Just wondering what everyone is doing to combat this.
I chew sugarless gum, and drink a lot of sparkling water. Regular water doesn’t cut it, I need that fiz. I get the flavored water, no sugar. Just fiz and natural flavor.
I also have dry nostrils, and bloody noses? Any ideas.
I have to have my sugarless lemon cough drops; although I have to be careful not to chew them and let them dissolve. Also, I like xylitol gum from while Foods and Dentyne in the green wrapper. I use xylitol x clear nasal spray almost daily and RX Flonase when I am congested. before long car rides I use all this stuff and non preservative eye drops too…then do it all again an hour or so later if I’m still in the car. Plus I drink water all day long.
Someone else with SS suggested KY for the nostrils and it’s been a huge help for me. Ayr gel doesn’t help. I also break open vitamins E capsules and swab that in my nose.
My nose bleeds are caused by dry membranes. The Neilmed nose irrigation system cleans out my sinuses (which drip all the time)--can get in any drugstore. At Costco you can buy enough to last a lifetime. It moistens the membranes. I use vaseline to keep my nose membranes moist.
The xylitol candy gives me gas and it doesn't last--would have to eat a whole bag. So, I toss a couple sugar-free Dentyne Ice chiclets around in my mouth. My doc has prescribed Salegen (gen: piclocarpine): one tab 5 times per day. Curiously, it helps with my eye tear production too. I'm sure the doc wouldn't believe this. I still have to have something in my mouth at all times to keep the "juice" flowing (gum chiclets) even with the pilocarpine.
You got to hold on.
I use that Neilmed irrigation when I have very dry nose or the slightest indication of trouble. I love it!
I've been using Arm and Hammer's Simply Saline for my nose and have recently gotten relief from Xylimelts for dry mouth. I've found they are much better than the Oramoist discs. I can stick two of these on my gums before I go to bed and they last a good four or five hours.
I always try to make sure my lips are moistened too and apply Blistex Lip Medex many times a day - something about the slightly menthol-like tingle helps with saliva too.
Or. . . you can try the tip from my jin shin jyutsu I posted earlier!
Liz
I cannot be without sugarless gum or water. I take pilocarpine, although it doesn't help much. to me nothing is as bad as the dry mouth. My nose is always stuffed. Especially in the morning. I think I have a sinus infection, but maybe it is just another symptom of SS. Cause I have this constantly.
How many pilocarpine tabs do you take a day. Just curious. My doc started me out on 3 and then 4 which didn't work. On five times a day it worked.
Connie said:
I cannot be without sugarless gum or water. I take pilocarpine, although it doesn't help much. to me nothing is as bad as the dry mouth. My nose is always stuffed. Especially in the morning. I think I have a sinus infection, but maybe it is just another symptom of SS. Cause I have this constantly.
I use Ocean nasal spray.
I do get some kind of creepy feeling every so often and get hot. No sweats tho. It could be from the pilocarpine.
Tez_20 said:
Hi USAgurl,
I hope your keeping ok as we've not spoken in a while...i'm on pilocarpine 3 times a day and that's enough they help my eyes abit besides constant eye drops but I don't know if your like me but I get hot sweats from them.
Higher amounts can sometimes be for Glaucoma...so it's always best to make sure where that's concerned.
USAgurl said:How many pilocarpine tabs do you take a day. Just curious. My doc started me out on 3 and then 4 which didn't work. On five times a day it worked.
Connie said:I cannot be without sugarless gum or water. I take pilocarpine, although it doesn't help much. to me nothing is as bad as the dry mouth. My nose is always stuffed. Especially in the morning. I think I have a sinus infection, but maybe it is just another symptom of SS. Cause I have this constantly.
Restasis 2xday
Refresh Optive drops during the day, Refresh PM sensitive at night
Month ago had lower plugs put in by eye doc - so far so good
Cevimeline (Evoxac) 3xday
NeilMed NetiPot Sinus wash at1-2 times daily - ***this works best for me
Hydroxychloroquine (Plaquenil)
Cool mist room humidifier (in winter)
Water - sip swish swallow throughout the day, Do mix a splash of tart unfiltered cherry juice at least once a day for teh potassium balance
Xylimelts
Have tried:Ocean Spray (saline) which made my nose worse.
Have tried GeloNasal (some "non-med" made in Germany sold by my FORMER ENT) - allergic to ingredients
Have tried NeilMed Nasogel - made my nose worse.
Have tried Rx nasal steroids - did not do well at all. Did well for inflammation but had adverse reactions consistently.
Thank You for all the wonderful tips. I tried the vaseline in the nostrils and it helped a lot.
Vaseline also worked really well for my lips. I got Carmex healing cream for my hands and it works really well.
Rather than vaseline, which does soften and help with dryness, but is rather thick, I use organic coconut oil in my nose. I also hold it in my mouth before I got to bed, swish a bit, then swallow (good for hair, skin, blah, blah, blah). It seems to help a lot and seems to stay longer than I was expecting. I have a prescription for Pilocarpine for mouth dryiness, and sometimes I use it, but Mucinex 12 works even better, I think. For vaginal dryness, I use vegetable oil as per my Gyn's instructions....use as lubricant, too, sorry if this is TMI. Studies (yes, I doubled checked) indicate that it is better than other products, and I will vouch for that. I use Lotemax to deal with eye irritation and redness, as needed, and I use ointment in my eyes at night and sometimes, a much smaller amount, partway through my day since I am at home more. It doesn't blur my vision that long. I also have preservative free drops and plugs in my eyes.
I will try the coconut oil. Thank you for all the tips.
I use wen for my hair, its expensive but helps alot. Also Paul Mitchells gloss drops for the hair....is the best!
I got some massage oil for my body to hydrate, and it helps too. so far Vaseline has been helping a lot with my psoriasis too.
Thanks to the person who suggested Vaseline.
Veggie oil.....that is interesting. LOL I will be cooked lol Anything is worth a try.
Coconut oil is also good for cooking, dogs, and just about everything else.
You got to hold on.
Personally, I love vaseline. I have used it a lot in the past. However, I have been warned away from it for things, but that does not mean that I don't break it out now ant then.
Tez_20 said:
Country girl,I suffer bad with dry skin and psoriasis, half the time I don't know if i'm human or reptile lol
For my face I use Niva for dry skin but have to wipe my face first with non perfumed baby wipes so that the nivea soaks in and for my body Coconut butter by Palmer's.
I will say this though....sjogren's is one heavy weight to the purse.
Country girl said:I will try the coconut oil. Thank you for all the tips.
I use wen for my hair, its expensive but helps alot. Also Paul Mitchells gloss drops for the hair....is the best!
I got some massage oil for my body to hydrate, and it helps too. so far Vaseline has been helping a lot with my psoriasis too.
Thanks to the person who suggested Vaseline.
Veggie oil.....that is interesting. LOL I will be cooked lol Anything is worth a try.
Hmmm, I would never have thought KY for the nostrils, but that actually doesn't sound like a bad idea! I will have to try it. However, I will make sure not to buy the Warming KY....could just see the results of that!
Casey said:
Someone else with SS suggested KY for the nostrils and it's been a huge help for me. Ayr gel doesn't help. I also break open vitamins E capsules and swab that in my nose.
I also use Afrin 12 Hour Moisturizing nasal spray for occasional stuffed nose. I am making note of all the suggestions on here. Some things I have tried really work, but I wouldn't mind seeing if some other things are not better.
I agree about the sugarless candies. I prefer the sugarless cinnamon candies, but I have noticed that I have to watch that they don't tear up my mouth by my moving them around in there. It's that way with any sugarless hard candy.
I have always wanted to use Wen, but I didn't know where to get it or really much about it.