Dry nose and other questions

Can anyone please suggest something that will help for a painfully dry nose?? No Ayr…it doesn’t help! I’ve tried coconut oil but it dries fast. I’m also trying vitamin E oil up there. Also, has your dryness gotten worse, better, or stayed the same since the onset of your disease? Is there anyone who feels they are living the same quality of life they did pre-SS? Or close to it? If so, what are you doing? Also, have anyone’s symptoms gotten better in general than earlier on in their disease? I’ve heard some inspiring stories and I’m hopeful but I can’t figure out what those people are doing…or are they just lucky? Is there a way to prevent secondary diseases or organ issues; or again, is it just luck? Thank you, Casey

Hi Casey,

The first thing I do is to use water, and then use coconut oil, or olive oil, if there are any sores, I use Neosporin, but I always use the water first, I just lightly snort it.

I also use water for my eyes sometimes, as the eye drops make you feel like your eyes are full of Elmer's glue after a while.

I know that things like fans A/C, heat, wind, can dry me out quicker, and I seriously doubt that anyone here is as well as they were pre-Sjogren's, and if there are, I have a lot of questions for them!

I'm not sure if they have determined if the Biologics or DMARDS will prevent organ damage, that is one for the Doc!

Hope you can get to a better place, Casey, just remember if someone tells you they're cured or miraculously better and it is not from an AMA med, get ready for the sales pitch for the 'miracle supplement', the one they will charge your checking account or credit card every month for and you will spend the rest of your life trying to discontinue those payments!

I have had so many medical problems over the years and didn't know what was causing them. Anything from detached retinas, herniated discs, joint pain, bone pain, heart issues, and on and on. Finally I was diagnosed with Stickler Syndrome, fibromyalgia and now Sjogrens. On looking back, I realize I had most of these problems since I was a late teen. All of my "stuff" seems to come and go. There are what I call remissions, where I feel almost normal. I can do things around the house, take walks, go on vacation and not take any medications at all. Then there are the flare ups. That is when everything seems to act up all at once out of the blue. The only three things I feel cause my flare ups are severe stress, not enough sleep and any type of allergic reaction.(bee sting, exposure to fumes, smoke, lots of perfumes) I have had times when I was at the doctor all the time. I tried all their ideas and medicines and had side effects to most of the meds. I felt no better and actually got worse from the stress of the appts and my empty wallet and worries about the new meds. Now I take thyroid medicine and vitamins and deal with the pain with an occasional muscle relaxer. It is not the answer for most people, but I just got sick of the routine, I call it the guinea pig routine. The doctors often mean well, but they don't have all the answers. They try and guess what to do, but we suffer the consequences if they guess wrong. I try to look for the good in each day and thrive when I am having good times, often lasting a couple of years. The in between times are hard, but that is when I write my poetry, do easier household chores and check out travel books for the good days to come. I never know how long until the remission comes, but so far, it always has. I hope that just knowing you are not alone in this suffering will help some. Take care, rest a lot, let others help out when you need it and don't feel guilty. You get to decide when and if you check out another doctor or have another procedure. Only you know how much you can take.

I can offer a little input.

It could be that symptoms vary...better and worse...but I do believe I have noticed that my dry eyes and dry nose are a little better since changing my diet. Just had my blood work done and the SS is clearly there and now my Lupus tests are all positive. So, oddly, I'm not technically doing all that well. However, my dryness has been a bit better. I'm strict about my diet: no sugar, no flour/pasta, moderate amount of meat, moderate amount of fruit (and try to not eat it with other things), little to no dairy, no junk, no alcohol, lots of good water, limited coffee and limited fake sugar. Now, I'm thinking of getting rid of fake sugar.

Also, we travel to see our grandson often. It is about a four hour drive. I didn't realize that this causes dryness....being in the car for a long time. So, I'm more aware of it. If I'm going to be in the car for longer than an hour, I spray my nose before getting in the car and then perhaps thirty minutes into the ride. I also use my preservative free eye drops.

So...perhaps since your dryness seems worse, you might use a spray or a gel much more often, especially if you are going to be in the car and/or air-conditioning.

Can't help you with products as I mostly use the Ayr sprays and gel.

One more thing, we bought an air purifier for the bedroom and I think this is the best thing in the world It is called the Austin Air Purifier. I think it helps all around. And they offer an extra filter to get rid of VOCs ...the chemicals that off gas from furniture, rugs, etc. It's an all around top notch, superior air purifier (I don't work for them...its just that I have bought many and this one made a noticeable difference)


I'm glad you asked this question, because I've been searching for something for my dry nose and sinuses myself. I use a neti pot but sometimes feel like I'm drowning in the ocean. I also do the old-fashioned towel-over-your-head-while-the-hot-water-runs "steaming".

I never thought of coconut oil but think I will try it. Someone suggested Vaseline to me the other day, and when I couldn't find it in my medicine cabinet I decided to rub Vicks Vapor rub under my nose and somehow those menthol fumes seemed to give me some relief.

As to the pre and post SS? Even though mine was caught as early as possible (I knew I had the antibodies for at least 4 years before the true symptoms hit) new problems and complications still continue to appear now five months later. I thank God I didn't spend years undiagnosed, but catching it early has not stopped the cascade of events, and it seems that a new complication appears every time I turn around. It may not sound like the most positive thinking, but I've resigned myself to the fact that my quality of life will never be the same again.


using "Simply Saline" a nose spray about 5x day helps some