Serum Drops - Good news

[PotatoCakes]

Still have DES of course but today I got some good news. It appears that the serum drops have been improving my eye, or undoing some of the damage. I've been on them since March, 50% serum drops, multiple times a day -- I go through a bottle a week give or take (I've been using them more often than 6x a day that many are prescribed).

The other good news with this is that it's possible now that my eyes are a bit healthier, Restasis might start working (I also just started using mineral-free, compounded Restasis so it's not as irritating to my eyes). I'm really hopeful.

I did ask the doctor if she thought I'd have to take the serum drops forever and she said she didn't know. Some patients, once they regain some of their eye health, can go off the drops but others can't. We don't know which I am yet. I've decided I'm ok with that (for a moment, I wasn't sure). It's a pain -- just had 10 vials pulled today for more drops -- but if it saves my eyes and allows other products like Restasis to work more effectively, it means I'll be able to have more of a normal life and THAT will definitely make it all worth it.

[Guest]

So happy to hear they are helping you! Back when I started them myself, I was honestly just going through the motions - I was trying them just to scratch one more thing off the treatment guideline list - I was totally pessimistic about the chances of them helping me - luckily, I was wrong about that, and they DID help me!

I get 13-14 9ml vials (117-126ml total) of blood drawn every 3 months - that ends up giving me about 50ml of 100% serum drops for a 3 month supply, using them 4 times per day. I've never tried using them more than that on a regular basis though...you've reminded me that it's on my to-do list of things to try eventually... I'm the freak of the lab though haha... I'm their only patient that is on 100% serum and therefore needs so much blood drawn at once - I'm lucky I have good veins!

[PotatoCakes]

Tell me more about 100% drops. I was wondering if a higher concentration might help me. I know some people here have had luck with 20% -- I don't know if concentration makes a difference or not.

Are your drops very thick? Every once in a while, I find the bottle won't "drop" and I have to shake it and then it works. I just assume that's an undiluted bit of serum or something.

You're lucky you have such great veins! I've always been so fearful of needles that frequently my veins collapse. Since my eyes have gotten so much worse though, I spend so much time getting blood draws, I'm getting better. Still, I think 10 vials is my limit!

[Guest]

I've had that happen too, where the bottle won't "drop" - same as you, I shake it, and it works. I have a theory on this though - usually when this happens, I can see some tiny little red blood cells in the serum... I assume those are what sometimes clogs the dropper.

The 100% serum is even easier for the pharmacy to "make" - they just put the serum straight into the eye drop bottles without diluting it. If I recall correctly, the DEWS report mentions that increased concentrations of serum MAY be associated with increased efficacy. I had found one study on this ages ago, that's what led me to try the 100% serum in the first place... but I haven't been able to find the study again since! Anyhow, no 100% certain proof that higher concentrations are better, but there's little downside to trying as far as I can see.

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

Until I had kids, I was terrified of needles... but now, after a wickedly aweful first delivery, a c-sec for the second one, I'm not scared of much anymore

[bp77]

does the serum helps with the inflamed eyelids? thanks.

[PotatoCakes]

I think serum drops do help with inflamed eyelids, indirectly. Not sure about directly. I've noticed an improvement with my eyelids (not huge improvement but some). I think once you get the surface area of the eye healthy, the rest of the eye (lids, etc) have a chance to recuperate too. I don't know for certain, of course, but that seems to be the way it's working with me to some degree.

SAAG - Your guess about the clogs sounds right on. It didn't occur to me it might be a bit of blood but since you have 100% serum, it wouldn't make sense for a serum clog like I thought. I just picked up my 2nd set of serum drops today (this time 10 vials made 12 bottles! Yay, 2 more bottles due to good hydration). Monday when I see the specialist that prescribed me the drops, I'll ask him about 100% and see if he'll consider it. Part of me thinks it sounds really appealing -- but the part of me that faces that needle is thinking, I definitely won't get 12 bottles if I'm using 100%!

[Guest]

Haven't seen anything about that in my reading... I've always thought its main benefit is in healing/treating the ocular surface itself.

[PotatoCakes]

C&P from article linked by SAAG (re: percentages) from p. 169-170

Serum is the fluid component of full blood that remains after clotting. Its topical use for ocular surface disease was much stimulated by Tsubota’s prolific work in the late
1990s.
111
The practicalities and published evidence of autologous serum application were recently reviewed.
112
The use of blood and its components as a pharmaceutical preparation in many countries is restricted by specific national laws. <snip>
113
Concentrations between 20% and 100% of serum have been used. The
efficacy seems to be dose-dependent. Because of significant variations in patient populations, production and storage regimens, and treatment protocols, the efficacy of serum eye drops in dry eyes has varied substantially between studies.
113
Three published prospective randomized studies with similar patient populations (predominantly immune disease associated dry eye, ie, Sjogren syndrome) are available. When comparing 20% serum with 0.9% saline applied 6 times per day, Tananuvat et al found only a trend toward improvement of symptoms and signs
of dry eyes, whereas Kojima et al reported significant improvement of symptom scores, fluorescein-breakup time (FBUt), and fluorescein and rose bengal staining.
115
A prospective clinical cross-over trial compared 50% serum eyedrops against the commercial lubricant previously used by each patient. Symptoms improved in 10 outpatients, and impression cytological findings improved in 12 out of 25 eyes.
116
Noda-Tsuruya and colleagues found that 20% autologous serum significantly improved TFBUT and decreased conjunctival rose bengal and cornea fluorescein staining 1-3 months postoperatively, compared to treatment with artificial tears, which did not change these parameters.
117
Additional reports of successful treatment of persistent epithelial defects—where success is more clearly defined as “healing of the defect”—with autologous serum substantiate the impression that this is a valuable therapeutic option for ocular surface disease.
118

[Trac]

When I first started using serum tears my doctor told me to use them 4-6 x daily. I found an article on line that said there was more patient improvement with 8 X daily. So I asked my doctor if it was okay to increase the dose. He said yes, but I don't always get to it 8 times a day. It does seem to be helping.

[jimi51]

Hi,
I have been seeing a couple of residents at the Southern California School of Optometery where they have taken an interest in my case. I am 2 -1/2 years post L-word and am a mess. I have tried many therapies to no avail, they are now getting the paperwork in order for serum drops for me as well. Do I have something to look forward to? I hate to get my hopes up but they are very helpful and the cost seems very reasonable to me. These doctors have found a compounding pharmacy for me in northern Ca. I am hopeful after hearing this, thank you!

Brad

[Trac]

Brad,
I have been on serum tears since mid April, I feel like the serum tears have made a big difference, but I am a high school teacher and I have been on summer break since Mid June, so the real test will be when I start back at school in a week. I am also already on lots of other drops, and ointments, pills, plus all 4 tear ducts plugged and eye moisture chamber goggles, I don't even care that the goggles look totally dorky, it is great to not have my eye lids swell shut. So give it a shot and let me know how it works for you, we probably get them at the same pharmacy.

Trac

[jimi51]

Hi Trac,
I am eagerly awaiting for the final approval through the college, I also find it interesting that no doctor I went to would ever consider this for me as it is "not FDA approved" like that should be a yard stick for proper care! Anyway, there is a Dr. at this college who immediately signed off on it and they are helping get it done. I think it will be about a week yet before I get my first blood draw. Can you tell me in what ways does it seem to help you? For example does it cut down on the morning painful, red eyes or does it help with just being able to be outside better? I too am on all types of supplements, I have been through Azasite, Lotemax, I am on Doxy currently, I have been plugged (X4) for two years now, I use Refresh throughout the day, etc..Thanks for your help and support!

Brad

[Trac]

Brad,
Sounds like we have been on the same routine. My doctor is very cutting edge. He suggested serum for several months before I actually started using it. I got to the point where the numerous amounts of artificial tears (refresh plus preservative free) seemed to make my eyes feel like I was washing out anything that was good for them and just putting in water which needed to be replaced with more drops every few minutes. When I started on the serum my doctor told me to not use the artificial tears any more so I did not wash out the good stuff in my eyes. I have only used artificial tears once since I started on the serum, that was at a movie. When my eye doctor was drawing my blood for the serum, I told him I was willing to be a guinea pig for anything if it would help my eyes and he told me at that point that that was what I was being right there and then. I did not realize that this was not FDA approved at that point. Although I had read about studies that were done with serum.

My eyes feel less dry all of the time with the serum, sometimes my eyes even feel moist. They are not great, sometimes they are not even very good, but they are almost always better than before. I started with the drops 4-6 times a day and now I am up to 6-8 times a day. I read on this forum that at least one person was told to use the serum every hour. I get a lot of filaments in my eyes which causes a lot of discomfort and obstructs my vision. I am now using mucomyst 4 x daily to break up the filaments. The only thing that helped my red eyes was steroids, which increase my eye pressure a lot, so the only steroid I am currently on is FML ointment.
Lotemax was awesome for clearing up my red eyes, Azasite was way to painful for me to endure, and I am currently on Doxy, have all 4 tear ducts plugged, plus the supplements and some other stuff.

There is other non eye stuff that I think makes our eyes worse. Stress of any type including eye strain, food, alcohol, and I heard not enough sleep.

Let me know how the serum works out for you.

Tracy

[PotatoCakes]

I'm the one who was told to use serum drops on the hour, by a corneal specialist. When I can do it, it definitely makes a difference. I still have very bad days if I'm in a very dry climate and winter is very hard on me but there are times I almost feel "normal" using the serum drops. I just wish they came in individual droppers like Refresh Plus and that I could stash them in my purse without any refrigeration / cooling.

[Trac]

PatatoCakes, If you don't put the serum in every hour how often do you use it? I try to use it every 2 hours. I am not against increasing my dosage, in fact if I have waited a long time between doses for whatever reason I will sometimes use the serum every hour to catch back with my 8 times a day. Often I only use the serum 6 times a day. But putting in serum every hour along with Restatis 4 times a day and mucomyst 4 times a day and I still use muro drops sometimes, that does not give me a whole lot of time between drops. If I know I will be out for a long time I take my serum and mucomyst with me in an insulated lunch bag with icepacks. Sometimes the serum freezes and I have to roll the bottle in my hands to thaw it out.