds worth investigating. When my eyes are really bad, I could use the artificial tears every ten minutes. They work for about five minutes and then they're dry again. Definitely worth trying. I used to be the same way. Now I only use tears about 3 times a day. Nina No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 ----- Original Message ----- From: Hasenstab > I don't use them like that. I might use them once in the morning on bad days, but then about 9pm my eyes are so dry that I can't do anything and I use them about five times an hour until I give up. When I wake up, even when I use that gel, occasionally my eyes will be so dry that I can't get them open. Then sometimes I can go for days and days without using them at all. With Restasis, I use drops before I go to bed and my eyes still aren't too dry when I wake up. Totally changed the way I have to use tears. I also have had no further abrasions form on my eyes since starting it. I had tried the plugs and even had the bottom ducts cautwrized shut. But nothing helped like the Restasis. Some people have not had as good of luck with it. Like everything else, it varies with the individual. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 ----- Original Message ----- From: Nina I'm typing with 1 finger today. Sorry, that should read "cauterized". Nina I had tried the plugs and even had the bottom ducts cautwrized shut. But nothing helped like the Restasis. Some people have not had as good of luck with it. Like everything else, it varies with the individual. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I need to go to the ophthalmologist in April anyway, and I'm going to ask about it. It's worth a try. Thanks! ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Sunday, March 27, 2005 5:55 PM Subject: Re: diagnosed with Sjogrens ----- Original Message ----- From: Hasenstab > I don't use them like that. I might use them once in the morning on bad days, but then about 9pm my eyes are so dry that I can't do anything and I use them about five times an hour until I give up. When I wake up, even when I use that gel, occasionally my eyes will be so dry that I can't get them open. Then sometimes I can go for days and days without using them at all. With Restasis, I use drops before I go to bed and my eyes still aren't too dry when I wake up. Totally changed the way I have to use tears. I also have had no further abrasions form on my eyes since starting it. I had tried the plugs and even had the bottom ducts cautwrized shut. But nothing helped like the Restasis. Some people have not had as good of luck with it. Like everything else, it varies with the individual. Nina No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 I figured that<g>. ----- Original Message ----- From: Nina Rheumatoid Arthritis Sent: Sunday, March 27, 2005 5:56 PM Subject: Re: diagnosed with Sjogrens ----- Original Message ----- From: Nina I'm typing with 1 finger today. Sorry, that should read "cauterized". Nina I had tried the plugs and even had the bottom ducts cautwrized shut. But nothing helped like the Restasis. Some people have not had as good of luck with it. Like everything else, it varies with the individual. Nina No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.8.3 - Release Date: 03/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 ----- Original Message ----- From: Hasenstab > I get eye infections several times a year. I have to be very careful not to touch my eyes, and to wash my hands about a million times a day. I've had some bad ones. Some docs have recently started handing out holders for the vials so they won't get contaminated. If your doc prescribes Restasis, ask if he has any of the holders (I'm guessing they get them from the Restasis people). When I went to my opthamologist in January for my baseline test for beginning Plaquenil, he didn't have any. Nina Quote Link to comment Share on other sites More sharing options...
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