Announcement

Collapse
No announcement yet.

Autologous serum saved my eyes

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Dreeyegirl199
    replied
    My docs says Leiters no longer makes serum tears and no one in the Bay Area does it seems. My doc used Imprimus pharmacy... they had a mobile phlebotomist come to me, take my blood then shipped my blood to Imprimus to make the AS. Got it delivered overnight in dry ice. Drops cost $375 plus the mobile phlebotomist ... I think $500 total for 3 months worth of drops. My doc prescribed 50% serum.

    Leave a comment:


  • Gerri55455
    replied
    Hello SS_in_SD, Please contact Neal Matthews on nealmat@cox.net - he has been a great resource for many of us. He lives in San Diego, I believe

    Leave a comment:


  • SS_in_SD
    replied
    Hi, everyone - sorry to resurrect an old thread, but thought it might be better than starting a new one.

    Does anyone know of a compounding pharmacy in the San Diego area that can make autologous blood serum eye drops? I got my first batch through the Gavin Herbert institute at UC Irvine, and I've had great success with them - but I live in San Diego. I've tried three places down here Optimum, CAPS and San Diego Compounding Pharmacy, but no luck.

    Thanks in advance for any info.

    Leave a comment:


  • Judi999
    replied
    HI NEAL This is Judi Beatty with the Orange County Dry Eye Support Group. I am looking for your e mail address or phone number. We spoke at length when i was just starting with autologous serum and know you are quite the expert on it. Could you e mail me at - jbeatty99@sbcglobal.net -- as I would love to get more information about the different concentrations as I believe the 100% concentration is causing hyperosmolarity and burnig - etc. look forwrad to hearing from you.

    Leave a comment:


  • Judi999
    replied
    Originally posted by Neal View Post
    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
    I am really interested in he research you have done as I am one of the coordinators of The Orange County DryEye Support Group . Could you please e mail me at jbeatty99@sbcglobal.net thanks so much. Judi

    Leave a comment:


  • msny
    replied
    My eye doctor has suggested I try this, still thinking about it.
    The YouTube video is interesting, but one doesn't always have a nurse
    or qualified person to draw blood.

    My insurance does not cover any compounding pharmacy fees, as I think
    most do not anyways. The cost would range between $200 to $300 a pop, including blood draw.

    As an alternative the pharmacy is suggesting I first try Albumin (synthetic blood drops) 4% for about $40
    dollars for a small mount.

    So I'm on the fence about this, but I think I could afford the $40 and give it a try.

    Leave a comment:


  • unicorn
    replied
    http://www.researchgate.net/profile/...ry_eyes/links/

    Fascinating study and looks like results are promising. Thank you Littlemermaid for bringing this to our attention!

    Leave a comment:


  • buntbean
    replied
    I saw that too. I'd hate to have to prick my finger 8X a day though!

    Leave a comment:


  • littlemermaid
    replied
    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.

    Leave a comment:


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

    Leave a comment:


  • Judi999
    replied
    THE ORANGE COUNty Dry Eye Support Group in Calif

    Originally posted by Gerri55455 View Post
    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

    Leave a comment:


  • Gerri55455
    replied
    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.

    Leave a comment:


  • NYer
    replied
    "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!

    Leave a comment:


  • dryeyes2
    replied
    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

    Leave a comment:


  • Teri
    replied
    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

    Leave a comment:

Working...
X