I don't seem to have any trouble with my eyes at this point except that I seem to be having more trouble focusing when I get tired like I haven't before. Probalby just old age lol. Once in a while I get a pain in my eye, like somone has just stabbed it with a pin, just lasts a couple of senconds then its gone
I don't know, just wondering if it might be Sjogrens? I have an appt with my Rheumy in about a month, so I will ask her then. How does anyone who has Sjogrens keep your mouth from being sooo dry it is glued together. They say to chew sugarfree gum or suck on sugarfree lollies, but they all have sorbitol and that sets off my IBS. Any other ideas?
Hi Pam..I have had Sjogrens for about a year now and I have tried everything to stop the dry mouth, drinking actually makes it worse for me so i keep ice pops handy to suck. None of the fake salivas make any difference. I do use a mouth wash ( biotene) and chew sugarless gum but i live on 2 to 3 ice berg lettuces a day, its the only thing that has helped me..lol. Please watch your teeth as mine have taken a turn for the worse. I see my dentist every couple of months but the dryness has really done its damage. I also get the gagging...even trying to brush my teeth makes me gag. Lettuce is the only things i can say that has really helped. I need to try the lettuce..
when I wake up the dry mouth is so bad I feel like I can't breathe.. even trying to rinse with Biotene is hard.
this just sucks..pun intended.
I agree that it sounds like Sjogren's. The Biotene mouthwash the Pin (Lisa) mentioned is helpful. There is a new one that has a plaque loosening agent in it, too. Helpful for the problems that dry mouth create with your teeth.
To help with the dental problems, I use an electric toothbrush twice a day. Be sure to floss, too. It can be so hard on your teeth, that you must really take extra precautions. Just had my dental check up & cleaning yesterday, and my diligence has paid off this time.
I think the worst is when your tongue sticks to the roof of your mouth and lips stick to your teeth. I carry a bottle of water all the time, or no one understands what I'm trying to say.
Be sure to ask your rheumy to check you for Sjogren's. It might be suggested that you get your eyes checked by an opthalmalogist, too. I currently use Restasis drops twice a day. You still need artificial tears, but the Restasis is supposed to help keep the damage down.
Good luck!
Hugs, Nini
I have had sjogrens for years and this past year has been very problematic. For dry mouth, my dental hygienist suggested gum w/xylitol. I see her every 6 months and use an electric toothbrush to better control plaque buildup. For toothpaste, don't use one with a lot of stuff, like whitening etc, it can be irritating.
For dry eyes, I use genteal products, it has a preservative that dissipates when applied to the eye. See an opthalmologist regularly, perhaps once a year, as there are other RA related conditions that affect one's eyes. I've been dealing with a bout of scleritis. I thought the redness and pain was due to the sjogren's, but it was another autoimmune condition -- inflammation of the sclera, the white part of the eye, which I'm treating with prednisolone eye drops.
I use some mouth spray at night. Oasis I think it's called. I put a few squirts in my mouth and try not to swallow right off and it helps me some. Mine is the worst at night and drinking doesn't really help it. The spray at least helps my gums not to stick to my teeth which has started to drive me in sane!those floss picks are fantastic if you have not tried them very easy to use. i actually find flossing with them a stress reliever. o'k i am weird. Thanks for all the advice guys. I guess this is just one more step in the journey of RA that I must take. I'll try a little bit of everything and see how I go, who knows I might hit on a combo that works. I might just wander out and get me a lettuce........another SS sufferer!
Just went to the dentist today and he said I'm doing pretty good w/ the teeth.. he said he saw no visible damage.. (took xrays) and said that the electric toothbrush I bought and the water pik are very good.. he said some toothpaste to use but it's on a paper I left at the office...
My eyes are the worst of all my symptoms... I use restasis.. and another drop recommended by the Opthamologist.. and the GenTeal talkeda bout above.. using the salve-like product at bed time..
I bought an electric oral B tooth brush but i find it hard to hold because of my hands, the vibration from it makes me drop it so i rely on barry to help me which cant result in some hilarious tooth brushing....As for the salad, I buy the bag of crunchy mix too, which has ice berg lettuce, white cabbage and carrot...all these hold water so its probably why is help without actually drinking....Im on a bag now for my breakfast but beware the mixed bag can play havoc with your stomach after 4 bags in one day..lolMy father was introduced to a product in MD Anderson while receiving radiation for throat cancer, he was diagnosed with Oral Mucositis which is common to find out from the radiation to his neck. The product was a daily mouth wash and a dry mouth spray. The problem was is the product wasnt available in local or national pharmacies. I have done research and contacted the pharmacy internaly at MD Anderson to get info on this product. Its called Medactive Oral Pharmaceuticals and its made by BHM Labs. I contacted them at 866-887-4867 they sell exclusively to large institutions across the U.S. I was able to order these two products for my father and he swears by them, I myself am now taking the rinse for my dry mouth from Diabetes. The spray and rinse worked better then Biotene, Oasis and Thayers that I bought for my dad. I wasted over buying Biotene, Thayers and Oasis only to be told of the horrible taste it left in his mouth. Sjogren's here, too. Besides the miserable dry mouth, I too get the shooting pains in the eye, and I also get sores/cracks in the corners of my mouth. I use a lip balm with aloe vera sold by Crabtree & Evelyn which helps somewhat with that.Please listen and see your dentist now!!! It takes an instant for me to get a serious dental problem. Sorry your having this problem. I don't do sugarless candy, allergic. I suck on peperment candies. Oh well. When my eyes get dry they do hurt. I believe that was my first complaint that my eyes hurt. Actually my throat would get so dry i thought i would choke to death if i fell asleep. I took some high dose prednisone and it helped me threw the very worst times. Well somedays are worse than others. I used to eat cups of onions to try to make a tear. But i think i went three months and had maybe one or two tears total it didn't seem like the artificial tears help when you are this dry. I don't have any damage in my eyes so the doc won't put me on Restasis yet? So i have artificial tears without preservatives. preservatives dry out your eyes. When you are at zero moisture that dose not work. Do not take any antihystamines or meds that dry you out if you can avoid it. Not until you get some relief anyway. If it gets any worse while you are waiting on your appointment call your doctor. Wow you guys. I had no idea Sjogren's was so miserable. I'm sorry you all got stuck with it. Does anybody have dry sinuses? I swear I have an issue with lack of mucus, and now one side of my sinus swells every night and wakes me up because I can only breathe out of one nostril! I'm tired of waking up at 5 am every day! I have started the ultra dry throat thing too...argh.Milly, I wonder why your doctor won't prescribe Restasis for you. Is he a rheumatologist? The Restasis drops are supposed to protect your eyes and keep you from having damage, or help if already damaged. You really should get on it.
Of course, you are pretty much at your doc's mercy, but I would talk to him again and see if you can get him to rx it for you.
I know that some of our members are on Restasis, and I'd like to find out what they think about your doc not ordering it for you because you have no damage yet. It seems to me it would be like not getting on a biologic til your joints are damaged!
Just my opinion. I'd like to hear from others about it.
Good Luck, Milly
Hugs, Nini
Yes i have dry sinuses thats why i am always sick. There are different degrees as to how bad you can get with Sjorgrens. You can also get dry bronchiols and get chest infections easily.Dry sinuses? oh yeah.. they bleed constantly..
I just got a DX from RD that is Salagen.. It's a treatment for the Sjogrens' I havent' tried it yet.. I'll do it this weekend because I dont' want to be in work w/ any issues from it...
How freaky is this? It's made from the same chemical as tear gas!! Makes sense though now doesn't it? As it is, I hope it works cause I am dry everywhere!!! eyes, nose, mouth, skin, ears, on and on....
Yes i agree it is confusing about the Restasis. I guess the deal is that Restasis can be potentially harmful to the eyes, so you have to have a certain amount of damage before they can justify prescibing it. This is what the eye doctor said. So yes it stinks i can not prevent eye damage until i get some. I am not so pleased with that answer either but it is what it is. And the no preservative eye drops are better. But that scares me. I would be afraid of infection. I would rather have Restasis.
Milly... go to an opthamalogist.. they will prescribe the Restasis... and it's a preventative.. so you don't have to have destruction to get it..
And.. FYI.. don't use eye drops w/ preservatives.. there are prescription ones that have none or OTC ones that have very little.. and there's another brand (I cannot remember) that has preservatives but it evaporates?? nto sure.
I have sjogrens too. For dry eyes, my opthamalogist recommended the brand "Genteal." It has a preservative, BUT, it dissipates when put into the eye. Thank goodness, cuz I can't use those single dose, bitty vial type of preservative free eye drops -- arthritic fingers. The Genteal eye drops come in a bigger bottle (still small though) and is easier for me to apply. I was amazed at the selection -- eye drops for mild, medium or severe dryness, and there is also a gel and an ointment for nighttime use.
I may talk to my eye doc about restasis once this dang scleritis (eye inflammation) clears up. I think restasis may take a while (a few months?) to take effect, and it may not work for everyone.
I think folks w/sjogrens should get an eye exam every year -- and be sure you have a good eye doc -- my "former" eye doc misdiagnosed my scleritis and I was in paaaiiiiinnnn, until my new eye doc diagnosed scleritis and put me on prednisolone eye drops.
Yes the vials are hard to use. I poke myself in the eye with them. Doc said i could use the night time gel in the day. yes! Genteal is the brand I was thinking of..
and Milly.. that's a double edge sword.... you cant have it til you are beyond needing it...
sorry.. but glad you have no damage.
babs- Is the script you're talking about supposed to help the dry sinuses? I can't find any info online about dry sinuses, only eyes and mouth. I really hope I don't get the dry eyes.
Milly-I try to avoid crowds this time of year, so hopefully I'll avoid most illnesses. I do seem to sneeze so much more because there is no mucus to help trap irritants. The mornings are especially fun!
Well my doctor thinks that Nasonex can help keep my sinuses moist. Maybe it helps a little bit. I actually had ulcerations in my sinuses. I am seeing ears nose and throat doctor tommorrow. Let you know if he has any better advise.WOW... I never realized it made your mouth dry. I always thought it just made your eyes dry. I'm so sorry you guys are having to experience this. It sounds absolutely miserable.thanks milly-I have tried saline spray-it only helps a little.Yes.. the med is made from a chemical used for tear gas..... what does tear gas do? it' makes you cry and sneeze w/ the fluids...
So, it is supposed to help w/ that.. and the mouth.. IDK if it helps all places we get dry though..and I've read on a sjogrens forum that some are helped w/ only one thing -- such as eyes -- and nothing else...
My eyes are bad...
and my nasal passages as yours are Milly an TheLa... are blood sore.. crusted and bad.. I have saline spray and a saline ointment.. both help but not greatly...
[QUOTE=CO_Mel]WOW... I never realized it made your mouth dry. I always thought it just made your eyes dry. I'm so sorry you guys are having to experience this. It sounds absolutely miserable.[/QUOTE]
not to be TMI.. but It can be responsible for drying out EVERYTHING.. even involving lungs and other organs........ not a pretty thing at all.
Ewww! That is TMI!
My GP thinks I need to get on high dose vitamin D. It's in the lowish range, and he's convinced it would help with all of the autoimmune issues including the sjogrens and raynauds. I don't know. I'm willing to try, but I saw something about leg cramps...
Well ENT says the usual. Humidifier for moisture. Alegra on days that my nose is running only. If dry skip it. Which would be most of the time. Said I have a very bad sinus infection. Keflex 500 mg four times daily. See him again in seven days. Says he is going to get rid of this sinus infection. I wish him luck. He is being agressive. He said heating pad on my jaw. I like to put hot rags on my sinuses. Always when i take a hot bath i lay back with hot rags on my face. I know my nose has been bleeding alot lately. Maybe he will have more to say next week. My ears were not bothering me so much. So thats o.k , they will flare up sooner or later no hurry of course. Maybe if i can get rid of this sinus thing my ears won't be as much trouble. He said that people with Sjorgren's take a long time to get rid of the sinus infection sometimes. I guess i just finished 30 days of Cipro for tooth abcess and earache. Now Keflex. I do really like this doc. He is really nice. I still like my GP but i thought i would take some of the pressure off of him for a bit. So Tuesday I see the foot doctor. Then Ortho Wednesday, ENT again Friday. Did my MRI's last night. Both knees and right shoulder. So i am excited to see the Ortho Wwdnesday.
Copyright ArthritisInsight.com