Hello
I've had Sjogren's since 2006 and I found that out by looking at when I joined Sjogren's World.
I've been taking Salagen for over 10 years and it still helps thank goodness. I used Restasis for a long time, and last time I saw the ophthalmologist I complained that my eyes were getting really dry by suppertime. He switched me to Xiidra. I had a really hard time adjusting to using it, but it has made a difference and I can get through the day pretty well. He said use the Xiidra 2x a day and keep using Restasis but I'm sort of alternating the 2 types of drops right now.
Nothing dramatic has happened except getting older, which is typical. No need for drama with chronic disease.
Sometimes I think of wearing eye make up but I don't think it would work. Any ideas?
I wrote a blog post about the Sjogren's conference I went to last year in Canada and I'll put the link here in case anyone is interested.
http://bit.ly/2Vb9ERe
Annette
Sjogren's and RA
Hi Annette - thanks for providing the link to the conference notes.
I was really intrigued by Dr. Ambrus's comment that the submandibular glands were typically the first salivary glands affected. Everything I read seems to focus on the parotids as being the primary salivary gland target. My submandibular glands are much more affected than my parotids - I am at an early stage of this disease (actually not formally diagnosed yet but have all the symptoms plus SS=A +ve) - will be interesting to see if I follow the progression he talks about of submandibular to parotid to sublingual. Also wonder where the lacrimal glands fit in that progression since they were also one of the first glands affected for me.
Very nice write-up!
Gord
Thanks Gord, glad you enjoyed it. I try to make a note of what I think are the most interesting things the speakers say.
One amazing demonstration one year was a speaker who showed us the amount of saliva produced by an average person - a big bottle, and the amount that an average person with Sjogren's produces.
It really made the effects of dry mouth obvious.
Annette
Annette,
Welcome back! Glad to hear that you are doing well.
FYI I started wearing eye makeup again but have yet to find one that will stay on for very long. I can't wear mascara because my eyelashes are so short, I am sure a result of steroid use. I was prescribed Latisse to help them grow but it's very expensive.
I tried Xidra it made my eyes burn terribly, glad to hear it's working for you. What else have you found to be helpful?
I usually only wear regular mascara so it?s easier to remove with just my regular face wash and a washcloth. I have discovered NYC eye powders to be very effective at staying on and not flaking and irritating my eyes. This brand may be very cheap but the pigment is concentrated so you don?t need a lot to add color.
I always flood my eyes with tons of Refresh Optive after washing to rinse out all residue left by the mascara or my facial cleanser. I generally empty a single vial of fluid into my eyes.
Thanks for the tips.
Today I saw the opthalmologist. He used me as an example of mixing Restasis and Xiidra. It sounds as though a lot of people who try Xiidra find that it burns. I did too but I kept on trying and it eased up.
When I asked about doing something more for the Meibomian Gland Dysfunction he suggested warm compresses and lid massage and segued into the more expensive possibilities like IPL (Intense Pulsed Light Treatment) or Lipiflow (not available here yet)
Has anyone tried IPL? I'll search the board to see.
Annette
The retina specialist I saw about a year ago also mentioned Lipiflow and described what it was. Then the let down was it was not covered by insurance and it was expensive treatment.
I think he also said typically it would need to be done on a yearly basis.
Then I tried Xiidra and got relief.
Shelly
Hi. How did you get past the draining and taste of xiidra? It chokes me so bad. I also have acid reflux and my throat is pretty raw. Insurance took away my restatis and asked me to try xiidra. I cannot tolerate it. Thanks, Bobbie
I have evidently become accustomed to it after a couple years. Yes, it stings for just
a few seconds. I told me eye dr about the stinging and he said it was a small price to pay for
Eye relief for the day.
It does give me a slightly runny nose for a short time after use (twice a day) but small annoyance really.
Shelly
Thanks eye2dry :) Bobbie
I don't always get the taste frpm the Xiidra, but when I do it doesn't last very long.
We have a generic here for the Restasis Bobby, so it's now cheaper than Xiidra. Maybe the manufacturer of Xiidra gave your insurance company a super deal to get more people onto it. In Canada Shire makes it.
Maybe I'll try the pulsed light therapy. I didn't know that Lipiflow had to be repeated.
Annette