Sjogrens - need advice

[kimby2007]

Hello,

I have been reading these forums online for a couple of months now and they are really helpful. I am a 25 yr old female with Sjogrens syndrome. I was diagnosed based on clinical symptoms as well as a high ANA (specific sjogrens antibodies negative, lip biopsy skipped) To be honest I really never felt it coming. I wore contacts for yrs and had the occassional infection/dry eye but all relieved within a short time and no recent episode for over 4 yrs. That is until May of this year when one of my eyes became bright red. Doctors actually assumed it was from my contacts and treated both eyes (even though only one was red) much to my surprise but I figured they had the microscope I didn't. I got better and then all of sudden-pow-both eyes extremely red and dry. I was then told I had allergies but eventually that was discounted when my allergy test came back negative. My eyes haven't improved since the second episode and the dry mouth, arthritis, fatigue, etc all came on as well.

I am now on restasis but only 3 weeks in it is too soon to see any results. I unfortunatley cannot predose with Lotemax since I have trauma induced cataracts in both eyes. I am also on Evoxac which helps my oral dryness but I don't see any improvement with my eyes yet. I am also taking TheraTears nutrition daily.

The eye pain is honestly unbearable at times (especially when I am at work on the computer) and it is very difficult to get others to understand how painful dry eyes can be. Especially because the pain/discomfort never relents.

I know this is going to sound extremely superficial and I totally admit it is but does anyone know/have any experience with contact lenses and sjogrens. Obviously my health and not vanity should be my first priority but I feel that if I have a goal (like wear contacts again) it my help me improve in general.

Sorry for the long post. I have been reading all your stories daily and they have been helping me greatly

[Silverlady]

Several of us

There are several of us who post on this forum who have the same symptoms caused by Sjogren's. Your story sounds all too familiar.

I honestly cannot tell you or advise you if you will be able to wear contacts again. My Sjogren's has advanced to the point where I am not remotely comfortable without moisture chamber eyeglasses. I can't even imagine putting a contact in my eye. I am using all the medicines that are advised for the disease.

There may be other people who will be able to tell you that they wear contacts with their dry eyes. But I can't.

Billye

There is a Sjogren's forum at www.sjogrensworld.org

[Dryeye22]

I always think it is good to have a goal. I do not have sjrogens but I have very little tears. Schirmer of 2 last time I was at the docs.

You might be interested in looking into the boston sclera lens. I am in the process of doing so now. It might give you some relief and help with some vanity issues (which sound so trivial but I mean its important being so young!)

Anyway...good luck!

[stephgurl1986]

My goal is to be able to wear contact lenses again- at least for 2-3 hours maybe once a week. Would be great. I'm far away from being able to do so but I believe in research (there will be contacts or good drops in the future).
I'm 21 and I might have sjögren as well. My blood test was negative but there was a change in my proteins. Next week I will have a biopsy.
I've had dry eyes for several years now and that's why doctors believe I might develop sjögren...

[kimby2007]

Thank you

Thank you all for your responses. I am hopeful that Restasis will help with my symptoms. Obviously it won't be a complete cure but heck all I have is hope right now. Plus I can keep my mind open that there are other advances available should restasis fail. As you all know all to well there is nothing like dry eyes. With Sjogrens I have all sorts of pains but the one that absolutely tortures me are my eyes. I so worry about having to give up my career because of my eyes and then I worry about money, health insurance, etc. It is so amazing how life can go from carefree to beyond stressed!!!!

[Danny_]

Hello,

I have been reading these forums online for a couple of months now and they are really helpful. I am a 25 yr old female with Sjogrens syndrome. I was diagnosed based on clinical symptoms as well as a high ANA (specific sjogrens antibodies negative, lip biopsy skipped) To be honest I really never felt it coming. I wore contacts for yrs and had the occassional infection/dry eye but all relieved within a short time and no recent episode for over 4 yrs. That is until May of this year when one of my eyes became bright red. Doctors actually assumed it was from my contacts and treated both eyes (even though only one was red) much to my surprise but I figured they had the microscope I didn't. I got better and then all of sudden-pow-both eyes extremely red and dry. I was then told I had allergies but eventually that was discounted when my allergy test came back negative. My eyes haven't improved since the second episode and the dry mouth, arthritis, fatigue, etc all came on as well.

I am now on restasis but only 3 weeks in it is too soon to see any results. I unfortunatley cannot predose with Lotemax since I have trauma induced cataracts in both eyes. I am also on Evoxac which helps my oral dryness but I don't see any improvement with my eyes yet. I am also taking TheraTears nutrition daily.

The eye pain is honestly unbearable at times (especially when I am at work on the computer) and it is very difficult to get others to understand how painful dry eyes can be. Especially because the pain/discomfort never relents.

I know this is going to sound extremely superficial and I totally admit it is but does anyone know/have any experience with contact lenses and sjogrens. Obviously my health and not vanity should be my first priority but I feel that if I have a goal (like wear contacts again) it my help me improve in general.

Sorry for the long post. I have been reading all your stories daily and they have been helping me greatly

Hi there!

It sounds like you are going through an awful time. Well, at least you have come to the right place and can talk to us about it. I'm not sure if you can try them or not as I'm not familiar with the complications you have with your eyes but I'm doing a trial of lacriserts right now and they are helping me a lot. If you can try them, I would although I know that a few of the other sjogren's sufferers tried them and had no luck. Your doctor will probably want you to give Restasis a few months first though but it's another option to consider after that for you.

I hope you get some relieve soon!

Danny

[painintheeye]

have you done any research on LDN therapy for Sjogren's?

Hi,

I have possible sjogren's as i've suffered dry eye and both dry mouth. i've written my experience with LDN therapy which you may search on this forum under low dose naltrexone. it's been 2 and a half months since i started Ldn therapy, my mouth remains normal, no more dry mouth symptoms while my dry eye symptoms are still improving gradually. i am not pushing everyone to try LDN but there are a lot of success stories with autoimmune diseases with LDN. if you are also suffering with RA, you may find that LDN is very successful in stopping arthritis progression and pain. i urge you to read my threads and sign on the yahoo ldn chat group to ask questions for yourself. i've tried to contact you before but couldn't because you were not accepting any emails. i wish you luck. btw, there's also some discussions on the SS forum regarding LDN therapy which you may look into.

sincerely, chris c

[Danny_]

Hi,

I have possible sjogren's as i've suffered dry eye and both dry mouth. i've written my experience with LDN therapy which you may search on this forum under low dose naltrexone. it's been 2 and a half months since i started Ldn therapy, my mouth remains normal, no more dry mouth symptoms while my dry eye symptoms are still improving gradually. i am not pushing everyone to try LDN but there are a lot of success stories with autoimmune diseases with LDN. if you are also suffering with RA, you may find that LDN is very successful in stopping arthritis progression and pain. i urge you to read my threads and sign on the yahoo ldn chat group to ask questions for yourself. i've tried to contact you before but couldn't because you were not accepting any emails. i wish you luck. btw, there's also some discussions on the SS forum regarding LDN therapy which you may look into.

sincerely, chris c

What does LDN stand for? Is it a laser therapy?

[Lucy]

Danny, it's buried in the post.

low dose naltrexone

Lucy

[Danny_]

Danny, it's buried in the post.
Lucy

Yeah sorry! Didn't want to look at the computer much that day!