Autologous serum saved my eyes

[Neal]

I just came across this excellent site and forum, and after browsing the skimpy posts about autologous serum eye drops I thought I'd convey my own success using them.
Shortly after receiving a stem cell/bone marrow transplant for Hodgkins lymphoma, a side effect called Graft v. Host Disease (GVHD) started clogging up my lacrimal glands and decommissioning my meibonian glands. I haven't made enough tears to moisten a Q-tip in the last three years. The loss of nutrients to my corneas left them cratered and covered in filaments which had to be removed by hand with forceps. My punctals have been plugged and cauterized. Restasis has failed three times.
Long story short, my eyes were killing me, literally. Couldn't read or drive, and the constant suffering does mean things to a traumatized soul. Then I got the serum drops last April.
Relief was immediate and has only gotten better. I started with 50/50 serum/saline, refilled after 12 weeks with 100 percent serum, then refilled again with 50/50 serum/Bss -- Balanced sodium solution, gentler than saline, used in eye surgery. I went back to a 50/50 mix because all I needed to maintain my healed eye surfaces was a maintenance dose.
By replacing the nutrients lost when my tears dried up, the serum drops allowed my eye surfaces to repair themselves. Now they feel shielded, my vision through my Panoptx goggles is 20/20, and the agony of dry eye (compunded by dry San Diego) has been reduced by more than half. It only makes sense -- the first responder to any injury is blood, which gets to work right away on repairs.
I've seen references to the serum drops being overrated. But I've done a lot of research on them, and given my experience, and the confirmation of eye surface repair due to the serum drops by both my own opthalmologist at UC San Diego and a research opthalmologist at NIH in Bethesda (part of a GVHD study), I'd be inclined to attribute most of the lack of success to misplaced expectations and/or mishandling the serum, which is easy to do.
The serum drops work on the eye surfaces, not the tear glands. They do not increase lubrication. That's a separate issue which I hope to address by adding testosterone-but-as-DHEA to my serum drops. We've all seen the studies and ongoing trials about testosterone and tear gland stimulation.
I asked my opthalmologist by email this morning if he'd write me a prescription of fifty percent serum, forty-five percent Bss, five percent DHEA. Leiter's compounding pharmacy in San Jose has been making DHEA drops for a while, and they've been concocting my serum drops. The eye doc already thinks I've gone renegade, so what the hell.
Neal

[Lucy]

Thanks for writing about your experience, Neal. A few months ago, I, too had the serum drops made. I had it done at the U of MICH and then I had to transport the product to a compounding pharmacy 20 miles away. I have Sjogrens and eyes messed up from Lasik and I liked the way the drops felt.

I found out my insurance would not pay for this and I cannot afford to make these 200 mi round trips frequently and pay $75 for about 3 weeks worth of drops. I could have had the U of M use Leiters instead, but I would have had to pay shipping charges and all that.

I hope your healing continues. I've known a couple of people who had your result after a bone-marrow transplant. It was not a good place to be. Lucy

[HOSADOS]

hi I find serum very interesting- I havne't tried it myself, but I wonder how is serum compare with Freshkote ? (the reason I ask is that for me, only Dr. Holly's drops made a bid difference and I wonder whether there is something better)

[Richard Esser]

Questions re: Concentration of Serum Eye Drops

Thank you for the valuable information. I did try serum eye drops but in looking at the concentration mine say 20%. I did not feel they were effective. Did you feel a person should start out at the 100% concentration or the 50% concentration? I see my physician in two weeks and want to try the drops again.

Richard

[Neal]

Autologous serum saved my eyes

I insisted on starting with 50 percent serum/saline because I had called Chuck Leiter, the compounding pharmacist, and he said most of his serum eye drop customers (the majority of his business now) used either 100 percent or fifty percent serum. He said 20 percent serum was mostly for kids. Since most of the research uses 20 percent serum, I had to break up some furniture to get my doctor to write a 50/50 'script.

Here's a link to a page on my website with a lot of research and background on serum eye drops, inlcluding the elegant Leiter's protocol: http://nealmatthews.com/dryeye.aspx.

On the cost question, it will work out to about $1000 a year, based on Leiter's prices of $15 a bottle. One bottle lasts about a week, but I'm using less as my eyes heal. My last shipment (50/50 serum/Bss) was 16 bottles for $330, including shipping from San Jose. Since I won't let my hospital draw my blood anymore (competence issues), I found a local medical lab to do the blood draw, spin it, and ship the serum to Leiter's for $55. For me, after five years of the most advanced cancer treatments that are probably pushing over half a million dollars (thank God for insurance), my own blood ended up providing my most effective medicine. (The stem cell transplant didn't kill the Hodgkins.)

The fact that no pharmaceutical company is involved, because there's no profit in selling somebody their own blood, is a major reason why more Americans don't use serum drops. Most of the research and use is based overseas. Remedies with no profit potential don't get much respect in the hyper-commercialized U.S. medical community. I looked into buying my own centrifuge and making home-brewed eye drops, and I did in fact draw my own blood once and left the syringe in the fridge overnight to separate itself. It worked, and I used it in my eyes, but I wouldn't recommend doing that. It's just nice to know I could do it if I had to. I keep telling my docs, somebody's going to get rich soon by opening a chain of street corner custom eye drop shops, staffed only by an othalmologist and a phlebotomist.
Possible corporate name: Here's Blood In Your Eye!
Neal

[Lucy]

Mine was 50 percent concentration. Interesting info, Neal, on the Leiter's route of getting drops. Will be back later to re-read. Lucy

[dryeyes2]

5% Dhea?

Hi Neal,

I am using 1% DHEA from Leiter's. Did your doc write a script for 5%? I didn't know they offered a higher percent. Do you know if there is anything in between?

Thanks.
dryeyes2

[Neal]

I haven't heard back from my docs yet about getting DHEA drops. I just pulled that five percent figure out my hat, thinking it'd be a good place to start. One percent sounds awfully low. Have you had a good response with that?

What is it with doctors and email? I guess mine don't respond much because it means they're working for free? Jeez, I'd pay a separate fee for email services with my docs, since evidently such communications aren't considered as part of my regular office visits.

Here's another thought on the custom eye drop franchise. It's called Eyeshine, and the booths are next to the shoe shine stands at the airport....

[Teri]

Neal,

Thanks for the interesting info.

I, too, use autologous serum (50/50 serum/bss), and I, too, have considered buying some beakers and a centrifuge and making them myself.

I think I have a pretty nice arrangement, though, compared to most people I've talked to on here. I drive 1 hour each way and pay $55 for a one month supply (6 frozen vials, each lasts 5 days in the fridge). I do have to kill 4 hours while they spin the blood and make the drops....

I think there needs to be some standardization as to how the drops are made. I know that one well-known dry eye doc mixes the serum with your favorite preserved tears (say, Optive). I don't know if there have been any studies into how well the preservative preserves the cells/proteins/good stuff in the serum or how long it should last.

I wish more docs would prescribe/make/use them.

Teri

[dryeyes2]

Dhea

Hi Neal,

The drops worked great for the first month or so I was on them. It was 4 drops/day. My eyes felt like normal. However, my doc had me go down to 1 per day over the course of a month and my eyes got worse again. I then went up to 4 a day again and my eyes never got back to that original state. They do help me some because my eyes were worse than when I wasn't on them, but I don't feel like they do enough. My doc monitors my eye pressures and so far so good - no problem. I think being on an higher percentage might pose some problems that way, but I don't know. Make sure your doctor monitors you frequently until he is sure that it doesn't raise your pressures. If you are able to get a higher percentage, please let me know.

Thanks and best wishes,
dryeyes2

[NYer]

"Here's Blood in Your Eye" made me laugh!

Neal, with all you've been through, it's so nice that you have such a good sense of humor!

[Gerri55455]

Neal, thanks again for kindly writing back to me yesterday. I finally registered on the site today. Quick question: can you think of a condition that would be worsened by the use of autologous serum eyedrops? This is my fifth day using them (4X/daily) and my eyes kind of feel like they are getting worse. thanks again.

[Judi999]

THE ORANGE COUNty Dry Eye Support Group in Calif

Neal, thanks again for kindly writing back to me yesterday. I finally registered on the site today. Quick question: can you think of a condition that would be worsened by the use of autologous serum eyedrops? This is my fifth day using them (4X/daily) and my eyes kind of feel like they are getting worse. thanks again.

HI NEAL, Can't thant you enough for sharing your experience. I am one of the coordinators of the Orange County Dry Eye Support Group in Orange County Calif. We are just this year starting with a few of our members trying the Autologous Serum eye drops with mixed results. I would so much appreciate having the opportunity of speaking with you if you are ok with that. My e mail is jbeatty99@sbcglobal.net. This is so new to so many of our doctors here in Orange County and learning all the in's and out's of A. S. is very timely. I have been on A. S. for five month now and my eyes a doing really good with 100% serum. I hope more doctors become open to the opportunity of using A. S. to help their dry eye patients even though there is a learning curve to it or so it seems.
Kindest regards,
judi

[buntbean]

Oh my goodness Neal...is this you?! https://www.youtube.com/watch?v=3kmTTfGFQgQ

[littlemermaid]

Great video, thanks Buntbean. Look at this new UK clinical trial - fresh blood straight into the eye https://clinicaltrials.gov/ct2/show/...e+blood&rank=1. We'll see how they get on soon.