Oxervate: side effects after two weeks

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? 

Update, 10/16/21

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!  

 

Lupus, Sjogren's: Neurotrophic Keratitis and Oxervate

I haven't updated any information concerning my autoimmune diseases during the pandemic. Suddenly, the world was isolating, as well, and vigilance was needed for my weakened immune system. The main lupus drug was touted by some and tested repeatedly for efficacy against the coronavirus. The extensive purchases by governments blocked deliveries for lupus patients. Shipments were finally restored when hydroxychloroquine proved ineffective for Covid19. 

So, here we are again, as vaccinations extend, we are beginning to emerge. Folks with lupus and other diseases and conditions will continue to isolate as needed, but how wonderful to have the possibility of re-entering the stream on healthy days. Preferably cloudy ones. :)

I'm really posting today to say I'm going to begin Oxervate tomorrow. This FDA-approved treatment for neurotrophic keratitis will be for both eyes. Lupus and Sjogren's have killed the nerves in my cornea, which could lead to blindness and the need for a corneal transplant. I had no sensation when the doctor pulled a string across my open eye. Right now, I have light sensitivity and extreme dryness.

Oxervate is a cenegermin, a form of human nerve growth factor developed in a lab. Potentially, the nerves in my cornea will grow, work, and survive. 7 out of 10 patients are completely healed. 

It has taken 5 months to qualify and about 5 agencies working together to make this happen. The cost is enormous, but extensive coverage is provided, bringing my cost down to $100 for 8 weeks. Compared to what I can gather would be about $250,000 without insurance and assistance. 

 

I'll post again after a bit to share side-effects for the curious and others considering the treatment. Right now, I'm waiting for delivery which will arrive in dry ice. I'll be doing drops every 2 hours, 6 times a day, for 8 weeks. More soon!