are there side effects from blood serum? new dr. is saying there is

[jenny2008]

my old doc (who retired) was fine with me using 50% serum.. well i wanted to try 100%-now i go to his colleague.. he refuses to prescribe any 50% and started rambling off side effects like

scleral vasvulitis and melting in RA patients
immune complex deposition with 100% serum
peripheral corneal infiltrate and ulcer
inc discomfort or epithelipathy
microbial keratitis
bacterial conjunctivitis
eyelid eczema

anyway i am going to try and find his source. im sure this is all true but what are the changes ? 1%??? if he is this cautious i think i better find a dif doc!!! yikes ..i went through this years ago

just curiuos if anyone has heard of side effects?

[Faith1989]

As you know I am on 100%, and all I have noticed is that when I use it, a lot of the redness fades. HOWEVER I have also noticed that my lids are starting to hurt..now I am not sure if the bleph is acting up, or if it is the serum... I dont have any eczema.. My corneal specialist said that he only thinks the 100% will really make any difference and doesn't believe in diluting it. Every doctor believes different things so its hard when you have seen a few which most of us have... sigh

[PotatoCakes]

This may be the article your doctor is referencing:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772389/

The excerpt that mentions the risks:
Complications

The number of complications in the 255 patients reported to have been treated with serum eye drops is small. Most authors report no complications at all. Fox et al reported no serious complications,1 but mentioned that other users had encountered scleral vasculitis and melting in patients with rheumatoid arthritis. Immune complex deposition after hourly application of 100% serum and one peripheral corneal infiltrate and ulcer within 24 hours after initiation of serum drops have been reported.33,47 Circulating antibodies which are present in serum eye drops and antibodies in the cornea could theoretically form such immune complex deposits in the peripheral cornea and induce an inflammatory response. In five patients with dry eyes, discomfort or epitheliopathy increased with the use of serum eye drops and three patients with an epithelial defect developed a microbial keratitis. A temporary bacterial conjunctivitis was reported in a total of five cases and eyelid eczema in two.35,36,38 However, these complications could also have occurred in the natural course of the disease because of other risk factors such as presence of rheumatoid arthritis, remaining suture material, tear deficiency, and use of bandage contact lenses.

My understanding is that the risks are small and rare and may be tied to other risk factors and even unrelated to the drops (see line: However, these complications could also have occurred in the natural course of the disease ...).

I chose to up my % from 50 to 75 because of expiration date concerns and increased winter dryness. Here are two posts about it:
http://www.dryeyezone.com/talk/showt...ht=serum+75%25 (expiration date)
and
http://www.dryeyezone.com/talk/showt...atocakes+serum (percentage)

I don't regret my decision to increase my percentage and I think I'll stick with 75% vs increasing to 100 or decreasing back to 50%, at least for now.

I agree with Faith1989, every doctor has different beliefs about these things. Studies show that there are physical benefits to serum drops and I believe they have helped me immensely. Still, ultimately, a lot of medicine and results are mental -- if you don't think they are helping you, they won't be as impactful as if you feel they do help you. Our mental state has a huge impact on our health. That's why it's so important, IMO, for people who have chronic diseases to watch out for depression and feelings of helplessness and get help if we find we've fallen into a hole we can't get out of. We can't just look for physical healing, we need to take care of our mental health too. For some, that's exercise, being proactive, focusing on other activities or missions, religion, acupuncture, etc, for some, that means seeing a counselor or other help.

[jenny2008]

i agree wtih u both also.. andi think my doc freaks over the littlest things.. the other doc who was above him retired-he was wiling to let me try what i wanted.
here is the article my doc is referencing..they called me back to tell me..i may make an apt in a few weeks with another opthamologist and get his take..

[url]http://www.revoptom.com/content/d/dry_eye/c/33139/[

potatocakes.. yes similiar article..

do the serum drops help both of u make more tears or just help the redness of the eye?? my right eye is so dry but not red..just not many tears from sjogrens... i really wanted to try the 100% for 3 months and if it didnt help then i would know ive tried serum over 9 months and there u have it...

also i am on wellbutrin and do go to counseling. i am not ashamed..plus weekly mass does help... i totally agree with u.. im just kinda pissed at my doc now! my good doc leaves and the new one tries to take everything away..this happened to me 2 years ago with dif eye docs in a dif city.. im not freaking out just deciding what to do! i too thought the side effects were so low! on the phone he acted like it could happen to almost anyone...

[Faith1989]

Jenny u don't have any redness? That's lucky.. The serum does help with the dryness somewhat.. I was hoping for more of an impact though.. Right now my main concern is the inflammation in my eyelids, I swear if I didn't have the MGD and just the dry eye I could handle it. The MGD for me is what makes my condition painful. myabe try upping it to 75 percent? I usually use the serum 8 times per day, somedays more depending on what I am doing and how the weather is. The colder it is outside the worse the MGD gets.. I CANNOT wait for summer, stupid Canada lol

[Guest]

and started rambling off side effects like

scleral vasvulitis and melting in RA patients
immune complex deposition with 100% serum
peripheral corneal infiltrate and ulcer
inc discomfort or epithelipathy
microbial keratitis
bacterial conjunctivitis
eyelid eczema

anyway i am going to try and find his source. im sure this is all true but what are the changes ? 1%??? if he is this cautious i think i better find a dif doc!!! yikes ..i went through this years ago

just curiuos if anyone has heard of side effects?

(numbers taken from the article you posted a link to Jenny http://www.revoptom.com/content/d/dry_eye/c/33139/ )

re: microbial keratitis - 2 cases reported when bottles were used for a week at a time (out of 255 patients) - so, again, risk is low, AND, since bacterial numbers get higher and higher over time, you can lower this risk further by using bottles for no more than 3-4 days for example (less time for bacteria to multiply therefore lower risk of infection compared to using a bottle for a full week).

re: bacterial conjuntivitis - was temporary, and only 5 patients out of 255 - furthermore, people get bacterial conjunctivitis from other causes too... did the study control for this? if not, there is non way of knowing how many cases of this were due to the serum, and how many were due to other causes.

The microbial keratitis and conjunctivitis are basically just concerns related to possible microbial contamination of the serum itself - as long as the pharmacy makes them properly, you store them properly, you have a small enough amount in each bottle that you switch bottles frequently, you don't touch the dropper tip or inside of the cap EVER, odds are you'll be just fine. I don't see how it would make any difference whether or not you have 100% or 20% serum for example, unless bacteria grow better in the 100%... but even so, if you take appropriate precautions, I think the risks are low

re: eyelid eczema

To me, no big deal - try it and if you have a problem, stop. It's not like eyelid eczema from serum drops is likely to be irreversible and horrendously awful... as if you wouldn't notice a problem and stop the serum long before it got to that point, right? Besides that, they say that this only occurred in 2 out of 255 patients in their study, so it only affected a miniscule number of patients, and they state that they don't know for sure if the eczema was even due to the serum.

As for the others:
1) scleral vasvulitis and melting in RA patients
2) immune complex deposition with 100% serum (Can this not be monitored for by the dr., and the drops discontinued if it occurs? also note that no numbers were given.. how many patients did this happen to? would be nice to know in order to assess risk...)
3) peripheral corneal infiltrate and ulcer
4) inc discomfort or epithelipathy

I'd like to know if they had a placebo group of patients so they'd know how many people were affected by these complications in the placebo group, and how many patients were affected in the serum group. Furthermore, if they had a placebo group, were they equivalent to the serum group in terms of other eyedrops being used, severity of eye disease, and any other factors that would be relevant.

Not trying to say serum doesn't have risks, but it peeves me off and strikes me as lazy researching if a dr. says not to use higher doses of serum based merely on mentions of possible complications in a paper like that one that is so low on details. Did he read the actual study? or just that article?

Anyhow, I'm obviously biased towards thinking the potential upsides to experimenting with higher concentrations of serum outweigh the risks, since I use 100% serum and am happy with it (using 4 times daily since summer 2010)... but as with anything, you have to look at the likelihood of irreversible risks vs. the potential benefit and then figure out if it's worth the risk to you. Sometimes you gamble and lose... but other times you gamble and win...

[DCRdryeye]

Many eye docs are way too conservative, and deny you teatment that could really assist. Besides we've tried most of what's available and they should know that. Simply go elsewhere.

[jenny2008]

SAAG it peeves me too! so much that yeah!! i am going to a new doc Monday!!! I went to him in NOvemember... he is a young one but is an opthamologist ..graduated from the IU school of medicine (very good medical school)..and they told me onthe phone if i want to go to a more seasoned opthamologist there are 2 more i can choose from and they express the glands!! I am taking in the stuff my doc told me about to get his opinion. i iwll report back.. I was laughing too when i read the 2 out of 255 had problems..that is less than 1% .. my gosh ..most meds i take have way higher risks than that....
thanks everybody...wil keep u posted.... ))

(numbers taken from the article you posted a link to Jenny http://www.revoptom.com/content/d/dry_eye/c/33139/ )

re: microbial keratitis - 2 cases reported when bottles were used for a week at a time (out of 255 patients) - so, again, risk is low, AND, since bacterial numbers get higher and higher over time, you can lower this risk further by using bottles for no more than 3-4 days for example (less time for bacteria to multiply therefore lower risk of infection compared to using a bottle for a full week).

re: bacterial conjuntivitis - was temporary, and only 5 patients out of 255 - furthermore, people get bacterial conjunctivitis from other causes too... did the study control for this? if not, there is non way of knowing how many cases of this were due to the serum, and how many were due to other causes.

The microbial keratitis and conjunctivitis are basically just concerns related to possible microbial contamination of the serum itself - as long as the pharmacy makes them properly, you store them properly, you have a small enough amount in each bottle that you switch bottles frequently, you don't touch the dropper tip or inside of the cap EVER, odds are you'll be just fine. I don't see how it would make any difference whether or not you have 100% or 20% serum for example, unless bacteria grow better in the 100%... but even so, if you take appropriate precautions, I think the risks are low

re: eyelid eczema

To me, no big deal - try it and if you have a problem, stop. It's not like eyelid eczema from serum drops is likely to be irreversible and horrendously awful... as if you wouldn't notice a problem and stop the serum long before it got to that point, right? Besides that, they say that this only occurred in 2 out of 255 patients in their study, so it only affected a miniscule number of patients, and they state that they don't know for sure if the eczema was even due to the serum.

As for the others:
1) scleral vasvulitis and melting in RA patients
2) immune complex deposition with 100% serum (Can this not be monitored for by the dr., and the drops discontinued if it occurs? also note that no numbers were given.. how many patients did this happen to? would be nice to know in order to assess risk...)
3) peripheral corneal infiltrate and ulcer
4) inc discomfort or epithelipathy

I'd like to know if they had a placebo group of patients so they'd know how many people were affected by these complications in the placebo group, and how many patients were affected in the serum group. Furthermore, if they had a placebo group, were they equivalent to the serum group in terms of other eyedrops being used, severity of eye disease, and any other factors that would be relevant.

Not trying to say serum doesn't have risks, but it peeves me off and strikes me as lazy researching if a dr. says not to use higher doses of serum based merely on mentions of possible complications in a paper like that one that is so low on details. Did he read the actual study? or just that article?

Anyhow, I'm obviously biased towards thinking the potential upsides to experimenting with higher concentrations of serum outweigh the risks, since I use 100% serum and am happy with it (using 4 times daily since summer 2010)... but as with anything, you have to look at the likelihood of irreversible risks vs. the potential benefit and then figure out if it's worth the risk to you. Sometimes you gamble and lose... but other times you gamble and win...

[jenny2008]

the only bad thing it said was the immune complex disposition--it said with using it every hour.. who uses it every hour? i dont.. i cant . i use too many other preservative free drops and its a pain at times!!! and as far as him reading the article or study i have no clue.. hence new doc mon..wish me luck gals/guys... thanks for ur support.

(numbers taken from the article you posted a link to Jenny http://www.revoptom.com/content/d/dry_eye/c/33139/ )

re: microbial keratitis - 2 cases reported when bottles were used for a week at a time (out of 255 patients) - so, again, risk is low, AND, since bacterial numbers get higher and higher over time, you can lower this risk further by using bottles for no more than 3-4 days for example (less time for bacteria to multiply therefore lower risk of infection compared to using a bottle for a full week).

re: bacterial conjuntivitis - was temporary, and only 5 patients out of 255 - furthermore, people get bacterial conjunctivitis from other causes too... did the study control for this? if not, there is non way of knowing how many cases of this were due to the serum, and how many were due to other causes.

The microbial keratitis and conjunctivitis are basically just concerns related to possible microbial contamination of the serum itself - as long as the pharmacy makes them properly, you store them properly, you have a small enough amount in each bottle that you switch bottles frequently, you don't touch the dropper tip or inside of the cap EVER, odds are you'll be just fine. I don't see how it would make any difference whether or not you have 100% or 20% serum for example, unless bacteria grow better in the 100%... but even so, if you take appropriate precautions, I think the risks are low

re: eyelid eczema

To me, no big deal - try it and if you have a problem, stop. It's not like eyelid eczema from serum drops is likely to be irreversible and horrendously awful... as if you wouldn't notice a problem and stop the serum long before it got to that point, right? Besides that, they say that this only occurred in 2 out of 255 patients in their study, so it only affected a miniscule number of patients, and they state that they don't know for sure if the eczema was even due to the serum.

As for the others:
1) scleral vasvulitis and melting in RA patients
2) immune complex deposition with 100% serum (Can this not be monitored for by the dr., and the drops discontinued if it occurs? also note that no numbers were given.. how many patients did this happen to? would be nice to know in order to assess risk...)
3) peripheral corneal infiltrate and ulcer
4) inc discomfort or epithelipathy

I'd like to know if they had a placebo group of patients so they'd know how many people were affected by these complications in the placebo group, and how many patients were affected in the serum group. Furthermore, if they had a placebo group, were they equivalent to the serum group in terms of other eyedrops being used, severity of eye disease, and any other factors that would be relevant.

Not trying to say serum doesn't have risks, but it peeves me off and strikes me as lazy researching if a dr. says not to use higher doses of serum based merely on mentions of possible complications in a paper like that one that is so low on details. Did he read the actual study? or just that article?

Anyhow, I'm obviously biased towards thinking the potential upsides to experimenting with higher concentrations of serum outweigh the risks, since I use 100% serum and am happy with it (using 4 times daily since summer 2010)... but as with anything, you have to look at the likelihood of irreversible risks vs. the potential benefit and then figure out if it's worth the risk to you. Sometimes you gamble and lose... but other times you gamble and win...

[Guest]

the only bad thing it said was the immune complex disposition--it said with using it every hour.. who uses it every hour?

An excellent point. A risk of immune complex disposition with serum used every hour may not even be relevant to someone who uses it only 4 times per day.

On the other hand, maybe it is... but no way of knowing unless they do a study to compare the every hour group to the 4 times daily group of patients. In the absence of a study, all we can do is go with our gut... my gut is happy with the assumption that the every hour group is probably waaaaaaay more likely to run into complications like that than the 4 times daily people... (granted I could be wrong, but in the absence of hard evidence, we have no choice but to make an educated guess, right?)

Anyhow, happy for you that you have a new dr. to see... hopefully they will be more open to the use of serum drops. Good luck at your appointment!!

[farmgirl]

OMG if a Dr. is going to refuse to prescribe based on possible complications, however remote, they would never prescribe anything. At least the complications don't list possible death as with most every pharmaceutical out there!!!...F/G

[jenny2008]

u got it... that is so what im afraid of!!!! )))

OMG if a Dr. is going to refuse to prescribe based on possible complications, however remote, they would never prescribe anything. At least the complications don't list possible death as with most every pharmaceutical out there!!!...F/G

[No tears in ATL]

Hey guys! My life has been crazy so I haven't tuned in to the threads but you must have been reading my mind. I would like to go up to the 75% or 100% because my eyes react funny to the saline in the drops by getting really red and veiny. It sounds weird but it seems like there are salt deposits left on my lids after I use them. Going to finish up this last batch and see if I can convince doc.

Word of caution though. I have been keeping my drops in the fridge at work (near the back of the fridge where I thought they'd be safe). We've had lots of catering and such being delivered and stuff is being crammed in the fridge and shuffled around constantly which means that the door to the fridge gets opened frequently. Is it coincidence that I think I have an inflamed tear duct now from using my serum drops? I wonder if the lowered temp in the fridge caused a bacteria buildup. Gotta keep those in my iced thermos from now on I guess. Eye feels bruised in that area and I see a red puffy area just below.

Didn't mean to hijack Jenny, but I think your situation is helpful so I can convince my doc is well. Hope you are feeling somewhat better these days.

[Faith1989]

I am having a slight reaction to the serum to, maybe? I mean when I put my serum in, my eyes look shiny and "whiter" however my right eyelid gets kinda red. Now before I got my serum, my lids would get red and inflamed from time to time. This would usually only last a week, then it would go away. This time it has been over a month! I am unsure id the serum has anything to do with it or its just the blepharitis acting up lol ...serum can be iffy in some cases, but for the most part they are totally safe and I do like mine (although I hope it's not what is bugging my lids) I am getting silicone plugs Wednesday as I haven't tried plugging my ducts yet. I've heard mixed reviews and am not expecting a lot of relief, but holy are they ever expensive!!!

[PotatoCakes]

I use my drops on the hour if I'm at home or having a particularly bad day. My first doctor prescribed them to me that way (at 50% potency). No problems then and no problems since I've gone up to 75%.