Lymetoo, I know that you said that you have it and that punctal plugs have helped you.
I have pretty bad Sjogren's with lots of damage to my lacrimal glands and saliva glands with resultant problems with loosing lots of teeth and with vision---not to mention dryness elsewhere in my body.
My question to Lymetoo, and anyone else who has it, is about the plunctal plugs. I have a lot of problems with my vision because of the dryness in my eyes. I use a lot of eye drops, prescription and OTC.
I need glasses, but have been unable to get an rx for glasses for years, because the dryness changes my vision every few seconds.
I asked my opthalmologist years ago about punctal plugs. She said, "they won't help," without elaborating why. When I asked her again recently, she said that they are temporary, that they fall out.
Is that your your experience? Do you need to have them replaced periodically? Do they help?
On another note: I have been using Xiidra rx eye drops , which help somewhat, but see that in a few months when I need to go on Medicare, they would no longer be affordable, as I would no longer
be able to use the manufacturer's coupon to lower the price!! There is no cheaper option. I will have the same problem with other meds, too. I don't know what I'll do then. Go without, obviously.
Do you have any other suggestions? Frequent eye drops seems like the only option, but they don't last at all.
Posted by Lymetoo (Member # 743) on :
I had some put in several times that were "temporary" plugs. After they kept falling out, my Dr asked if I wanted the more permanent ones.
They will last about 10 years and I'm on about year 3 or 4. VERY pleased with them.
I would venture to guess that your Dr doesn't know how to do them or doesn't know enough about them to make them work. My Dr has them in his own eyes.
I don't usually use eye drops during the day anymore. I use Systane eye ointment at night and that is it.
Find a new doctor??
Posted by Rumigirl (Member # 15091) on :
Thank you, Lymetoo. Hmm, it sounds like you're right that she doesn't have experience with the permanent ones. I wonder how I find an opthalmologist who does work with them?
Ironically I'm in a big hospital system with a big, well-known eye institute. But how to find someone who does it?? Maybe I'll ask her office if she knows who would be good?
Or try to see if the local Sjogren's Support Group has any info. But they are on hold due to Covid.
That's amazing that you can do without all the drops other than the nighttime ointment, which I use, too, although I use TheraTears.
Did you ever use Xiidra rx eye drops? They are fabulously expensive with no generic, and soon I will have no way to afford it. It's a crazy rule that when you go on Medicare, when you aren't working anymore, that you can't use the manufacturer's coupons to make the meds affordable!!
Well, if I'm lucky, and I can eventually get permanent plugs, maybe I would't need the drops anymore. At present Xiidra does help the dryness, although everything helps only so much. My eyes are so dry it is hard to imagine they would ever be better.
Thank you, again; that information is invaluable!
Posted by Lymetoo (Member # 743) on :
I've never had to use the eye drops for Sjogren's .. I don't know how I escaped that. I think I just don't want to use another steroid.
My eye clinic is NOT large. We have 5 eye doctors who rotate .. I think some go to nearby small towns one day a week.
So .. you shouldn't have to go to a big eye center or hospital. My town is one of about 10,000 .. but with many tourists and small towns around us who come here for care.
I would ask around .. I wonder if a place for eyeglasses would give you a tip on someone??
Check yellow pages too.
Posted by Rumigirl (Member # 15091) on :
My husband last year saw an older opthalmologist in the same system, read old-school doctor, which we like. I can call and ask his office if he does it. My corneal specialist, who did my cataract surgery is younger. She is great for that, but I don't think that she understands how much I need the plugs.
When I saw her last month, she said my eyes were inflamed and rxd steroid drops, which she said would help more than the plugs. But you can't stay on steroid drops! That doesn't make up for destroyed lacrimal glands
The old-school doctors are golden.
I also need to go back on Plaquenil, as all of my autoimmune stuff is awful. But most of all, I need to go back to my LLMD and get back on treatment. I've been getting horribly worse for a long time. It's hard to keep pushing to improve, but I have to.
Plaquenil can be cause retinal damage, which I already have plenty of from Lyme, and my retinologist doesn't love it. But I'm between a rock and a hard place. I wouldn't stay on it for a long time.
Thank you, again, Lymetoo.
Posted by Lymetoo (Member # 743) on :
Hope you can get it done .. it's worth a try, for sure!!
I'm sorry you are going downhill some .. get back on the upward climb!
I think specialists only know their specialty. You need someone who is used to doing the mundane.
(not mundane to us!!)
Posted by Rumigirl (Member # 15091) on :
I found out who does the punctal plugs. An ophthalmologist in the same office does it, but he is booked up until August, and only has an opening at 7:30 am. I'm a mess that early and don't want to wait that long, as I'm really having trouble seeing due to the dryness.
But an optometrist in the office does it frequently, so I made an appt for June 10th. It seems odd to have an optometrist do it, but they wouldn't have her there if she weren't good. Ironically, I had an appt
for her last week to test me for an rx for glasses, but I cancelled it wanting to wait until I had the plugs, so we could get an accurate rx.
It's been a long road trying to obtain this simple fix. I have you to thank, Lymetoo, for the information on how helpful they can be. Why should that be so hard??
Posted by Lymetoo (Member # 743) on :
I use an optometrist!! It's relatively easy to do . ..takes a few minutes and you are good to go!!