Author Topic: XIIDRA: how it helps  (Read 642 times)

Sharon

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XIIDRA: how it helps
« on: January 08, 2019, 07:01:37 AM »
For those of you using Xiidra eye drops:
How has it helped your eyes?
Has it made them whiter/given you more tears/made them feel less dry....?
I am trying to decide if they are worth the cost of importing them to where I live.
Thanks!  :)
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

markt

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Re: XIIDRA: how it helps
« Reply #1 on: January 08, 2019, 07:26:41 AM »
I used them for a three month period in 2017; at that point in time I could not objectively verify that they were doing much of anything for me (that Restasis had not previously)... perhaps I did not used them for a long enough period of time. They did not noticeably cause a drop in inflammation of the conjunctiva for me either... 

Lacriprep is the only thing I have used to date that has improved corneal clearing, dropped surface inflammation/ocular staining, and objectively increased tear production (by way of Schirmer testing).  It literally made my eyes stop hurting.  Unfortunately, it is still being trailed for Sjogrens Dry Eye at present.

Sharon

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Re: XIIDRA: how it helps
« Reply #2 on: January 08, 2019, 07:36:10 AM »
Thanks Mark, they are supposed to work within 2 weeks of beginning them,
so it sounds like they didn't work for you.
Running out of options here...any idea when Lacriprep may be available to the general public?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

eye2dry

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Re: XIIDRA: how it helps
« Reply #3 on: January 13, 2019, 05:57:59 AM »
Xiidra has really worked for me. I have been on it nearly 2 years now. Less inflammation to
eyes, less gritty feeling and burning, my eyes feel wet.
Restasis never worked for me.
I must add that I also have my lower tears ducts cauterized (2010) which also helps a lot.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Sharon

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Re: XIIDRA: how it helps
« Reply #4 on: January 13, 2019, 01:43:08 PM »
Thanks Shelly, glad it's working for you!
How bad off were your eyes when you began Xiidra?
I have tried punctal plugs but they don't help me.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

eye2dry

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Re: XIIDRA: how it helps
« Reply #5 on: January 13, 2019, 08:02:24 PM »
Hi Sharon.

When finally diagnosed with RA and sjogrens my eyes were my main complaint.  It was my complaint for 10 years before I got the hip pain that  finally got me diagnosed (positive labs)
No one knew enough to say I had sjogrens all those years. As you may know, RA also affects the eyes.
I had to give up contact lenses for good
Light sensitive, looked like I was always crying, blurry vision, stinging, burning and actual pain
In the eye itself.

When your eyes get that bad...you can't concentrate on a conversation, a movie, book....
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

rapnzl

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Re: XIIDRA: how it helps
« Reply #6 on: January 13, 2019, 08:41:19 PM »
Without benefit of diagnosis, and not having tried other procedures or medications, I can still say that Xiidra has helped me. I admit that I didn't realize just HOW much until I found myself at the end of my prescription, awaiting my doctor follow-up for a refill.

Without Xiidra, my eyes feel as if they're buried in sand. As with eye2dry, my visual acuity suffers when I don't take it, as well.  I need other eyedrops much less when I am on it - twice a day, mostly less.

SjoGirl

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Re: XIIDRA: how it helps
« Reply #7 on: January 14, 2019, 02:07:09 PM »
Unfortunately for me it made my eyes burn badly so I could not use it. I am sticking with Restasis and plugs.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Sharon

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Re: XIIDRA: how it helps
« Reply #8 on: January 14, 2019, 02:16:05 PM »
I feel exactly how you've described the dry eye suffering eye2dry and rapnzl.
It has literally taken over my life.
Xiidra seems to be a hit or miss drop as some seem to really benefit from it and others not.
The cost for me would be extremely high importing it overseas, but I'm at my wits end at this point.
Sounds like it would at least be worth to try it to check if it even works for me.

Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

lorigacc

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Re: XIIDRA: how it helps
« Reply #9 on: January 15, 2019, 05:37:37 AM »
Xiidra worked for me within the first 48 hrs I used it. It has truly been a miracle drug for me. Prior to that my eyes were a nightmare. Restatis never helped.  Good luck, hope you find something that works for you.
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Seizure disorder, Neuropathy
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Sharon

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Re: XIIDRA: how it helps
« Reply #10 on: January 15, 2019, 07:54:27 AM »
Thank you lori, it's very encouraging to hear that  :)
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...