Sjogrens | Arthritis Information

Hi All.....
I was just diagnosed with Sjogrens. Does anyone else have this and what do you take for it. Geez, what next??!!

Thanks!
I have sjogrens, it started with sore eyes and then an extremely dry mouth. I use a fake saliva which i hate and i eat a lot of water based food (watermelon, lettuce) I also eat a lot of ice lolliesMake sure you get all of your dental needs taken care of. Mine very's from day to day. At the moment prednisone is helping me. Now if they take my prednisone away i don't know what i would do. Because mine gets very bad. To the piont i choke from a dry throat. I am just assuming if you treat the RA it is treating the Sjorgrens at the sametime? I really have had so much else to deal with i have not addressed the Sjorgrens scince the pred has been helping. I will ask RD I see again in three weeks anyway. Sorry you have this.At this time, I do not have a dry mouth, it is just my eyes. I thought that I had conjunctivitis as they burned and blurred my vision and there was bleeding or hemorraging at times. She gave me some Restasis and put little thingies in my eyes. Not sure what they are called. I hope that it all helps. Oh well, it's just another immune system condition.
Thanks milly and pin cushion.

Hi GG, I have Sjogren's too. It has become much worse over the past months. My mouth, nose, eyes and skin are extremely dry.

With mine, the dry mouth was the first thing I noticed. Like Milly said, you really have to be careful if and when you start getting a dry mouth. I wake up so dry that I couldn't spit to save my life

Be very careful of your eyes, too. I also got Restasis recently. It's expensive, even with insurance, but well worth it. I've lost enough, I don't want to lose my eyes, too. See your opthomalogist as often as they say to.

Also use lots of moisturizing lotion.

I don't go anywhere without my water bottle. I get so dry that I can't even talk. It a pain in the butt, but just something that helps.

Good luck! I hope it doesn't get any worse.

Hugs, Nini

this dry eye, mouth and skin stuff is m story too. I am never anywhere without a water bottle. And my skin looks much older than my 50 years.. though not on my face where I always moisturize ...Sjogrens sucks, sucks, sucks! I had it just in my eyes about a year ago and just had the flare of a lifetime...I could not swallow, because I did not have any mucous....I thought I was going to die, and I could even produce a tear when I started crying!

I have all four tear ducts plugged about a year ago and I have just now added Restasis...I think it is helping!

Now my nose is dry as a bone and I have developed sores, and then the mouth dryness and my taste buds dying...I hate it.

Saline washes for the nose, and then I found a product over the counter Biotene...they have a whole line of products to help with dry mouth. Those are really helping and I am glad. I have had cuts and sores in my mouth too...so I hope it never gets this bad for anyone.

I cannot take the fake saliva, b/c I have asthma(reactive airway disease).

I am sorry to hear of your DX of Sjogrens. It never ends, huh? I have sjogren's and take salagen for it and it really seems to help. I chew a lot of sugarless gum and drink lots of water. I've found the fake saliva stuff disgusting....

deb

I too have this. I use the Biotene for the mouth issues. My eyes are the big problem area. I have had the ducts plugged-no big difference there. For the last two years I have been making almost monthly visits to the optho. Keratits, iritis, scleritis-name it, it has happened. Eyes being dry opens them up to all sorts of issues. Things have been better these last two months. We are hoping the Orencia is working.I use OTC eyedrops, ORALBALANCE for dry mouth and Biotene mouthwash a couple times a day and AYR saline gel in my nostrils. I also use "Replens" vaginally due to extreme dryness there. I also use a special toothpaste once a day because the Sjorgrens has caused demineralization.. grrrrrGosh. I think I may have Sjogren's. I started to spit up blood last week and looked in my nose and mouth and they were very red, inflamed and bleeding, I'm also having trouble with my eyes. But my bloods will confirm it, so I'm not going to worry about it until then.

I have a question: Do you guys with Sjogren's find that your fatigue and joint and muscle pain are much worse with the RA? Does anyone have RA, Sjogren's and Fibromyalgia? What is your quality of life? _popupControl(); I have fibro, ra, sjogren's, and a few others thrown in for good measure. I don't know if my muscle, joint pain, and fatigue are worse because of it. worse than what? Worse than someone else without all the extras? I think it is impossible to compare one person's paiin with another because we all interpret it differently and have different tolerances. I refuse to let it stop me, so I try to do what needs doing. Occasionally, ok usually, I end up over-doing it and pay for it later in the day... It's a choice I make because I need distraction from the pain and fatigue otherwise I would never get out of bed. Everyone is different though...^ LOL! I in no way meant to get in a discussion about comparing pain between other people! I meant pain between diseases/illnesses.

I guess it is hard if you can't distinguish between the kinds of pain that each illness and disease causes, or if you were diagnosed with several things at once, but I find that I can distinguish between fibro and RA pain because I was dx with fibro first and spent a while really understanding and knowing how it effects me, and I know when the other one is antagonizing the other one, and vice versa. So I was just wondering for those people who do have all three if they noticed a significant difference in that area when another 'friend' comes along to play?
_popupControl(); Thanks for all of the responses. It has given me a heads up about all of the things that are available if needed.
If there was a miracle drug to treat the immune system, we would be free of all of this bull----.
Enjoy your weekend!
Huggin ya~~~~~~
I gave up a long time ago on trying to figure out if it is fibro, RA or sjogren's. All I know is that it hurts and I try ot go on with my day and I have more physical restricitons now it seems.......maybe it is just plain depression........maybe I am getting worse.

I keep my sanity by with all this by remembering what I used to be able to do........maybe that is wrong....

Hmmm prob not the right material for this post....sorry

Anyway, some days are worse. Lately my eyes are so dry they get hurt and are stuck.

GG et al,

I was diagnosed with Sjogren's about 2 years after the RA dx. I use Evoxac twice a day...it's a caplet and works pretty well. This winter something new was added...nose bleeds. Not normal nosebleeds. Just sores and blood from my nasal passages. I've been to the ENT docs a couple of times. They think the SS and dry winter air contributes to this problem. So I use AYR, a saline spray, several times a day. It seems to be helping. I didn't use Evoxac before bed (it's an oral med) and this AM my mouth was so dry. So I know it does help. I use Plaquenil and I think it helps the SS. along with a bunch of stuff. Had one tear duct blocked by the eye doc with a little plug that has remained in place for over 5 years now. I don't use eye drops, but I probably should. The worst is the dryness in the mouth and nose and ..um..other places.