Sharing this in case others might be thinking of this treatment for neurotrophic keratitis.
So, I'm two weeks into the Oxervate treatment. I'm using only one eye to type this update. My second shipment of medicine was just delivered in dry ice.
Week One: The first week was painful. It's not a word that was ever used by the makers, pharmacist, or doctor. So there's that. It felt like a horse kicked me in the face. The sensation was in my sinuses, throat, nose, jaw, and eyes. Over-the-counter pain meds didn't have a strong impact. Hot and cold packs, saline drops, goggles, and waiting it out were my solutions. I was told the pain was from the nerves growing back.
Week Two: The pain broke on day 8. Now it only feels like there are sticks in my eyes. I find I can do some work before 2 pm, alternating using one eye and then the other. As the hours progress in the day, the only solution is to close my eyes...and wait it out. I'm listening to audio books and podcasts. Occasionally, the intense pain returns, but it seems to ease after 24 hours.
This is all quite different than what I expected. I've adjusted productivity hopes for these two months. And that relieves pressure. It helps to know if a second round for two months is needed, it won't be back-to-back with this one. Shew. There isn't enough info gathered by the manufacturers to know if lupus and Sjogren's are making the treatment more difficult for me.
Onto week three, thankful for this drug and what it might do for my eyes. And maybe side effects will lessen soon?
Folks from around the world are asking how the experience ended. So, I did complete the entire program. The pain sustained throughout the treatment, but there was healing. My eyes became less sensitive to harsh light. Dryness declined measurably. Nerves regrew. However, now as time has passed, I subjectively feel the advantages diminishing as my autoimmune diseases (lupus and Sjogren's) diminish the progress. The doctor would like a repeat treatment; however, he is giving me time before we begin. With coupons and subsidies, I truly only paid $50 for this incredibly expensive medication in the United States. I'll aim to post again, if I repeat Oxervate. Best to you, if you are beginning!