New member with questions

[tjjohnson]

Hi,

My name is Tami and I have sjogrens like the rest of you.  I have had plugs put in my tear ducks along with various other treatments as I am a patient at OHSU in Portland, OR.   I wear Jupiter Scelerel contact lenses that were built from Portland, OR.  Curious if any of you have the prose treatment devices from Boston?   I have so much glare from my lenses it is very difficult to go into public buildings.  They also build up residu on the inside with time.  Also I feel they get tight within about six hours.  My husband and I are considering the prose treatment devices built in Boston.  PLEASE if there is anyone out there that wears these lense tell me the pros and cons before we spend the money going to Boston.

Thank you so much

[Crymeariver]

Hi Tami,

Welcome to the forums!  I don't have any first hand knowledge of the Prose device but I just read about it while getting treatment for dry eye and Sjogren's lymphoma at the Kellogg Eye Center at the U of Michigan. 

http://www.kellogg.umich.edu/news/newsletter/fall2010/prose.html 

Are there any facilities closer to you that fit the lenses and you can follow up with?

[Joe S.]

Welcome to the forum.

[Meld256]

Hi Tami,

Welcome to Sjogren's World! 

I don't have any advice about the Prose device, unfortunately. Seems like Crymeariver has some info. I just wanted to welcome you, and tell you I hope you find the site useful and very friendly.
We all seem to be in "the same boat" and being able to advise, encourage and support one another is a fantastic thing!

Please feel free to ask anything at all; someone will have some information. I look forward to hearing more about you. Good luck with your treatment options.
Melinda

[Meld256]

Sorry to "hijack" the thread, but have to say "Hey Joe, we can see your face!"  (still need to fix my pic)

[flutterfly]

HOWDY TJ...thems my initials 2!!! welcome ta the treehouse!!!

let me help ya up the ladder...as i'm still workin' on the ~pully system~!!!   

hope u will find it comfy here!!!

~*flutterfly...never minds p.m.'s if u like ta chat!!!*~    

[connectedvisions]

Tami,
I recognize that I am responding to your post somewhat late as your initial post was in the spring of this year. However, I just came across your post and wanted to respond. I hope that things have been getting better for you.

Again, since your post was some time ago, I do not know where you are in the process of exploring PROSE treatment options. If this is something you are still considering, I wanted to let you know that you could contact Nancy Lemist, who is the New Patient Affairs Coordinator for the Boston Foundation for Sight (BFS). She may be able to connect you with a current PROSE patient who could talk to you about his or her experience. She can be contacted by phone at 781-726-7501 or email at http://www.bostonsight.org/Contact-Us.

Also, BFS has partnerships with twelve specialty eye care centers across the U.S., including a partnership with Doheny Eye Center in Los Angeles (http://www.bostonsight.org/PROSE-Partners/US-Partners/Doheny-Eye-Center-University-of-Southern-California-Los-Angeles). If you are still considering PROSE treatment, this clinic may be a good option for you as it is currently the closest PROSE provider to Portland.

Please let me know if I can be of any further help to you regarding your interest in PROSE.

Wishing you well,

Janice M. Epstein
Online Community Advocate
Boston Foundation for Sight
connectedvisions@bostonsight.org 

[Keuka]

Hi. Drs currently are testing me for sjogrens.  Have thought it was a mitochondrial problem for over a decade.  Interested in the glare problems.  Have had them since 2003.  Can see traffics lights over 2 miles away. Need to wear a hat.  All red objects over 6 feet way have a black outline around them. 2 differnt neuro-ophthalmologists have not been able to explain it. 
Have dysmotal intestinal tract.  3 diopters of prisms in each lens of my glasses.  Lots,of fatigue.  Can sleep 10-12 hours per day. Joint pain in hips and trouble lifting arms at times. 
Keuka

[SjoDry]

Hi Tami,

Like the other Sjoggies, I would like to say Welcome to you. I am sorry I don't have any experience or information regarding the specialty device/lenses you mentioned. There are lots of forum members &
they don't all stop in every day. So perhaps in the coming days, someone with experience may be able to help you.

In any event, we are glad that you are here. I wish you the best of luck.

Take Care.
SjoDry