Just trying to navigate around this site. Not really computer savvy. I was diagnosed with Lupus about 25 yrs.ago. Then 10 months ago started getting dry mouth. Which has turned into a real nightmare. Was diagnosed with Sjogrens last Dec. Nothing has ever hurt so bad in my life. They gave me Evoxac which didn’t work and made my face swell. So now it’s ibuprofen or Aleve,which hardly work at all. Anyone have any tips on what to do for the pain. Thank you.
I’m sorry that you’re having such a rough time with this. There is another medication that can be used to increase saliva that you can ask about. Sometimes people may also need systemic meds, so this is definitely something to talk about with your doctor.
There are also home management strategies that can be used, including biotene and other dry mouth products.
Does anyone have suggestions for Greeneyes to help her out with management strategies?
Another Rx called pilocarpine/salogen--works for me. Until you get the Rx you can swish about a tsp of coconut oil. Dry mouth products never worked for me.
I have severe SS it is fairly well controlled with pilocardine 5 mg 4 times a day.
My eye doctor sells eye relief by Doctors advantage as my eye drops are OTC Systane ultra.
Must have sugar free coughs drops.
I’m new to all of this too. My eye Dr said to use Systane drops as well and the gel at night. I’m not on anything for pain except Naprosyn which doesn’t help. I’m waiting on a book that I ordered that will hopefully have some useful info. I hope you find some relief
As others have said, look into getting pilocarpine. I have found it to help so much. It takes a long time for it to do anything though, you have to take it 4 times a day, every day for 3 months before it takes effect. Be patient though and suddenly one day you will find yourself with a mouthful of saliva and you will want to cry with joy… or at least that was me.
As for pain, what kind of pain are you experiencing?
Below: a really long post, with tips for dealing with all sorts of kinds of pain.
For me, I experience a few kinds. Pain from dry eyes, pain from dry mouth, pain in my salivary glands themselves, and general body pain. I treat these symptomatically.
For dry eyes I use eye drops, over the counter Systane or systane ultra. DO NOT USE VISINE or other cheap eye drops like that. They actually dry out your eyes more!
For dry mouth… I have tried Biotine and that moisture spray stuff. I find they taste awful and the relief is only for a very short time. But I would recommend trying, because everyone is different! And if/when you get worse, try again because you may find that it helps later on. Drink lots of water. Brush your teeth regularly (at least twice a day) with high fluoride toothpaste, and floss, and use a mouthwash without alcohol so it doesn’t try you out further.
It is kinda gross, but sometimes when I am super dry I just put a layer of Vaseline in my mouth and in my nose so I can breathe without it drying everything up. Usually I do this when going to sleep at night if I am really dry. But sometimes I do it in the day too if it is just bad.
If it’s your salivary glands that are painful, try milking them. I am on my phone so I don’t have the link handy, but you can Google “how to milk salivary glands” and you will find it. Be warned, it can hurt, and if you have an infection in your glands it can… make the pus spurt into your mouth. Grossest thing ever, but once I did that I was able to eat for the first time in a month without pain! (Back when I was first diagnosed.)
Also if your salivary glands hurt, warm wet heat is the best. Heating pads are alright. If you have one of those microwavable Magic Bags then those help. Even a washcloth dipped on warm/hot water and held up to your face can bring relief. So can drinking tea. Hopefully you like warm beverages. I find black tea makes me a little drier, so I go more herbal/green with my tea usually, but again that might be something you will have to discover for yourself. Even a glass of warm milk can be nice and relieving. Eating soup can be good. Avoid dry goods like crackers or dry bread.
For full body pain, I don’t do much most days. It’s there, and I am aware if it, but usually I can function okay. When it gets bad, I take advil or tylenol, or some T3s. A hot bath can help (Epsom salts are supposed to be good), as can a heating pad, or a massage. (I recommend using a nice unscented lotion like Aveeno, since it is soothing but won’t irritate your nose if you are sensitive, and it helps hydrate the skin, which can be an issue too.)
Sorry for rambling, but I hope something here helps. If you feel up to it, you could elaborate a bit on what kind of pain you are experiencing, maybe some other kind folks here can give suggestions.
Hope things get better and look up soon!
Hello, I have learned so much about our ss, from the ss foundation located in Bethesda MD. Try the Web site, I am on meds from my rhumy. I am going to be a spokeswoman for them soon, so many don’t know a lot about ss so, they need people like us the bring awareness to the SS. I AM ALSO GETTING APPROVED FOR DISABILITY. NOW YOU CAN SO GO TO THE WEB SITE FOR MORE INFO. FEELING BETTER AND BRIGHTER DAYS FOR US ALL LOVE YA!!!
.
Hi Debb,
I live in Bethesda as well. I have SS and fit the disability rule for SS. Do you know of a good disability lawyer close to us who can help me?
Debb said:
Hello, I have learned so much about our ss, from the ss foundation located in Bethesda MD. Try the Web site, I am on meds from my rhumy. I am going to be a spokeswoman for them soon, so many don't know a lot about ss so, they need people like us the bring awareness to the SS. I AM ALSO GETTING APPROVED FOR DISABILITY. NOW YOU CAN SO GO TO THE WEB SITE FOR MORE INFO. FEELING BETTER AND BRIGHTER DAYS FOR US ALL LOVE YA!!!
.
Wow, I think everything was covered so well by all the members!
I’ve learned a lot
Thanks to all.
MY RA doctor told me to take 2 tylenol every morning. I drink 15 cups of liquid every day and carry a water bottle in my purse and another one in the car. I am always 15 minutes away from complete dryness. When my glands hurt and swell, its like I have the mumps again. Mayo in Rochester diagnosed with Sjogrens (primary) and Rheumatpoid arthritis (secondary) in 2013. Since April 2015 i have been on Presidone. I am 70 and it causes weight gain, tremors, and hot flushes, but it has helped with the pain. My dose gets lowered every month and am down to 4 MG from 15 MG a day. blood test every 6 weeks. My pain is worse and my placelets are going down again. so have been on this level for 2 months. See the RA doctor again next month.
Is there any advantage of getting disability if you can take early social security…
It's so challenging to find help for so many things that Sjogren's causes. That said - One of the sites I visited recommended slippery elm for dry mouth. Lozenges work best. I found Thayers slippery elm lozenges natural cherry flavor. Couldn’t find it in any stores (only the orange flavor - which doesn’t taste good). I ordered it on the internet.Singers use these as well for dry mouth and throat when singing a lot.
I also drink a tea morning and night called “Throat Coat.” It has slippery elm in it and other herbs. I drink it slowly to let it moisten my mouth and tongue, let it moisten the back of my throat, sometimes gargle it and then slowly swallow it. It helps a lot and helps with my GERD which is also something Sjogren's can cause.
Another very helpful thing is to chew sugarless gum with xylitol in it. It stimulates the salivary glands to produce more saliva. (This can actually prevent coughing spasms which, again, Sjogren's can cause.)
I find that water doesn't help me - seems to almost make it worse. I've found that sports drinks (sugarless and can be made with powder packets sometimes called workout water) help much more.
Hope this is helpful.
So sorry for you..............dry mouth is my biggest complaint. Evoxac did not help me at all. I do use Biotene Oral Balance. It is a clear gel that coats the inside of your mouth. It is temporary relief. I always have a water bottle and gum. Can't live without that. Stay away from mouthwash that contains alcohol.
What type of pain are you experiencing?
I’ll have to try those lozenges. Do they only help when they are in your mouth? As with everything I put in my mouth as soon as they are dissolved,instant dry. I hate it. I feel there is not much hope for me as I have so much against me. I’m allergic to a lot of meds now. I’m not a big drinker so it’s hard for me to drink something constantly. And I’m a smoker. Have done everthing in the world to try to quit. I have lived with the Lupus a long time,not always easy. But this Sjogrens dry mouth is worse than anything I’ve ever experienced. Wish I could do some of the tips you’ve told me but some are impossible for me to handle. But will try the lozenges. Thanks all
Did you really find relief with Pilocarpine? I tried for about a week and gave up. Maybe I'll go back on it and stick with it. I'm desperate for dry mouth relief.
Kerrikles said:
As others have said, look into getting pilocarpine. I have found it to help so much. It takes a long time for it to do anything though, you have to take it 4 times a day, every day for 3 months before it takes effect. Be patient though and suddenly one day you will find yourself with a mouthful of saliva and you will want to cry with joy... or at least that was me.
As for pain, what kind of pain are you experiencing?
Below: a really long post, with tips for dealing with all sorts of kinds of pain.
For me, I experience a few kinds. Pain from dry eyes, pain from dry mouth, pain in my salivary glands themselves, and general body pain. I treat these symptomatically.
For dry eyes I use eye drops, over the counter Systane or systane ultra. DO NOT USE VISINE or other cheap eye drops like that. They actually dry out your eyes more!
For dry mouth... I have tried Biotine and that moisture spray stuff. I find they taste awful and the relief is only for a very short time. But I would recommend trying, because everyone is different! And if/when you get worse, try again because you may find that it helps later on. Drink lots of water. Brush your teeth regularly (at least twice a day) with high fluoride toothpaste, and floss, and use a mouthwash without alcohol so it doesn't try you out further.
It is kinda gross, but sometimes when I am super dry I just put a layer of Vaseline in my mouth and in my nose so I can breathe without it drying everything up. Usually I do this when going to sleep at night if I am really dry. But sometimes I do it in the day too if it is just bad.
If it's your salivary glands that are painful, try milking them. I am on my phone so I don't have the link handy, but you can Google "how to milk salivary glands" and you will find it. Be warned, it can hurt, and if you have an infection in your glands it can... make the pus spurt into your mouth. Grossest thing ever, but once I did that I was able to eat for the first time in a month without pain! (Back when I was first diagnosed.)
Also if your salivary glands hurt, warm wet heat is the best. Heating pads are alright. If you have one of those microwavable Magic Bags then those help. Even a washcloth dipped on warm/hot water and held up to your face can bring relief. So can drinking tea. Hopefully you like warm beverages. I find black tea makes me a little drier, so I go more herbal/green with my tea usually, but again that might be something you will have to discover for yourself. Even a glass of warm milk can be nice and relieving. Eating soup can be good. Avoid dry goods like crackers or dry bread.
For full body pain, I don't do much most days. It's there, and I am aware if it, but usually I can function okay. When it gets bad, I take advil or tylenol, or some T3s. A hot bath can help (Epsom salts are supposed to be good), as can a heating pad, or a massage. (I recommend using a nice unscented lotion like Aveeno, since it is soothing but won't irritate your nose if you are sensitive, and it helps hydrate the skin, which can be an issue too.)
Sorry for rambling, but I hope something here helps. If you feel up to it, you could elaborate a bit on what kind of pain you are experiencing, maybe some other kind folks here can give suggestions.
Hope things get better and look up soon!
Beth said:
It's so challenging to find help for so many things that Sjogren's causes. That said - One of the sites I visited recommended slippery elm for dry mouth. Lozenges work best. I found Thayers slippery elm lozenges natural cherry flavor. Couldn’t find it in any stores (only the orange flavor - which doesn’t taste good). I ordered it on the internet.Singers use these as well for dry mouth and throat when singing a lot.
I also drink a tea morning and night called “Throat Coat.” It has slippery elm in it and other herbs. I drink it slowly to let it moisten my mouth and tongue, let it moisten the back of my throat, sometimes gargle it and then slowly swallow it. It helps a lot and helps with my GERD which is also something Sjogren's can cause.
Another very helpful thing is to chew sugarless gum with xylitol in it. It stimulates the salivary glands to produce more saliva. (This can actually prevent coughing spasms which, again, Sjogren's can cause.)
I find that water doesn't help me - seems to almost make it worse. I've found that sports drinks (sugarless and can be made with powder packets sometimes called workout water) help much more.
Hope this is helpful.
I find I need to use the lozenges or chew gum or suck on sugarless fruit/cool mints most of the time. I also run a humidifier all night and off and on during the day. We live in Arizona and it is very, very dry.
Pilocarpine has been helpful for me, especially helping with dry mouth. But I can't use it because I've had some bizarre sweat thing going on for 1 1/2 years now. When I get up in the morning I start sweating on my head and face and it's wet enough to drip off my face and the back of my neck. Like I've been running for a long time and then stopped. So I quit the pilocarpine then - thinking it would help with the sweating, but it didn't really.
Greeneyes said:
Beth said:It's so challenging to find help for so many things that Sjogren's causes. That said - One of the sites I visited recommended slippery elm for dry mouth. Lozenges work best. I found Thayers slippery elm lozenges natural cherry flavor. Couldn’t find it in any stores (only the orange flavor - which doesn’t taste good). I ordered it on the internet.Singers use these as well for dry mouth and throat when singing a lot.
I also drink a tea morning and night called “Throat Coat.” It has slippery elm in it and other herbs. I drink it slowly to let it moisten my mouth and tongue, let it moisten the back of my throat, sometimes gargle it and then slowly swallow it. It helps a lot and helps with my GERD which is also something Sjogren's can cause.
Another very helpful thing is to chew sugarless gum with xylitol in it. It stimulates the salivary glands to produce more saliva. (This can actually prevent coughing spasms which, again, Sjogren's can cause.)
I find that water doesn't help me - seems to almost make it worse. I've found that sports drinks (sugarless and can be made with powder packets sometimes called workout water) help much more.
Hope this is helpful.
Hi,
Have you tried Prevadent a RX toothpaste that could be prescribed by your dentist?
For pain I get accupuncture or PT or chiropractics.
I heard from my opto that there is a new procedure to help with dry eyes that lasts about 2 years. I believe there is a
special machine. It's done at the opto office.
2akitalover
Do you have the link to the website? Or, at least the web address without the link.
Thanks
Debb said:
Hello, I have learned so much about our ss, from the ss foundation located in Bethesda MD. Try the Web site, I am on meds from my rhumy. I am going to be a spokeswoman for them soon, so many don't know a lot about ss so, they need people like us the bring awareness to the SS. I AM ALSO GETTING APPROVED FOR DISABILITY. NOW YOU CAN SO GO TO THE WEB SITE FOR MORE INFO. FEELING BETTER AND BRIGHTER DAYS FOR US ALL LOVE YA!!!
.
Vaseline is not recommended for a nasal moisturiser- apparently it can cause a form of pneumonia from the lipids in it. There are some nasal moisturisers you can get- like a NeilMed one (haven't tried it yet) and also one called Nozoil, made with sesame oil.
Connie said:
Did you really find relief with Pilocarpine? I tried for about a week and gave up. Maybe I'll go back on it and stick with it. I'm desperate for dry mouth relief.
Kerrikles said:As others have said, look into getting pilocarpine. I have found it to help so much. It takes a long time for it to do anything though, you have to take it 4 times a day, every day for 3 months before it takes effect. Be patient though and suddenly one day you will find yourself with a mouthful of saliva and you will want to cry with joy... or at least that was me.
As for pain, what kind of pain are you experiencing?
Below: a really long post, with tips for dealing with all sorts of kinds of pain.
For me, I experience a few kinds. Pain from dry eyes, pain from dry mouth, pain in my salivary glands themselves, and general body pain. I treat these symptomatically.
For dry eyes I use eye drops, over the counter Systane or systane ultra. DO NOT USE VISINE or other cheap eye drops like that. They actually dry out your eyes more!
For dry mouth... I have tried Biotine and that moisture spray stuff. I find they taste awful and the relief is only for a very short time. But I would recommend trying, because everyone is different! And if/when you get worse, try again because you may find that it helps later on. Drink lots of water. Brush your teeth regularly (at least twice a day) with high fluoride toothpaste, and floss, and use a mouthwash without alcohol so it doesn't try you out further.
It is kinda gross, but sometimes when I am super dry I just put a layer of Vaseline in my mouth and in my nose so I can breathe without it drying everything up. Usually I do this when going to sleep at night if I am really dry. But sometimes I do it in the day too if it is just bad.
If it's your salivary glands that are painful, try milking them. I am on my phone so I don't have the link handy, but you can Google "how to milk salivary glands" and you will find it. Be warned, it can hurt, and if you have an infection in your glands it can... make the pus spurt into your mouth. Grossest thing ever, but once I did that I was able to eat for the first time in a month without pain! (Back when I was first diagnosed.)
Also if your salivary glands hurt, warm wet heat is the best. Heating pads are alright. If you have one of those microwavable Magic Bags then those help. Even a washcloth dipped on warm/hot water and held up to your face can bring relief. So can drinking tea. Hopefully you like warm beverages. I find black tea makes me a little drier, so I go more herbal/green with my tea usually, but again that might be something you will have to discover for yourself. Even a glass of warm milk can be nice and relieving. Eating soup can be good. Avoid dry goods like crackers or dry bread.
For full body pain, I don't do much most days. It's there, and I am aware if it, but usually I can function okay. When it gets bad, I take advil or tylenol, or some T3s. A hot bath can help (Epsom salts are supposed to be good), as can a heating pad, or a massage. (I recommend using a nice unscented lotion like Aveeno, since it is soothing but won't irritate your nose if you are sensitive, and it helps hydrate the skin, which can be an issue too.)
Sorry for rambling, but I hope something here helps. If you feel up to it, you could elaborate a bit on what kind of pain you are experiencing, maybe some other kind folks here can give suggestions.
Hope things get better and look up soon!