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ritzbit
09-25-2011, 10:36 AM
Sooo I've been trying to do my homework lately on sjogrens and plan on having a talk with my rheum when I see her at the beginning of October. I wasn't officially diagnosed with it but at one of my very first appointments she told me that I needed to be monitored for it and wrote a note out to my eye doctor and dentist about it. I've been having lots of bothersom but not terrible problems lately especially with my mouth. I was reading online that there are tests that my dentist should have done and never did. What the heck? At the time I was so ignorant to all of this stuff I just assumed at my regular check up he was looking more carefully or something. Well now my teeth are yellow and I have gotten 2 cavaties both since the time my rheum said to check for sjogrens (these are the only 2 cavaties I've ever gotten). I've been having other problems also that I'm not going to talk about. I've asked Marla about this and I feel like I'm doing all I can but I feel like nothing is getting better with any of it. I was wondering if anyone else has some sjogrens advice?

Gizmo
09-25-2011, 10:54 AM
I was diagnosed with Sjogrens back when I got my lupus dx, but my rheumy just did it based on how dry my eyes and mouth are. My eye doctor did a "dry eye" test, which showed I don't make much in the way of tears, and I had punctal plugs put in. One fell out years ago, the other is still in.

Biotene makes mouthwash, toothpaste and even a gel you can put in your mouth during the day that kind is simulates saliva. It is supposed to help with cavities and gingivitis, but I still have both. My dentist gave me flouride gel to put in custom made thingies (brain freeze) that go around my teeth. I am supposed to wear them for 10 minutes every night. My dentist has never done any test for Sjogrens, and keeps forgetting I have it ... argg

ritzbit
09-25-2011, 11:02 AM
I use Biotene and it does about nothing for me. They just gave me a new mouth wash and toothpaste to try and I notice that my mouth seems better right after I use it but then within an hour or two feels all dry and sticky again. Its aggravating. My eyes are dry also but not as bad. The Shimer (or whatever its called) test never shows much of anything. It makes my eyes hurt so bad and they tear up bad like if something scratched your eye. When he does the test with the yellow dye he has seen some inflammation before but not much. Its just bad enough that I had to stop wearing my contacts last year and I talked to him about trying to get back into them a few months ago and he said I would need something like Restasis, but thats really expensive and not covered under insurance. I feel like in the past few weeks my whole body has been drying out its weird. I've even been getting really bad dry skin which I havent had in years. Im wondering if its the cause of some weirdo rashes I've been getting because I never get rashes.

Can sjogrens flare without your lupus flaring? Like could my numbers in my blood work all be elevated from one and not the other? Because back in the middle of August my rheum said my blood work showed active inflammation or disease activity or something like that but I havent felt sick like I do when my lupus flares. Could it be the sjogrens and not the lupus?

Gizmo
09-25-2011, 03:15 PM
I actually know very little about Sjogrens, Ritz. Guess it's mostly a minor annoyance for me, since I don't have the Reynauds like you and so many others do. Biggest problems is keeping my teeth. :wacko:

ritzbit
09-27-2011, 09:13 AM
Anyone know how Sjogrens relates to the skin?

Corella
09-29-2011, 06:27 AM
My recent bloods came back 'negative' for lupus and sjogrens and my ANA went back to normal. However my dry eyes, mouth, nose and everything else have become unbearable, my bones click and crunch at the joints, I am in so much pain and it stings my airways to breath and my sinuses are bad - everything is thick, dry and horrible.

I saw an eye specialist this week at the hospital who didnt even need to do a tear test, he was horrified at my eyes and said I have zero tear production, he is putting in plugs in a couple of weeks, or perhaps tomorrow as the drops are only giving me 15 minutes relief.

The first thing he said when he saw how dry my lips and mouth and eyes were, was 'I know your bloods are negative but I think you have Sjogrens, I have seen people have it and have negative bloods which over the years have become positive, although your rheumy doesnt think you have it, I do'

I was so relieved someone told me something but my rheumy thinks my tiredness is down to sleep deprivation and snoring! My husband said I dont snore, so now I feel very very lonely and isolated - my GP believes me, my eye specialist is convinced he knows what it is, but the rheumy is going only on the bloods.

No matter what I drink, no matter how much - I am dry, dry, sore tired and in pain.

I am looking forward to getting the plugs though, doctor said if they fall out they can cauterize them into your eyes which sounds painful.

How has everyone else got on with the plugs?

leaann
09-29-2011, 06:58 AM
I don't know very much about Sjogrens but I have felt for years that I have had this, I have lost all most all of my teeth, was told years ago that it was due to reflux but I am thinking different now that this lupus thing had popped up, plus even though I have allergies I still have dry eyes and mouth and I always feel like I am sucking on cotton. It gets annoying and I have tried all kinds of stuff and found nothing that works yet. I feel for anyone that has to deal with this.

I have explained this to several of the doctors that I see and have seems to get no where with it, but now that I am seeing a new rheumy dr maybe I can get somewhere who knows???

I have never heard of the plugs I will have to look that up and see what I can find out about it, It sounds interesting maybe it would help.

take care

Corella
09-29-2011, 07:46 AM
I don't know very much about Sjogrens but I have felt for years that I have had this, I have lost all most all of my teeth, was told years ago that it was due to reflux but I am thinking different now that this lupus thing had popped up, plus even though I have allergies I still have dry eyes and mouth and I always feel like I am sucking on cotton. It gets annoying and I have tried all kinds of stuff and found nothing that works yet. I feel for anyone that has to deal with this.

I have explained this to several of the doctors that I see and have seems to get no where with it, but now that I am seeing a new rheumy dr maybe I can get somewhere who knows???

I have never heard of the plugs I will have to look that up and see what I can find out about it, It sounds interesting maybe it would help.

take care

I like your description of sucking on cotton - that is so very true, I am dreading summer as I react badly to the sun and feel sick and dizzy and last summer could barely swallow my food.

I think my plugs are going to cost $130 aud per plug and I think he is starting off with one in each eye to see how I tolerate them, I hope it doesnt hurt too much, Ill let you know how I go with them.

Do you have a metallic taste in your mouth? I do and its horrible. This eye doctor was so nice and said he bets I cant wait to have a name for what I have but he is almost certain as to what it is.

I tried Cellebrex as a painkiller and it was really good for pain but bought on my asthma so I am pretty limited. Ill let you know how the plugs go.