anyone's worst symptom their eyes and mouth like mine?

[valene2009]

i read so much on here about body pains etc. i have that a little with fatigue but my eyes are what completely kill me.. i cant go to movies-have trouble watching tv. they always look like ive been crying--my glands get clogged-i have mgd too...

is there anyone else to relate to me?

[eye2dry]

Hi Valene.

I would say nearly 80% of my posts have been about my miserable eyes. I had said many times...of all the sjogrens symptoms ,..my eyes have got to be the worst.

However...there is hope for you because my eyes are on a comfortable plateau right now. They have no symptoms!!!!!!!!!!!!!!I have a red blood vessel or two but no pain, no dryness, no blurriness, no itchy feeling.

My routine ... tear ducts closed for good, GenTeal gel eye lubricant at bedtime, maybe eye drops once during the daytime...but it may be the methotrexate helping me.
It  may be just my good fortune for now. I will appreciate it.

What is your eye routine.

hang in there.

eye2dry

[gold55]

that's great eye2dry......in fact that's miraculous!!!  I think the eyes can be helped by many things so please don't give up valene!!  get the tools you need from the ophthalmologist and from the rheumatologist and once you start on a daily regimen you should see improvement!!  It seems like we spend a lot of money on "stuff" trying this and that but soon you'll find what works and keep doing it.  I use over the counter eye stuff but I also believe in the Bio Tears Gelcaps that treat moisture producing glands by taking a couple pills per day.  I also added the sea buckthorn and I've gotten through winter OK.

[valene2009]

thanks. im using drops esp in my left eye every few minutes..you said you only have to use drops once or so in the daytime??when mine came on with my eyes i was always using constant drops.. my left eye always burns even after getting my glands expressed by my doc.. i even saw another specialist and she said my eyes were not that dry.omg. i use drops constantly.. i feel like im the only one on here putting drops in every several minutes-not hours but minutes? am i abnormal???

also my left eye is plugged and cauterized on top.. i feel like i am out of options..

[valene2009]

eye2dry-how long have you been on methotrexate?  i have been on plaquenil for 1.5 years=it hasnt helped my dryness at all. in fact i have gotten drier...

[gold55]

have any of you guys asked your Ophthalmologist about serum tears?  we prescribe them often for real dry eyes/SJS patients and they are made at a compounding pharmacy with your own blood.  they are supposed to be really effective!

[valene2009]

o yeah i tried them for a month-they did nothing for me .but thanks.. i know others they have helped

[slccom]

Valene, have you tried Restaisis? It helps me tremendously. It is expensive, but it really cuts down on the OTC eye drops you need. And, don't use the cheap eye drops. They have a preservative in them that damages the cornea with too much use.
Sharon

[4Kids]

*so far* my worst symptom is my mouth. And fatigue.  My eyes have improved so much from Salagen I can wear contacts again after 4 years! And my nose has moisture if I put my finger up it    But my mouth is quite dry without a stimulant in it. Still, it isn't so dry that is is a problem. *knock wood*  May Salagen work for me forever.

[valene2009]

yes i hvae been on restasis over 4 years. plaquenil. evoxac, fish oil. doxy, etc.. nothing helps.. thanks tho

[gold55]

that is so great 4kids that Salagen has worked so well!!!!  to be able to wear contacts again is rare!!!  hope you continue to have relief....I'm anxious to see if they get a new drug called Mucosta on the market...it's being studied with a couple others of course already offered in Japan and China but not USA

[season]

My eyes put me thru torment. I told my opthalmologist that I put eye drops in 30 to 50 times a day and he was very sympathetic and we went thru all the options. He said at this point, I could do the plugs, restasis, or the serum drops.
The only thing I haven't tried is the serum drops and I would have to travel 150 miles to get those done.

I know how you feel. My eyes are severe along with the dry mouth, throat, and nose. It is very painful.

[valene2009]

season--you sound like me.. i go tthrough so many of those little vials of drops.. feel better.. hopefuly something will come out soon to help us more.

[Madison Granny]

My eyes seem to be my worst  symptom right now.  I think it must be the pollen in the air and the wind.  I put drops every 30 minutes or so.  I use the Gen Teal gel a lot too.  Seems to help a little more.  Sometimes I just don't know what to try anymore.

[eye2dry]

hi Valene.

I think in may/june I will have been on MTX for 1 year.
I tried Restasis for 5 months with no help, it was a shame it did not work because I got it free via manufacturers coupon special from CVS. at the time.

I am going to ask my eye dr. at my next appt about serum eye drops..even though right now my eyes are doing good..at any moment they could get terrible once again on me. I want to know where around here I can find those eye drops..and does ins. cover them?

Do you feel your eye dr helpful? I am not overly fond of mine. It seems I have to bring things up...like ways i have read about on how to treat dry eyes..etc And he'll say "yes, we can try that"
I have a suspicion he does not have a big "dry eye" clientel. I have been seeing him since the 1990's . I think he likes solving "real problems" like torn retinas, cataracts, LASIK, that generally are solved. Dry eyes are a nusiance problem.....thats what I fear he thinks....maybe I am wrong about that.

I feel for you and your eyes. I have never had the gland problem (yet). It seems you are under attack from all directions at this moment.

take care...I'll be looking for reports on you.

eye2dry