Serum Drops - Good news

[PotatoCakes]

I aim to use them a minimum of 6 times a day (another physician said that's good and the studies are all for 6+ so I figure I'm good). When I'm out and about I use Refresh Plus or another preservative free vial. If I'm going to be out and about for a long period of time and it's convenient, I'll bring my serum drops with me in a Thermos with ice pack (I'll either wrap it in a scrap of towel or keep it in a shot glass to prevent freezing), see: http://www.dryeyezone.com/talk/showt...ighlight=serum

I do my best to use them as often as possible but I have to be realistic (something my former physician was not), I have a life to live and if I devote my entire life to my eyes, I end up depressed and worse than miserable. I try to find a balance between my eye needs and my life needs. It's not easy and some days it seems my life or my eyes suffer but hopefully, in time, I'll figure out the right balance ... at least until science finds something that will help me.

[irish eyes]

I aim to use them a minimum of 6 times a day (another physician said that's good and the studies are all for 6+ so I figure I'm good). When I'm out and about I use Refresh Plus or another preservative free vial. If I'm going to be out and about for a long period of time and it's convenient, I'll bring my serum drops with me in a Thermos with ice pack (I'll either wrap it in a scrap .........I do my best to use them as often as possible but I have to be realistic (something my former physician was not), I have a life to live and if I devote my entire life to my eyes, I end up depressed and worse than miserable. ........

When I first started using serum drops, I used them as often as I could. Once I started getting some relief (which wasn't long at all) I didn't mind the inconvenience too much. In the UK, manufactured serum is kept frozen until we need to use it so that adds to the inconvenience of it but I've managed to work round it - a few compromises here and there.

As you rightly say, we have lives to get on with and it's important to guard against the spiral of depression, if we feel it is looming. We are only human so it can be hard.

Good luck with the serum.

[Trac]

Would as often as you could be more than once an hour? I try to put the serum in every two hours, but sometimes I feel like I could use it more often to get more relief. The serum really seems to help the most of anything I have used.The extra vials stay frozen, do you freeze the vial that you are currently using?

[irish eyes]

When I first started using the serum, it probably was about once an hour although I couldn't always do this on the days that I worked. The eye discomfort caused me to wake up a lot during the night so I used that as an opportunity to saturate the eyes then as well.

I have serum made up every few months and it arrives at my house via courier - already frozen. The vials contain around 2 or 3 ml. I use a new one each day and then dispose of it.

I try to make sure that the one in use is kept in a cool place (such as the fridge) but I'm not always 100% diligent with this. You can buy little cases / pouches for storing drops if you are out and about but I haven't found them to be very practical. I just do my best!

I know I have mentioned this on the forum before but the initial results of the serum were quite dramatic - then it reached a plateau and stayed constant. The consultant reported favourably on the health of the cornea after I had been using the serum for 6 weeks or so.

I met with the consultant this morning for a routine appointment and we talked about the early days and how he could see that I had hit `rock bottom'. Things not perfect now but so much better than they were.

[Trac]

Thanks for the information on how often you used the serum. I have not read anything that says using too much of the serum is bad, but there are not a lot of studies on the serum. My doctor says since it is your own blood it would not be harmful. I am surprised how many people on this forum use serum, all of use together would probably make the biggest test they have to date. I feel that with all (most) of the medicine I take I feel better at first, then after a while I hit that plateau you are talking about and then when I have bad days I don't understand why they have gotten so bad again. Sometimes my eyes actually feel moist and still burn and feel raw, that is a new feeling, my eyes never use to feel moist. My vials of serum is suppose to last 7 days so I am pretty careful to keep them cool since I don't discard them until they are used up, sometimes 11 days. I do check for cloudiness. I have on occassion gone out and put the vial of serum in a ziplock bag with an icepack and put the whole thing in my purse. It works if I am not going to be out for very long.

Do you use other drops too and if so how long do you wait between different kinds of drops?

Thanks so much for your help.

[Rebecca Petris]

there are not a lot of studies on the serum.

Actually, there are a lot of studies on autologous serum eyedrops and the research goes back a decade or so.

[PotatoCakes]

Would as often as you could be more than once an hour? I try to put the serum in every two hours, but sometimes I feel like I could use it more often to get more relief. The serum really seems to help the most of anything I have used.The extra vials stay frozen, do you freeze the vial that you are currently using?

If I have my serum drops handy and need them more than once an hour, I use them as needed. I recently visited my parents for a week and they live in a very dry climate; as long as I was in their house (refrigerator), I was using serum drops and I used them a LOT. I brought a full bottle with me, which usually lasts about a week before I run out and I was really worried I'd run out before the end of our trip because I was using them so often. Depending on the day and environmental conditions, I can frequently go longer than an hour before needing my drops but if it's dry or during the winter, I use them constantly.

I freeze only the bottles that I'm not using. The bottle I'm using goes in the fridge. When it looks like it's running low, I'll take another bottle out of the freezer so it can thaw (I like to give it about an hour to be safe).

I was told that my opened drops can last longer than a week in the fridge; I can't remember exactly how long though -- maybe 3 weeks? Anyway, it's never been an issue since it takes me about a week per bottle.

[Trac]

Thanks!! I will increase the number of times I use them when my eyes bother me a lot. But they are by far the most expensive medication I pay for, $500 for 3 months worth. So I am glad that I can make them last longer than a week.

[irish eyes]

.......... Do you use other drops too and if so how long do you wait between different kinds of drops?

Yes I do. I am now able to use Genteal gel for severe dry eye - night time only. I am also able to use Oasis PF.

I cannot really say how long I wait between drops. I probably use drops every 2 to 3 hours so it's often a case of using (for example) serum at 10 am and Oasis tears at 12 noon. Having said that, I often forget what I have just used but try not to worry about it as long as my eyes have some moisture. I'm more relaxed now that my eyes have improved - and I would put that down to the serum.

Regarding studies on serum; yes there is plenty of data around. Several years ago, I was under the care of a consultant who was part of the development team. I remember him talking about autologous serum back in the 1990s so I know it was used back then. As I understand it, manufacturing methods in the UK differ from those in the US. It's costly to produce so it isn't suggested as a means of treatment until other things have been tried. Funding is on a case by case basis.

[mgshutterbug]

Where can I learn more about this?

Where can I learn more about this? I am in the market for a new corneal specialist, and I'd like to be able to present this as a new trial treatment (tx) regimen. I survive only by using moisture chamber rx glasses every waking moment, and Muro ointment at night. Even with that, and Muro drops, and Oasis, my eyes are always painful and dry. How expensive is it to get your 10-12 vials of serum at a compounding pharmacy if insurance won't cover it? I don't know if this is even feasible, because though I work hard to stay hydrated, my blood clots quickly when I've tried to give blood at Red Cross. Also, my veins are lousy.

[PotatoCakes]

Here's two really good posts about serum drops:
Finding a lab: http://www.dryeyezone.com/talk/showt...ighlight=serum
and
Serum 101 http://www.dryeyezone.com/talk/showt...ighlight=serum

I've always had problems giving blood because I'm terrified of needles so my veins frequently collapse when I'm stuck. That said, I've had really good luck getting draws for my drops because the nurse knows I'm freaked out and she plays Jedi mind tricks to make me feel more comfortable. If you do get them, definitely spend 2-3 days prior drinking a LOT Of water. There's a program I use on my iPhone called Water for your Body lite (it's the free version) that helps me track my water intake, or I just make sure I'm drinking enough to keep my pee clear. If it's not, I gulp a glass of water immediately and don't forget to carry a bottle of water with you, that will help you drink throughout the day. THe more hydrated you are, the easier it is to get a draw and the more serum they can get from your blood. I've had 3 draws so far (10 vials each) and the first time I got 10 bottles of drops, the 2nd I got 12 and this last time, he said I came really close to getting 13. This last time I spent 2 days of really good water consumption. Next time I'm committing myself to 3 really good days because I want that 13th bottle of serum drops!

Cost varies depending on how you get them. Mine cost less than Trac's but I get my blood draw and drops at the same place, locally. Trac first gets a blood draw at the dr's office which costs, and then has to send the blood to Leiter's to be made into drops and then back. Ideally, you can find someplace local or close to local because it will cost less.

[Hopeful2]

I just had serum drops made for the first time. The procedure the hospital here uses seems to be very different. I went to a Medical daycare departement and had the blood drawn. They draw a bag of blood, about 400 cc. They take the blood to the lab were it is spun in a centrifuge. Oh and they told me that sometimes the bag breaks and you end up with nothing. Anyway, I got about 45 vials of 3 ml, of straight serum.

I thought it would be more viscous, but it seemed quite thin. I was not told how often to use them, so I am assuming that I can use them as needed. I don't find them as lubricating as some of the drops. Does anyone know how the serum drops improve the surface of the eye?

[markdav]

How can I get serum drops in Canada(Toronto)

[Hopeful2]

Hi markdav,

I would suggest that you get an appointment with an opthalmologist at the Eye Clinic at the Western hospital. It sounds like there is a pretty impressive clinic there. I got my serum drops by seeing a specialist at the Ottawa Eye Institute at the Ottawa General. I suspect that the Western Hospital would have a similar program. A phone to the clinic might be a place to start. You might also contact the CNIB (Canadian Institute for the Blind), in Toronto. They might be able to make recommendations. Feel free to send me a PM if you would like additional details.

[irish eyes]

I thought it would be more viscous, but it seemed quite thin. I was not told how often to use them, so I am assuming that I can use them as needed. I don't find them as lubricating as some of the drops. Does anyone know how the serum drops improve the surface of the eye?

I expected the serum to be viscous too - I couldn't quite see how it would start out as blood and finish up as a clear liquid in a bottle.

Regarding your point about how the serum works - here is a link from the British Journal of Ophthalmology (dated 2004)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772389/