Possible Sjogrens Disease

Yeah, the prescription drop’s definitely hurt my eyes. I wish they didn’t. The cost of OTC drops and ointment is exorbitant. My best move was finding a gifted acupuncturist. He took me from despair and pain to a stable, almost normal status for several years. I still had to do the care routine daily, but I was comfortable. My ophthalmologist was shocked. She now tells her patients about my good experience. I never tried Lipoflow, since it’s expensive and not many people report it helps. I do intend to get plasma drops filled.

I may gave to go back to an acupuncturist.I had so many issues at the very beginning of my illness,but I was going to a chiropractor and the acupuncturist at the same time.I did have some improvement.I was not sure who was helping,but I think it was the acupuncturist.You are not in Maryland are you?I was going to ask you the name of your acupuncturist.Whatever happened to me attacked my vagus nerve too and the acupuncturist was very familiar with the vagus nerve.Someone was telling me that Systane Complete worked for them during the day for their dry eyes and they applied an ointment at night.I guess I will have to try different things. The prescription eye drops are just too harsh.I am just so grateful to have insurance.I worked in healthcare,but had to stop working because I got so sick.All of these tests,procedures and treatments are so expensive.I would never be able to afford it.I never thought in a million years I would be so sick.I guess no one does.

@j77 I use Miebo prescription eye drops in the daytime( luckily insurance pays $719 for a 3 ml bottle it’s an oily eye drop) and refresh optive gel drops at night. I first found out I had Sjogrens when I asked the dentist about my toungue being white all the time and he said he knew exactly what it was because his wife had the same thing. I have the dry eyes(so bad I tore the tissue on my right eye) dry sinuses. I was put on Pilocarpine but didn’t like the sweating, after about 3 years I switched to Cevelimine and the sweating was a lot worse at first I’m finally taking 2 pills a day trying to get the 3rd pill started

Yes, I use Systane preservative free drops, individual size, during the day, as needed and Systane ointment at night.

I’m not in MD, but in NC. It would be a hike to get to the place I use. It’s in Chapel Hill near I-85. I’ll PM u the name if you want. Maybe, he could give referral. He’s very talented. Wish my insurance covered it. He does more than acupuncture. Has a website.

I’ve had a lot of lab work. Most of it in Sept and Nov of 2023. It was ok then. Plus, besides the issues I have with post covid syndrome, chronic constipation, tennis elbow and dry eye, I feel awesome! I have lots of energy and my anxiety is much improved. I’ve lost most of the weight I had gained, gained some muscle, experienced increased energy and regained my old self back. Now, just to address the other issues.

Thankyou so much for replying!I am going to take a look at the eye drops you use.Maybe my insurance will cover it.I know the original eyedrops my eye doctor gave me a prescription for was over 2,000 dollars because my insurance did not cover it.Nuts!I have always had a white tongue and severe bleeding gums,but not a single cavity.The Dentists could never figure it out because my teeth have always been Great besides the bleeding gums.My eyes are so dry I am worried about tearing tissue.They are so red underneath right now.It looks horrible.I am going to check out those pills you mentioned too.I just have to find a Good Rheumatologist now.Thankyou!

@j77 it’s a newer eye drop my insurance wouldn’t pay luckily Medicaid paid and even approved a year of refills.

Thankyou so much!Your Acupuncturist sounds Great!I wish Imsurance covered Acupuncturists too.They are Amazing,but so expensive.Thankyou for suggesting the Systane eye drops and ointment.I will pick that up tomorrow.I am glad that you are feeling better.You give me hope!I keep on thinking I will just wake up one morning and be back to my old self.I realize I took everything for granted.Even a simple trip to the Grocery Store.Thankyou Again!

@j77 I use Miebo prescription eye drops in the daytime( luckily insurance pays $719 for a 3 ml bottle it’s an oily eye drop) and refresh optive gel drops at night. I first found out I had Sjogrens when I asked the dentist about my toungue being white all the time and he said he knew exactly what it was because his wife had the same thing. I have the dry eyes(so bad I tore the tissue on my right eye) dry sinuses. I was put on Pilocarpine but didn’t like the sweating, after about 3 years I switched to Cevelimine and the sweating was a lot worse at first I’m finally taking 2 pills a day trying to get the 3rd pill started

I’m going to ask my doctor about Meibo. I wonder why she hasn’t mentioned it to me already.