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! 

Dry Eyes: Solutions, Part Four

Blue stain from testing

After LipiFlow Treatment, blood serum drops, and wearing bandages, I've reached a plateau. Which means, amniotic fluid eye drops. I'll post again when they arrive in their cooler, and I've used them for a period. I'm going to share average costs, so far, as it might be helpful to others considering dry eye treatment. The list is aside from the doctor visits which are covered by insurance and fitting prescription lenses to goggles. 

LipiFlow: $1,400

Measurements after LipiFlow: $140, a year

Bandages: $100, a month

Blood Serum Drops: $340, 3 times a year

Amniotic Fluid Drops: $500, a month

Oil Vitamins: $30, a month

My eyes may need LipiFlow to be repeated this year. When these treatments can be measured, repeatedly, as effective, it is wrong insurance will cover nothing. Eye sight is lost by those who can't afford these solutions.

Here's to health care that can, one day, care for all.