View Full Version : Sjogrens Too
10-11-2005, 12:06 PM
Hi Everyone--A couple of weeks ago I posted about all the neck pain and problems I`ve been having and a couple of you mentioned Sjogren`s Syndrome.After my gp ran a ct scan and found nothing he also suspected Sjogrens and yesterday my rheumy confirmed it.He started me on plaquenil.This is just great---2 auto-immune diseases instead of one.
Does anyone else have Sjogrens plus lupus? My rheumy says they`re kissing cousins.And how do you tell when its lupus or sjogrens flaring up?I don`t know much about Sjogrens.
10-11-2005, 04:29 PM
Sjogrens is often linked with lupus. I tend to a bit of dry eye, but not to the level of sjogrens,at least not yet. The plaquenil should help you - it is what I take for lupus and can be very effective.
I also got a list of eyedrops without preservatives from an opthalmologist that help me figure out which one to buy over the counter, as I said mine is mild. The one I use is advertised as "for mild or moderate dry eye," and some days I use it like crazy, other days not at all. For the other issues - dry mouth, etc, listen to yoru doc and be sure you're taking in enough liquid.
As far as which is flaring? It may not matter - a flare means you need to see your doc, let him or her figure it out!
10-13-2005, 07:29 AM
I also have both. And like hatlady, suffer mostly from dry eye. i'm not too well versed on sjorgens either, but a flare is usually the same, so i dont even pay attention to what it could be. I am also now in Plaquenil, and although i cant say i've seen much improvement (on it for 9 weeks now) the rheumy did say that it should help both. I know that in previous posts SaySusie has given some great info on sjorgens. To be honest, with Lupus (for me) it's like having 27 maladies in one, so one more in the pile doenst really make much of a difference. They are usually very similar, with fatigue and achy joints. Good luck! and hang in there
10-19-2005, 01:25 PM
I too have lupus and last year started cellcept. Then got this horrible feeling in my mouth. Weeks later the dr said it was probably a bit of sjo. showing up since I was in a flare. he said that'll happen a lot when you're flaring and call him sooner next time and we'll try to solve it sooner and without a lot of discomfort. I now take salegen (sp?) for it and like the pp said take in lots of water (plus the water helps with loosing the prednisone weight). Sorry, I tried plaquenil years ago and it eventually stopped working for me so now i do the cellcept. Like someone said I take so much med now whats another to add to the mix, at least as long as it helps I don't care if I am on 15 RX at once!! We'll work on the Rx lowering once I feel better. Best of luck!
10-23-2005, 07:41 PM
I too have Lupus and sjogens. I suffer from an extremely dry mouth and very gritty (like sand) eyes. The thirst is unreal. I always have a drink in my hand and my mouth is still dry and my toungue stays so sore. One of the bad things is that I have gotten a lot of cavities. With in one year I got 6 new cavities. Be careful and see your dentist often. Make sure the dentist is aware of your medical history. My dr told me about some over the counter meds I could try and gave me a script for a pill that make your mouth water like Niagra Falls. I will list the meds below so you can ask your Dr about them. I am not sure about any other symptoms that are associated with this but you should also know that fibromalga is also another kissing cousin to Lupus.
OTC mouth wash that will not burn a sensitive mouth is called
There is also another tube(like a small toothpaste) that is a oderless tasteless gel that really gets your mouth wet. Sorry I can't locate mine right now to give you the name.. It is right next to the mouthwash at the pharmacy though.
Script that starts the waterfall in your mouth is called Evoxac, it also helps the other membranes that may be dry also.
Hope this helps some...
I'm new here. I was browsing Lupus forums and saw this topic and had to put in my two cents.
I was diagnosed with Lupus in February of 2000. At this time I also have been diagnosed with Fibromyalgia, Reynaud's, RA, Degenerative Joint Disease, Degenerative Muscle Disease, Sjogren's and a partridge in a pear tree. :)
My Sjogren's is often the first sign of an oncoming Lupus flare. I get completely dry in every mucous membrane of my body ~ including places you never thought of as mucous membranes. :lol:
I have found that GenTeal eyedrops work for mild to moderate dry eyes, but I have to use the GenTeal Gel drops for severe cases. Also, the only thing I have found that soothes my dry mouth is water - lots & lots of water. I also use saline nasal drops for my nose. KY is about the only solution I have found for the other areas. :oops:
I hope some of this information has helped.
11-03-2005, 10:52 AM
I have had lupus for about 17yrs, maybe before that. I have sjo also and the fibro thing. I did not know about sjo until my Grandmother died. Her Dr said we needed to be tested. At that time I only had lupus. I really did not care because I felt great at that time. Now over the years things are not so great. I am running on empty. It is very important to see a dentist, my teeth are falling out or decay quickly. My skin is very dry and needs alot of moisturizer. Smoking dries the body out also. My hair is falling out at the moment but I have experienced that before and it grew back. My Mother has tested positive for lupus but is not experiencing problems. She has some aches and pains but the disease must have skipped over her.
Just slow down and take care of yourself. A car needs maintainance and gas to run right. If you dont take care of the car it wont run! Oh yes! take the plaquenil! It doesnt seem like it is doing anything but it is. It helps prevent future damage. It takes a while for results. Be patient. I was not a believer but now I am.