Hello Everyone! I’m new here and from North Carolina. I’m hoping to learn what others are going through and what they have tried. I was diagnosed 2 years ago shortly after I was diagnosed with Rheumatoid Arthritis. Since then, I’ve had Lipiflow treatment and, plugs. I use Restasis, Celluvisic eye drops, warm compresses, Systane gel at night and a moisture chamber sleep mask. I’ve lost a tooth, had another need a root canal and a third get a cavity, all in less than a year. My eyes burn and ache, my vision is blurry and I can only do about 25% of what I used to as I get so tired… They told me I also have meibomiam gland dysfunction and lids that don’t close all the way. Six months ago I developed diplopia in my left eye. I’m still undergoing testing for the cause. With everything going the way it is, I’m going to end up cross-eyed, toothless and crooked, lol. Seriously though, it’s very distressing. Thanks for listening. I would love to hear from you and look forward to reading more postings. Jeanne
Hi Jeanne! I have dual diagnoses as well. . . . Psoriatic arthritis first, then Sjogren’s. Dry eye and mouth hit me pretty much overnight. Thankfully I’ve had no major complications in terms of my teeth. Are you undergoing treatment for your RA? I ask because there can be some degree of treatment overlap.
I will tell you. I had very little relief from having just my bottom tear ducts plugged. I needed to get the top ones plugged to get any real relief. I do have some overflow issues, but overall my eyes are a million times better. Not perfect, but better.
Hi Stoney! Thanks for getting in touch. I didn’t even know there were two sets of tear ducts! Thanks for telling me that. I will contact my doctor and ask about it as I currently don’t get much relief.
Sorry to hear about your PA. Do you get treatment for it? I’m on Humira injections and methotrexate injections for the RA. It is so much better than it used to be. What is it like having PA?
Eighteen months after I was diagnosed with the Sjogrens I developed double vision. They haven’'t determined what is causing it yet except to say the muscle in my left eye is not working right. This is definitely not the way I planned on aging, LOL.
I’m on Enbrel for the PsA, but it will likely be getting replaced soon. Psoriatic arthritis can look very similar to rheumatoid arthritis. Mine is impacting large and small joints, and I get some of the weird add-ons like pericarditis, inflammation in my eyes, etc.
it’s not common for the top ducks to be plugged because then you do have the problem of tear overflow, but my entire response to getting my bottom ducts plugged only was that I had a tear stay in my eye for a moment and that was that. it looks like I’m crying some of the time, people that know me have just gotten used to it and I carry a little piece of fabric to dry my eyes with I keep it in my bra so I’m constantly reaching into my bra LOL.
For the double vision, have you seen a neuro-ophthalmologist yet? I was actually just listening to something earlier today and of course if you have one autoimmune disease you are likely to have more than one. You are dealing with this already. So there are a few autoimmune conditions that can impact your eyes like that, so I would encourage you to find out about seeing a neuro-openologist regarding your double vision in particular. If you’re near a major metro area you may want to consider going to a University Center of excellence.
Good Morning! Sorry about your psoriatic. Do they give you anything for the pericarditis? I wonder if Humira would help!?! Do they reccommend anything else for your eyes? If I get the second set of plus and need to do the fabric in the bra thing, I’m going to get a fabric that looks like a dollar bill or a boob, just for the shock value, lol(I actually would not do that:) I’m seeing a neuro-opthamologist(NO) at Duke University Hospital. It’s a 2 hour ride, ugh. The NO has tested me for thyroid and myasthenia gravis, I"ve had a brain MRI and will have another next month. A neurologist tested me for myelin issues. If the diplopia doesn’t worsen and my brain is stable the NO is reccommending eye surgery in 5 or 6 months. The double vision causes you to lose your depth perception, balance and also have blurry vision. It may be caused by the RA, they just don’'t know. Before they gave me a temporary prism lens, I was just lost whereever I went as you get so disoriented. It could always be worse, right? I have learned so much from this site! Symptoms I didn’t want to mention to anyone for fear they’d for sure think I was a hypochondriac, I found here. I didn’t even know that they had anything to do with Sjogrens. I try to keep a positive attitude but everytime something worsens, I go to a pity party until I can accept and adjust. This time, I thought of a support group for Sjogrens and it’s been a real boost. I’m thankful for everyone here’s sharing.
I’m glad that you’re getting so much out of this. The symptoms can be so variable, and then adding other conditions on top of it only makes it more complicated. I’m glad to hear that your doctor has been so thorough.
Yes, I’m on a medication specifically to address the chronic pericarditis. If I miss a dose or two I’ll start to flare up, so clearly it’s working.
I think you’re feeling of being judged as a hypochondriac is not uncommon. Sjogren’s can have some really wacky symptoms, and the neurological stuff can be extra confusing.
Hi! Welcome to the group!
I totally get feeling like a hypochondriac. I stopped trying to explain what’s going on to people because the symptoms revolve and change. Its always something new. Woohoo!
Glad you are feeling heard here. It really is a great place to put it all down for awhile.
Thanks for the terrific support Stoney and Enjoy Life. The neuroopthalmologist referred me back to the regular opthalmologist for the dry eye who just made an appointment for me wth “the dry eye specialist” at Duke. It’s not until May but maybe he will have some ideas. I don’t know, do people here write all of the things that are going wrong or would that be too much? I’m not sure how much sharing to do here.
I’m glad to hear that you did see the neuro opthamologist even if you were just sent back to your regular eye doctor. it’s really important and complicated cases to see the specialist for that.
People share as little or as much as they are comfortable here. Some people share a lot of details, and other people may primarily read and not participate a lot. It depends on personality and needs. Because this can impact people in a lot of different ways including some very personal ways we definitely do see all of those difference issues being brought up here.
Thanks for the information and again for the support, Stoney. I’m going to stop complaining. I think it is becoming a habit that I don’t want to have permanently. I hope you’re having a good day!
Thanks and you too! I’m glad for some milder weather right now.