Sjogrens Syndrom

[mscott455]

Hi, I am new to this site also, I actually found it by accident surfing the net on day. I have has sjogrens for over 30 years now, and have the scleral lenses for about 2 years now. I have to say that they have helped me tremendously. I am no longer photo sensitive, and my eyes are very comfortable as long as i have them in my eyes. I was so glad to find the Dwelle drops. I can actually wake up in the morning and my eyes will open. prior to the drops, i used to have to pry them open due to the dryness. I have also started using Nutra Tear, and I really think that they are both great products. I have tried so many eye drops, but only found real relief with the scleral lenses. I am hoping that with continued use of the Dwelle that my comfort will become better all the time. The only problem that I have with the scleral lens is that it drys out on the outside of the lens. causing my lens to blur, which in the grand scheme of things is trivial I guess. Does anyone know of any product that will help with this?
thanks

[Lucy]

Ms. Scott: I have the Boston Scleral Lens (although I can't wear them comfortably) but I would never use DWELLE on my lens. I use DWELLE quite often over the last few years, but never while I'm using the lens. I think Rebecca uses NutraTear when she has her lens in, but this is not recommended by the BFS.

Let me add, you did NOT say if your sclerals were from Boston Foundation, but if not, then whatever your doctor says. I'm just putting this in so people do not think it's the thing to do. I have upwards of $13,000 in my lens and wouldn't ever dare try the DWELLE even if I was wearing the lens two days later, in fear of ruining the lens. Off soapbox now.

PS. I also have Sjogrens.

[Rebecca Petris]

I don't think she was suggesting using Dwelle on the lenses if I understood right? (Or maybe you were just making it clear in case )

If you're a BFS patient I'd call Anita Sperber at the Foundation and ask what specific products they recommend for you to lubricate the topside of the lens. I have the same issue occasionally - usually outdoors & in wind, plus in the car... or in rooms with forced air heat this time of year. As Lucy said I use NutraTear (offlabel) but anything you use over the lens should be approved by the doctor fitting the lens. Also, outdoors, wrapping sunglasses or Panoptx really reduce my need for drops.

So happy to hear of anyone getting relief after suffering with this so long!!! Thank you for posting!!!

[Lucy]

Rebecca, after I posted, I wondered how this would look. My meaning was just to inform (warn) that I would not use DWELLE if I was wearing the lens then, or the next day. Anytime DWELLE could leave residue on the surface of the lens. We know DWELLE is very viscous, and I wouldn't want anyone to ruin any lens because they had not thought about it. It's possible that Ms. Scott's doctor told her to use DWELLE with her lens, and in that case, whatever anyone else said would be moot.

Ms. Scott did not differentiate if she was using DWELLE while wearing the lens. I'm just on my devil's warning soapbox.
Lucy

[Rebecca Petris]

Ah, I get it, thanks. Yes, guidance would be needed from BFS for any use of Dwelle while the lens is in the eye .

I have to point out though that viscosity is not the issue. In fact, BFS have some patients using Celluvisc IN the lenses specifically BECAUSE of the viscosity (which slows down fluid exchange and prevents debris from getting under the lens). Celluvisc and the liquigel products are more viscous than Dwelle. Dr. Holly is not a believer in high viscosity in general for lubricants.

As far as I know patients using BSLs can use any OTC lubricant they want anytime they are NOT wearing the lenses, except for the petrolatum/mineral oil ointments (Refresh PM, etc) which cannot be used at night by BSL users because they leave grease in the eye that could get on the lens and coat it.

Just being my nitpickety detail self