Does anyone here have Sjogrens ? I found out during my last visit to the Rheumy that I have that too. I thought my terrible dry mouth was the result of my medication. How does this affect you? (those who have it)
Hi, I don't know much about Sjuoren's but there is a forum on Ben's Friends for Sjoren's Syndrome.
thanks. I don't pay much attention to having it. I know my dry mouth is from that. It also causes joint pain but the PsA seems to be enough to account for my level of pain. They have the same treatments so it doesn't really matter
HI Qad, PsA is my primary, Sjogren's and Rayanud's are secondary!
Bioteen mouth/teeth products, and gallons of eye drops are my best defense. Hopefully the Enbrel is helping all of it!
Dry mouth, dry eyes, tooth loss... not fun, it is a systemic autoimmune also, meaning it affects every cell of the body! I tried the Restasis, I compare it to lambs pepper spray to keep bears at bay! For me that sting never went away, but it really does help some people!
Frances is right, there is a great BF group for Sjogren's I belong there too!
hi ...thanks for the replies..I just joined the Sjogren's forum also Thanks for that plug.
SK said:
HI Qad, PsA is my primary, Sjogren's and Rayanud's are secondary!
Bioteen mouth/teeth products, and gallons of eye drops are my best defense. Hopefully the Enbrel is helping all of it!
Dry mouth, dry eyes, tooth loss... not fun, it is a systemic autoimmune also, meaning it affects every cell of the body! I tried the Restasis, I compare it to lambs pepper spray to keep bears at bay! For me that sting never went away, but it really does help some people!
Frances is right, there is a great BF group for Sjogren's I belong there too!
Okay, second try. I have PsA, Sjogren's and Raynauds, same as SK. It's really about managing symptoms. I quickly progressed to the point that I use Restasis and lubricating eye drops, as well as having all of my tear ducts plugged. I may need to do still more, as my eyes are still a bit of a wreck. I have extreme dry mouth, and last year presented to my rheumy with major mouth sores, and extreme dryness. She put me on Evoxac, and this has greatly improved things. I still get dry, but it isn't as bad. I use saline spray for my nose. I have been lucky so far, that it hasn't hit my lady parts (yet).
I'm not going to say that it's going great, but it is manageable. I'm 99% certain that the Sjogren's is behind my occasional breathing troubles.
wow. There is so much you people can teach me. I'm finding out how little I know. thanks Stoney for your reply.
Stoney said:
Okay, second try. I have PsA, Sjogren's and Raynauds, same as SK. It's really about managing symptoms. I quickly progressed to the point that I use Restasis and lubricating eye drops, as well as having all of my tear ducts plugged. I may need to do still more, as my eyes are still a bit of a wreck. I have extreme dry mouth, and last year presented to my rheumy with major mouth sores, and extreme dryness. She put me on Evoxac, and this has greatly improved things. I still get dry, but it isn't as bad. I use saline spray for my nose. I have been lucky so far, that it hasn't hit my lady parts (yet).
I'm not going to say that it's going great, but it is manageable. I'm 99% certain that the Sjogren's is behind my occasional breathing troubles.
Definitely look up the Sjogren's support site too. Not as active, but a treasure trove of experience. I got some good tips and advice from people in preparation for my hand surgery. You may want to keep this in mind prior to your shoulder surgery as well, especially because you'll likely have general anesthesia. There are some considerations for you.
I do not have Sjogren's, but my mouth becomes VERY dry with any narcotic pain med. My dentist finally worked with me and suggested I use the Biotine products like SK suggests. I rinse many times through the day, and it helps cut down on mouth sores (I get them when taking narcotics for any length of time leads to longer term dryness) and major dental work. In fact I need to get better about rinsing again, because I've had a tough few days, needed to take pain meds, and I already have a large sore on my tongue from the dryness. Sigh.
SK said:
Bioteen mouth/teeth products, and gallons of eye drops are my best defense.
Do you need a prescription for Biotene?
What I have been doing is cutting up a lemon thinly and then putting the segments into bottles of water. I find that to be helpful. Also sucking on a lemon drop..
Marietta said:
I do not have Sjogren's, but my mouth becomes VERY dry with any narcotic pain med. My dentist finally worked with me and suggested I use the Biotine products like SK suggests. I rinse many times through the day, and it helps cut down on mouth sores (I get them when taking narcotics for any length of time leads to longer term dryness) and major dental work. In fact I need to get better about rinsing again, because I've had a tough few days, needed to take pain meds, and I already have a large sore on my tongue from the dryness. Sigh.
SK said:Bioteen mouth/teeth products, and gallons of eye drops are my best defense.
No prescription needed. Bioteen is over the counter. They have several products.
Quadosh2him- You mentioned lemon drops. . . Make sure you are using sugar-free. The best sucking candies and gum have xylitol as either the main sweetener, or one of the sweeteners. The main reason for this is that biotene kills germs in your mouth, so it lowers your risk of cavities. My son had really bad cavities early in life, and we used xylitol products a lot. Including xylitol toothpastes for him, and it helped to slow down cavity development.
thanks for the advice. I will have to look around for some.
I was just placing my order from Shop Rite for delivery tomorrow. I thought "What the heck..." And I checked to see if they had Biotene Products and they had a very good line of their products....so I ordered a few of them and will see if they help. Thanks for the heads up on sugared candies. The last thing I need is dental problems. I ordered two packs of sugar free candies.
I hope you are having a great Sunday.
gren's, but my mouth becomes VERY dry with any narcotic pain med. My dentist finally worked with me and suggested I use the Biotine products like SK suggests. I rinse many times through the day, and it helps cut down on mouth sores (I get them when taking narcotics for any length of time leads to longer term dryness) and major dental work. In fact I need to get better about rinsing again, because I've had a tough few days, needed to take pain meds, and I already have a large sore on my tongue from the dryness. Sigh.
SK said:
Bioteen mouth/teeth products, and gallons of eye drops are my best defense.