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 and Sjogren's Dry Eye: Rose-Tinted Glasses

So, I've waited to post about my new glasses because I was trying to figure out the full effects for me. I still haven't reached my final conclusions, but I wanted to share at least what I've gathered so far.

Since manifesting lupus, I've known of my photosensitivity. But when a doctor used the term photophobia, I looked into it and came to learn more fully that dry eye itself, from my lupus and Sjogren's, causes photosensitivity. The two terms are often used interchangeably. Yet, photophobia led me to sites that mentioned the benefits of rose-tinted glasses. In particular, Theraspecs manufactures a line of glasses to aid dry eye patients and those who get migraine headaches.

Therapecs will create plain or prescription lenses. My particular insurance could not be applied to their line so I went to my optometry department to see what I could find independently. The migraine lens tint is FL41 and only ran about $20.

In the above picture, the left glasses are Theraspecs (thanks to my mother-in-law) and the right are mine. There's a difference in the red saturation between the two, but both are effective. My value is about 1.5, and the left lenses are likely a 2. I found value 3 to be too dark to see in dim places. It also kept others from seeing my eyes which created a sense of isolation.

Here are my results, after a month:

1. I'm able to walk through a room where the blinds are open. (Because of lupus, I still wouldn't choose to sit in the light and expose my skin for a longer period.)
2. I can sit in a room with artificial light that others would consider normal.
3. I can look at screens for a longer period.
4. With extended exposure, say if I'm driving, only 1-2 symptoms of lupus manifest at a time, rather than 5 or so.
5. My full lupus flares last a couple of days instead of 1-2 weeks.

This is life-changing! I'll continue to monitor how it goes and if the benefit sustains. Right now, I'm rocking the groovy glasses and the world looks very rosy.

Dry Eye: Solutions, Part Seven, True Tear

I tried a device called True Tear, that I wanted to share. It relies on neurostimulation. Essentially, it fits up your noise, zaps the nerve at the top of your nasal cavity which in turn makes your eyes tear.

It doesn't hurt, but it may be a tad uncomfortable. Side effects can be headache and nosebleeds. The cost for me was $1,200 with $100 new tips needed each month. Neither is covered by insurance. The aim is to replace the use of artificial tears. 

I'm returning the device within thirty days of purchase for a full refund as I didn't find my eyes were able to tear with Sjogren's and my past cancer treatment. Other people are having success though. Here are more details. 

Article

Video

Dry Eyes: Solutions, Part Three

So, I had LipiFlow! It's a 12 minute treatment, FDA approved, which uses thermal pulsating heat to open the meibomian glands. There are about 50 glands in the upper lids and 25 in the lower lids. You can read more here.  

Simply: thick, eye, cup-like contacts were inserted, which protected my eyeballs from the upcoming heat. The outer cups then heated the insides of my eyelids to 108.5 degrees. At the same time, exterior "massaging" pressure helped flush the melting meibum out of the glands. Many of mine are already dead, but the effort is to save and support those glands still working. 

Despite FDA approval, the $1,700 treatment isn't covered by insurance. 

It didn't hurt! Although toward the end it was quite warm. The "massage" feels more like pointed pokes, over and over, but I wouldn't call it pain. It's kind of a facial for your eyelids. 

80% of patients don't need it repeated. I fit the profile for the 20% who do. Some yearly.

That's a quick take for LipiFlow. Now that my glands are empty, it will be about 6 weeks of more dryness before they fill and stabilize. More soon. Back to writing!