re: Boston Scleral Lens for severely dry eyes -very depressed, searching

[driedout10]

Hi again,
So sorry that I never respond immediately to people's queries of my posts. My eyes are so dried out that I can only keep my eyes open for about 20 minutes at a time and then I am in so much pain that I need to go and lay on the couch and recuperate with drops and gogglles. I have had Sjogren's for 2 years but my eyes only became this severely dried out, so that I am completely incapacitated basically, unable to read, watch tv, do anything with my 10 year old, go outside, etc for the past 3 months or so. My opthal put me on Restasis but it has been 9 weeks now and if anything, I have only gotten worse. I do not have Blepharitis and have not had lasik. My other main Sjogren's sympotoms like dryiness in mouth, nose and my fatigue have also gotten much worse.
So, to make a long story short, I am desperate for any kind of hope that I can find a drug or device, like the Boston Scleral, that can get this under control. That's why I have been putting up posts asking about low-dose Naltrexone (no responses to that one;(, Rituxamib (doesn't seem to be available for Sjogren's in Ontario?, and this. Getting really really down. Sorry for the depressing entry.
Chun

[Katybarstool]

Hi Chun

I'm realy sorry to hear that you are suffering so much with your eyes. I don't have any advice to give you, but want you to know that I am here to send you a big hug until someone more knowledgeable comes along.

Hang in there.

Kathyx

[Chickpea]

Hi Chun

I'm so sorry to hear that you're having such a rough time.  You must be getting desperate for some treatment that makes a difference. 

I'm lucky enough to have minor eye and mouth dryness;  most of my SjS symptoms are related to central nervous system issues like mobility, tremors, pain etc.  So I can't be much help with specific treatments for the misery you're going through with your dry eyes.  However, I have got experience with more 'aggressive' forms of treatment for SjS so if I can be any help with questions on Prednisolone, CellCept, Plaquenil and a range of analgesics please don't hesitate to get in touch with me. 

Thinking of you - Chickpea

[Dolly Dimples]

  Hi Chun, Know what your feeling like, I too suffer with the dryness everywhere.    Bless,  you do seem to be a worse case than myself tho'

          I do hope you are using a humidifier, and the wash cloth treatment,  along with drops,   and a heavier gel at night.. Sorry I don't have the magic cure, but I read on here that one must be on Restasis for at least 6 months before expecting any significant change..

I am in the UK and Restasis is not yet available here, so I can't comment on it!  I find air-conditioning,   even from the vent in the car  (and any sort of air) a total nightmare as it dries  me out   Like you I go round with closed eyes..  Outside in the natural my eyes are fine!
         I  pray you get relief soon,   Hugs Dolly.x 
               

[Wynter]

I am like you. My eyes have been really bothering me. I have been to several eye doctors and they told me I am doing everything I can. Other than those lenses, you might research the blood serum tears. A few people have mentioned them on this site and  said it helped their comfort level. I mentioned them to my eye doctor and he had no clue what I was talking about. He said if I needed a prescription for them, he would write it. I believe the person named "Tuckerdog" on this site uses them. She said it didn't help the dryness, but helped the comfort level. I am willing to try anything. 

[eyeamdry]

I have had blood serum tears made.  I had to go to a university hospital to have this done 100 miles from here.  They took 12 vials of blood and I thought they were vampires.  Bottom line is the serum felt good in my eyes, but it was hard to get them made and my insurance would not pay for any of it.  It would have cost $85 or more for 3 weeks worth and I cannot afford it.  I do not think it would have made permanent change in my eyes, however.  That's my guess and you'd have to keep it up forever for any effect.

My dry eyes are from (1)lasik surgery and (2) Sjogrens.  I would tell people to try only if their eyes are so bad they can't stand it and know unless they have someone in their town who does this (likely a U hospital) they might have to travel, have the drops mailed packed in ice through the mail etc.  The serum must be kept frozen/and/or refrigerated.

Lucy

[eyeamdry]

My bad........PM posted accidentally as post.............I removed. Lucy

[tuckerdog]

If your corneas have dry patches on them then the autologous plasma drops will heal the cornea.  If they do not have dry patches (scars) the plasma drops will feel good but you won't get much improvement.  The plasma contains growth factor and that allows the cornea to heal. (For more info on medications and how they help for dry eyes see my other post - dry eyes medications explained)  In Houston the drops are prepared by Methodist Hospital blood bank.  It is considered a blood product so if your insurance covers blood products it will probably be covered.  People come from all over the country to get these drops made.  You go to the bloodbank and they draw a pint of blood total.  The whole blood is run through a plasmapherisis machine.  It separates the cells from the plasma.  The cells are given back to you with enough saline to make up for the plasma volume that was removed.  You go back to the lab a day later and pick up your drops which need to be kept frozen (freezing preserves the growth factor).   It takes about 1 month to get some improvement, after 3 months mine were nearly back to normal.  After 6 months a dramatic improvement is seen.  Now I use them only when my eyes are really bad.  I have had 2 batches made total and my corneas are nearly normal again.   My Dr only prescribes them when the pt has scars on the cornea (my eyes would get stuck to my eyelids at night so I couldn't sleep).  He does not prescribe them for simple dry eyes - the corneas need to have dry patches (scars).   I think that this may be why the plasma drops get mixed reviews.  If the eyes are only dry but not scarred, they drops will just be soothing.  For me healing the corneas was huge because I could not sleep.

Tuckerdog

[Liz D.]

Chun,

Has any eye doctor suggested putting plugs in your eyes to keep any of the tears from draining?  They were such a lifesaver for me, that I opted to have my puncta permanently cauterized shut and my eyes have been so much better since.

Liz D.