My Sjogren's has gotten exponentially worse in the past 18 months. (Don't have LASIK no matter what the doctor says!!!)
Anyway, OTC eye moisturizers aren't cutting it - including the thick goo stuff. I wake up in the night because my eyes are so dry.
Saw an opthamologist on Friday who said my options are 1) having my blood drawn and "serum" from my blood "watered down" to use as eyedrops. Sorry, but that option kinda grosses me out and doesn't offer much help if I'm not near the refrigerated drops....
2) having my tear ducts cauterized. I've had my ducts plugged and it seems to work ok but they are coming out frequently despite getting bigger sizes. It sounds painful and wondering if anyone has had it done - feedback and did it help?
Sorry for the long post... I think you will find all of my info helpful...Oh, by the way, my doctor told me that people with dry eyes, even the slightest bit, are NOT candidates for LASIK, so you are absolutely right about that.
I have NEVER heard of anybody using serum from blood as eyedrops. What on Earth would that do?? What could possibly be in your blood that would when used as an eyedrop, make the eyes less dry??? I have to ask my opthalmologist about that one, because now I am very curious! (hey, it sounds gross, but right now my eyes are soooooooooooooo irritated and itchy and DRY, I would be willing to try it myself if my doc said it would help!) I'll get back to you on that one....
As far as the cuaterizing goes, it's really not that bad. The reason I had mine done was because the plugs kept on falling out, and he tried bigger sizes but they hurt too much and were irritating my eyes. So, I know where you are coming from. Fun, isn't it?
Cuaterizing is for people like you and I, with severely dry eyes. I also wake up during the night with dry eyes, and I have them 24/7. I didn't know there was anybody else like me out there! I don't know about you, but I don't produce any of my own tears anymore, period! (well at least not the right kind, anyway!) Most doctors will only do the lower 2 ducts, but mine eventually had to do all 4 on me because because it got so severe. The theory behind cuaterizing is supposedly that even with plugs in the eyes, a small amount of tears can still escape around the plugs. Or, if like me, the plugs just don't stay in your eye anymore, you don't have much of a choice. With cuaterizing, scar tissue forms and closes off the tear duct permanently. It is reversable, according to my doctor, but only with another surgical procedure, whereas with the plugs, he can just pluck them right out.
So anyway, this is the procedure, basically:
In order to do it, your eyes have to be totally numb. Some doctors say that they don't need to bother numbing the patient's eye because it takes longer to numb it than it does to do the actual procedure. If yours tells you that, get up and walk out and never go back. My doctor, however, put it to me this way: "It may be a 30 second procedure, but that is 30 seconds that feels like you put your hand down on top of a hot stove, and there is no reason why a patient should be in pain for even a second". So first he should put in a drop or two of those oh-so-nice numbing drops. I tried to get mine to let me take them home with me, but he said no. Then after the eyeball is numb, he will (or at least, he should), put a tiny piece of cotton with more numbing drops on it, in the corner of each eye. You have to sit there for about 5 or 10 minutes with your eyes closed, while that is in. Your eyeball and lids should be pretty darn numb by then! Then, and this is actually the worst part of the whole thing, he will inject your eyelids (in the corner near the tear ducts) with novacaine. You will feel a pinch, and then a pretty strong burning sensation for a few seconds, and then your face, from the top of your cheekbones to the top of your eyelids, will be completely numb. When you are nice and numb, he'll then bring out the cuatery, and touch it to your tear duct and press and hold it for about 30 seconds or a minute. He will burn it until a scab forms and it is completely closed. Then he'll do the same on the other eye. The scab will eventually turn into scar tissue, and that's how it is cloed. You'll have to use an anti-biotic ointment for about 3 days. After the procedure, your eyes will be numb for probably an hour, hopefully longer. They will be very very puffy and swollen. When the novacaine wears off, your eyelids and possibly your eyes will burn a lot. Bring somebody with you, as your face will also feel very ehavy afterwards, from the novacaine, and you will not want to drive home. I suggest staying in for the rest of the day with cold compresses on your eyes. That will make it feel much better. By the next day, your eyes and lids should not really burn anymore. They will be noticably swollen and red and puffy for a week or so. They will be veyr sore to the touch, also for a week or so, maybe longer. Just keep using cold compresses (I live on them, along with tear drops). Having my ducts cuaterized did help me. I cannot say that it made my eyes feel much better, but it did help prevent me from getting any more abbreasions or ulcers in my eyes, which is the important thing. Also, you will probably (hopefully) find that you have an overflow of tears dripping down your face. I find that a tiny bit of vaseline on my cheeks helps to prevent irritation from that, and i just keep blotting!
Did your doctor also tell you that even though it is supposed to be permanent, it is possible for your tear duct to open up again, on its own? The human body is amazing. It realizes that there is supposed to be a hole there, and it opens it back up. It only happens in about 10% of patients though. It happened to me. I had to have one of mine redone.
Can I ask you a question? What tear drops do you use, and how many times a day do you put them in? I use Bion Tears, and I put them in 20-30 times a day. Occasionally they help, but I am looking for something better. Like I said, cuaterizing the tear ducts did help me a tiny bit with the dryness, because it helps to preserve whatever tears I do produce, but since that is not a lot, I need to still keep putting tear drops in.
Also, have you ever tried Cyclosporine (sp?) drops in the eye? Cyclosporine is a medication that is conventionally used in chemo therapy patients, to help reduce the size of their tumors. The theory behind using it in the eye is that if the tear glands are swollen like mine are, they won't produce as many tears. So it is supposed to bring down inflammation. In other words, it does the work of a steroid drop, but without any of the risk involved in using steroids. I have found that this also helps me a little bit. Right now, as far as I know, there is only one place in the country that makes it. It is called Leiters Park Avenue Pharmacy, and they are in San Jose, California. They will ship worldwide. Your doc would have to call it in, and then you would have to call them back with the payment and shipping info. Hope I have been of some help!
Let me know what happens with the cuaterization! (it is really not as bad as it sounds)
About the eyedrops - she gave me orders to get 5 tubes of blood drawn and told me to take it to a local pharmacy. They would separate the platelets/red blood from the clear liquid which has a lot of nutrients that are more soothing than the plain old OTC eyedrops. Has to be refrigerated at all times - which makes it rather difficult to take around with you. But, the doc thought it might be helpful to use at night.
The doc did tell me that sometimes it has to be redone up to 3 times b/c they keep regenerating themselves. She said that they only cauterize the top ducts. Granted, my bottom plugs have stayed in without any probs for 18 months now - the top ones keep coming out. Did you get both the top/bottom cauterized? (I cringe at the use of that word!)
I have a drawer full of different drops - none really seem to make any difference - but I use the gel/gooey ones at night. There's a new one out that the doc recommended that are "spray" ones. I haven't found them yet, but I'm keeping an eye out for them.
My rheumy nixed the cyclosporin drops. I don't recall him giving a reason why - but our appts are always "all over the place" subject-wise.
I'm actually looking into taking legal action against the doctor that did my LASIK. He's supposedly one of the "best" in the country but I guess the almighty $$$ rules.
Thanks for the detailed info!
[This message has been edited by scbagrrrl (edited 08-19-2002).]
The spray drops are called Tears Again Liposome Lid Spray. You spray them on the closed eyelid. the company that manufactures them is called Ocusoft.
Hmmm, I will have to bring up the blood thing to my opthamologist at our next appointment (which is actually in about 2 hours). Will any pharmacy do it, or does it have to be a special compounding pharmacy?? I mean, could I just bring this into Walgreens, or does it have to be a special place like this Leiter's Pharmacy, that I told you about in my last post?
Yes, I had to have both the upper and lower ducts cuaterized. First he did the lowers, and that did help a little bit. Then one of them opened up. I could tell because that eye got worse very rapidly. So I immediately went back to him, and he decided to re-do it. But I had to wait about 2 months to do it, because of some other things that were going on. Sometime in between there, he decided it would be beneficial to do the uppers as well. I had plugs in them, but they kept falling out, and we think that the upper plug in my right eye may have moved and irritated my eye, causing me to get an abbrasion on my cornea. So, he immediately removed it when he saw the abbrasion, and said that he would never ever put another plug in my eyes. He said it had never happened before, but with me, he wasn't taking any chances because I am so unique! So he did cuaterize all 3 at the same time. Both top ones were being done for the first time, and the lower right one had to be redone. He actually held the cuatery on that one for an extra long time, to make sure it wouldn't open up again. It really didn't cause me any extra pain to do 2 in one eye at the same time, because it wasn't like I had to get very many extra injections. It was actually better to do it that way and get all of the pain overwith at once, rather than having the uppers heal, and then having to go back for the lower one and go through the pain all over again. And besides, he was so wonderful when he did it. he has a fantastic bedside manner. The whole time, he was just whispering to me, telling me "it's ok, I'm almost done, this is going to hurt for a second, just relax and it will be over soon, etc..." I would say that I am VERY glad that I had this done, because even though my eyes are still very dry, I really do not know where I would be if I hadn't done it. At one point, I had 2 abbrasions in my right eye within 3 months, and one turned into an infected ulcer, because my eye got sooooo dry. I mean, like I said, it is permanent because it's not like a plug, which can just fall out, but it's not so permanent that it can't be reversed by the doctor if absolutely necessary. Although, from what I understand, that is a much more complicated procedure, but still done in office. Good luck with whatever you decide. Keep me posted.
P.S. You should see what my bathroom medicine cabinet looks like from all of the eye drops that I have gone through over the last year! It's like the pharmacy at an eye infirmary!
[This message has been edited by purple2067 (edited 08-19-2002).]
[This message has been edited by moderator2 (edited 08-23-2002).]
well i just got back from the opthalmologist a few hours ago. It seems that now on top of everything else, I have pink eye as well. UGH!!!! I need this like a whole in the head!! Sigh! I asked him about the blood thing, and he said he has heard of it. He said that doctors used that before cyclosporine was available, and it is only for very specific kinds of eye problems. He said that they take your blood and spin it out, separating the platelets from the red blood cells, and then making the platelets into an eyedrop. He recommends using the cyclosporine, because he says it should give the same results and is not as costly. Apparently the cuaterizing has helped me, even though i don't feel a great deal better. He says thay my corneas, which once looked absolutely horrible, now look "prisitine", and my eyes don't look so dry anymore. For a while, like I said, I had tears running down my cheeks, but now it seems that I don't have that so much anymore, because my tear glands have finally realized that the tears are not draining out of my eyes, so they don't need to produce so many tears anymore. It only took them a few months to realize that! I told my dr that my eyes really don't like him anymore because of everything he has done to them, and when I see him, my eyeballs want to run and hide! It's like they are telling me "oh no, not this guy again! weren't we just here last week! I thought we agreed not to come back for a while!" LOL (ok, so I think my eyeballs are talking to me, so what, I'm not crazy. http://www.healthboards.com/ubb/dizzy.gif) Anyway, let me know what happens with your eyes. Good luck,
P.S. no, I don't really think that my eyeballs are talking to me, and I am not really crazy! (well, maybe just a little)
I know what you mean about the medicine cabinet full of drops that didn't make the cut. I have learned to not buy any of them until I try out the opthamologist's samples. I keep them primarily so I can keep track of what hasn't worked.
You're correct about the "blood eyedrops". It still kinda gives me the willies. (But the whole concept of cauterizing does too). Your regular Walgreen's won't be able to do it, but there should be some basic compounding pharmacies in the area. I haven't gone to get it done yet. I'm holding out to finish sampling the other samples the doc gave me, in hopes that I find one that works.
Wouldn't the "eye lid spray" screw up any eye makeup? I might give it a shot for nighttime. I still have a bunch of ones to go through.
The doc said we'll wait until the plugs come out before doing the cauterizing. According to her, I'm going to be down one day, and then I'll be up and running.
Bummer about the pink eye! Hope you clear up quickly!
Thanks again for the honest feedback!
Well yeah, I guess the eyelid spray would mess up any eye make-up, but I have just stopped wearing that completely because I am afraid. Once in a blue moon I will put on a little eyeshadow, but mascara is absolutely out of the question. I mean, even before I had these eye problems, the mascara used to run and get into my eyes. Can you imagine if that would happen NOW??? No no no no no, not going there. About the pink eye, well that is thankfully going away. But you know, I have to laugh....I caught it from a friend of mine who was diagnosed with it by his family physician, but absolutely refused to use the anti-biotic drops prescribed for him. But I really didn't think I would catch it from him if i wasn't using the same facial towel that he was, or touching anything that he touched. I hung out with him last thursday and saturday. Anyway, his actually went away on its own. I on the other hand, was not taking any chances. The dr says to use the ocuflox 6x a day, I use it 6x a day. But the reason I have to laugh is cause when we went out, he actually said to me "can you drive, cause my eye is bothering me. I'm very depressed cause it doesn't stop itching. Do you know what that is like?" Excuse me???? He was talking to me like I had absolutely no idea what it was like to have an itchy eye. Ehhhhemmmmmm.... Hello???? http://www.healthboards.com/ubb/rolleyes.gif I just gave him a dirty look... LOL
You know, something else that just dawned on me is this: You've got sjogrens, right? So that means that even though they might get a little better, these eye problems are never going to completely go away (sigh, sadly enough). So you might have dry eyes for the rest of your life (as will I, unfortunately ). So the cuaterizing might be the best long-term solution, because you are not actually going to use these blood drops every single day for the rest of your life.
The cuaterizing, like I said, is really not that bad. I just like it because it is permanent (for the most part), and you don't have to worry about the plugs falling out, etc.... It hurts for a few days, but trust me, it is well worth it. My eye dr jokingly told me that I should tell all of my other doctors that he is so good that I didn't even feel it when he did it. LOL I should give him a good build up to everyone. Trust me, he didn't have to tell me that, cause I recommend him to anyone who will listen. I love him. (plus, he's only 30 yrs old, graduated from med school at the age of 23, and he is sooooooooooooooo adorable! Sigh, if only he weren't my doctor...)
He wouldn't do the blood thing for me because Cyclosporin is better (for me, at least). He said that they used to use that before cyclosporin was available. Cyclosporin kinda pushes the tear glands into producing more of your own natural tears, instead of just acting as a temporary moisturizer. I would say that I think it has helped me.
As long as you trust your doctor, and if you have exhausted all your other options, I would say to go for the cuaterizing.
I'll be seeing him friday for a follow-up for the pink eye, so keep your fingers crossed for me that it is all gone. And he wants me to see a colleague of his in september for a 2nd opinion, just to have another "set of eyes" look at my eyes, no pun intended. Just to make sure that he isn't missing anything. It was actually his idea, and it will really put my own mind at ease to know that this other dr agrees with him. And who knows, maybe he will have a new idea that we haven't thought of before.
Anyway, I'll keep you posted... good luck, keep in touch, let me know what you decide...
Yep, I have Sjogren's (along with SLE, RA, Raynauds and possibly Fibro). I was dx with SLE and Sjogren's about 3 years ago. I had worn contacts for 15 years with no problems of dryness - I had just tested positive for Sjogren's while they were dx-ing the SLE. I, stupidly, wanted to have LASIK on my eyes. Saw "the best" LASIK doctor in town. Discussed in detail with him about the procedure and my SLE and Sjogren's. He said since I had no probs wearing contacts, that the procedure would be no problem. NOT. Immediately after the surgery, my eyes dried up. Plugged them within a couple of days of the surgery. Has gotten worse and worse over the past 18 months. My rhuemy yelled at me for doing it - said that there has been evidence that LASIK aggravates Sjogren's and the LASIK doc should have known better than to treat me. So, I'm actually considering a lawsuit - the problem is that the doctor that did it is "the expert" on LASIK and works with all the malpractice atty's in town - so none of them can represent me.
Keep your hands clean! It's hard not to touch your eyes when you have that occasional tear running down your face! Hope you're recovering ok.
Thanks again for your feedback. I agree with you on the cauterizing - I might as well get it done, but it sounds horrible. I guess I'm a chicken. I'll need a couple of strong "chill pills" or shots of tequila before I could get in the chair for it!
You really sound like you have a good lawsuit there. I just hate these drs who think that because they are specialists they know everything. That really sucks that you can't find an attorney to represent you. Have you looked outside of your hometown? See that is one problem that I would never have, because my brother just took his bar exam and is working for one of the biggest law firms in the country. I would just be like "look dr know it all, my brother is an attorney with the law firm of blah blah, so and so and blah, so either pay up or go to court!" LOL!! And I'd win, too!!! These doctors, I swear, you wonder where some of them went to medical school. I mean for GOD's sake, the first thing my opthalmologist told me when he diagnosed me with dry eyes was "Elyse, you know you can never wear contacts again, and you can never have LASIK". I mean, if that is what a doctor makes his living doing, then he should KNOW BETTER!!! In hope you sue his butt off. Expert my foot. I hope they revoke your drs medical license. You know, I also have a little bit of a bone to pick too.
Way back in the summer of 2001, I decided to get contacts. I hated wearing glasses and I had no eye problems what-so-ever. (those were the days) So I thought, "why the heck shouldn't I get contacts?" So, I went to my opthalmologist (former), and got a prescription for them. Then I went into a lens store and got fitted for them by the optometrist. I thought I looked really great with them, but it was not to be. I was having trouble seeing with them in, and gee, for some reason, they never seemed to stay in my eyes for very long. Hmmmmm, I wonder why. So I went back and saw the optometrist about twice more, to make sure they were the right prescription and that they were in right. In all, I was examined by two or three optometrists, and one opthalmologist. I kept saying, "well don't you think there is something wrong if they won't stay in my eyes"?? "Oh, no no no, there's nothing wrong", is what I heard. "you just have to learn how to put them in the right way" So anyway, after they fell out while I was driving, for the hundredth time, I just decided to go back to my glasses. Surprise surprise, october of that year when I started having very itchy eyes, I saw a new opthalmologist (who i use now) and he told me within 2 seconds of looking in my eyes (without even having to stain them) that they were extremely dry, and i never should have worn contacts in the first place.
I mean, I know an optometrist is not an MD, but HELLO??? All the signs were there! I even asked my opthalmologist when I saw him for the first time, "why did my contacts keep falling out" and you know what his answer was "your eyes are too dry to hold them in. Contacts are supposed to float in a layer of tears, but since you have no tears in your eyes, there is nothing there for them to float in!!" Well now it all makes perfect sense!
Actually, there was one time after that when I did have to wear a contact in my right eye for about a month. I had a very very severe corneal ulcer (from dryness, sigh), which had gotten infected. I was on some of the strongest anti-biotic drops in the world, every half an hour around the clock for over a month. I literally did not sleep. If I didn't show him that I was using them, he was going to put me in the hospital. Finally, when the cornea did start to heal, just blinking the wrong way would reverse the healing and get scratch off any new layers of surface. So in order to protect the eyeball, I had to wear a soft contact lens for about a month. But, the dr was the one who put it in for me, and I was NOT ALLOWED to touch it myself! If it fell out, (which it did several times), I had to call him and get my butt back in there pronto for him to put in another one. But after that, he said "ok, now that we don't need it anymore, no more contacts for you, ever, your eyes are too dry". And what pisses me off is that none of these other eye drs that I had seen over the summer ever bothered to mention to me that my contacts might possibly be falling out because I was dry. They just kept telling me it was my fault for not putting them in right. UGH!!!
As far as the cuaterizing goes, a few shots of tequila might not be a bad idea!!! LOL. See, I didn't have that option when I had mine done the first time. I had an appointment to see him, and my eyes were still so dry despite all of the other treatments, so he said "ok, when do you want to have the cuaterization done" and I said "well we can do it whenever you are available", and he said "well how about right now?" and that was that. Into the chair I went, and out came the needles, etc... I figured that if I didn't do it then, I was going to loose the nerve! Then the second time around, I knew exactly what to expect and that he was very good and very gentle, so I wasn't scared at all. I actually told my dad to get out of the room because I didn't want anybody in there with me. It's really not so bad. Just take a few shots of tequila, maybe some vodka, and go get it done. (just don't drink and drive!) I mean, especially if you have all of those immune disorders, I think cuaterizing would be your best bet. And hey, if I could do it twice, it must not be that bad after all. I would get it done soon if I were you, because the sooner you do it, the sooner you will hoefully start to feel better.
I'm in Atlanta and we certainly have our share of atty's. I've spoken to 20+ attys that handle medical malpractice and all of them say that my doc did their own Lasik or he is their "expert witness". Not giving up.
Have you been dx'd with any other autoimmune disorders?
What, is this guy the only dr in Atlanta who does LASIK? It sounds like EVERYBODY goes to him. I just hope he doesn't screw everyobe else up like he did with you! He's going to drum up a lot of business for the opthalmologists in the area! I am sure that you have a lot of very fine attorneys in Atlanta, but have you thought about speaking to attorneys in surrounding areas, instead of just in Atlanta? Maybe you would have more luck finding one who doesn't know this guy! Another thing, he must know by npw that you want to sue him, especially if you have been speaking to all of these attorneys who know him personally. One of them probably tipped him off. It sounds like you are fighting an uphill battle. I mean the first part is to actually find an attorney who will take your case, and then you have to actually try to win this thing. It certainly sounds like this guy has enough friends in high places! You know what they say, it's not what you know, but who you know.
Have you decided about the cuaterizing yet? I am going back to the dr tomorrow about the pink eye. Right now my eyelids are burning the heck out of me, so I am kinda nervous, cause I really don't want to hear what he has to say! LOL I have not been diagnosed with any other autoimmune disorders, (well, I might have a touch of raynauds) because I haven't been tested. My sjogrens results were borderline, but based on all the physical evidence, my rheumy decided that I have it. I still haven't decided about taking the plaquenil. Another question that I have is this: Will my blood test results always stay the same, or will they change over time? I mean, if I were to have the sjogrens test repeated a month from now, would it still be the same, or can the results fluctuate? Can it sometimes be negative and sometimes be positive? If I didn't have almost all of the classic physical symptoms of sjogrens (body aches, dry eyes, dry nose, etc...) how would they know that I have it, if the blood results were just borderline? Should I get more blood tests (for other autoimmune disorders) or should I just wait and see what happens? This is the only thing that I am confused about.
[This message has been edited by purple2067 (edited 08-22-2002).]
[This message has been edited by purple2067 (edited 08-22-2002).]
hey scbagrrl, on the eye&vision board somebody posted a question about lasik surgery. Did you see it? People are giving the pros and cons of the surgery. It seems you aren't the only one with a bad experience. You might want to read that and post your own response.
This doctor is "the" doctor to have in town - he does a lot of the athletes, stars, etc... He's much more expensive than the others, but supposedly, he's the best. He's already been tipped off and he sent me a letter saying that my surgery went perfectly, blah blah blah. Responded back that although the surgery might have gone well, the aftermath certainly wasn't. When my eyes are "moist", I do have close to 20/20 vision - the problem is that most of the time, my eyes aren't moist.
And one of the main reasons I had it done was so that I wouldn't have to wear contacts when I scuba dive - salt water doesn't exactly moisturize the eyes and you can't exactly stop at 100ft underwater and put in eye drops...
A lot of people rave about Plaquenil - I have been taking it since October and personally haven't noticed any improvement. My rheumy said I would be a lot worse off if I stopped it. (I decided to stop it on my own a few weeks ago - don't notice any difference yet)
Bloodwork-wise, your results may show ups and downs - mine certainly does. I get blood done every month while they are investigating my fatigue - and honestly, I don't see any correlation b/w when I feel like doggie doo and my blood results - often they are fine when I feel like crap. If I were you, I'd want to get tested just to know - that way you can be on alert for problems should they occur - ie, kidney involvement or lung involvement.
A lot of women are "borderline" lupus for a period of several years before it really kicks in - but the thing about lupus is that it manifests itself differently for each person. I'm not sun-sensitive at all (I have a great tan thanks to all the time on the water). I just tend to get infections (usually bizarre ones) out of the blue. My friends are all saying that I'll probably end up with West Nile Virus - and, half-joking, it would probably happen to me. You might want to check out "the lupus book" at the library and read it. It's a fast read and can give you some feedback on the disease - see if it fits or not. It's a teal-green book.
When they were testing me for lupus 3 years ago, my lupus results were borderline, but the sjogren's were "off the charts" even though I had no problems at the time. The doctor couldn't believe that I was symptom-free. I drink water like a horse - I don't know how much that has helped keep me hydrated...
I'm going to do a little more research on the cauterizing, but I'm certainly leaning toward having it. I still have to wait for my plugs to come out (again) and find a slow time at work - maybe during the holidays. And, if I'm going to pursue things legally, it would probably be beneficial to get the atty's say on things...
Hope everything goes well with the doc today. I'm sorry your eyes are burning. Maybe there's something the doctor can recommend to help out with it.
For now I have decided against taking the plaquenil. There are no guarantees that it is going to make me any better, and I usually have weird side effects to medications. If there is a "rare" side effect that is only supposed to happen to .0000000000001% of the people taking the medication, I will be that person that it happens to. I've had in depth discussions with my opthalmologist and my internist and my rheumatologist about it, and they can't seem to agree on anything. The opthalmologist, whom I trust the most out of all of them, says that it is a really big decision to make, and if he were in my shoes he doesn't know what he would do. He also agrees that it might be best to just wait and see what happens, if my symptoms get any worse, before I decide to start taking it. So he doesn't think I should take it right now. My internist says he doesn't know. It might help, but then again it might not, and he doesn't know what kind of side effects I might get from it. So he isn't sure if he wants me to take it or not. The Rheumatologist is the only one who thinks I should definitely give it a try (of course, cause it was his idea in the first place!). His theory is I guess that this is the only possible treatment for it right now, and I came to him for help, so he wants to be able to help me. He didn't try to pressure me into taking it or anything though. But you know, these doctors can give me as much advice as they want, they are still not the ones who will have to take the medication every day and deal with any possible side effects. So for right now, I have opted to just wait and see what happens. I can always start taking it later.
Well, I just went to the eye dr today, and thankfully the pink eye is gone. He said "the eye doesn't look as angry as it did last time". LOL But I would not have known that if I hadn't gone to him, because my eyes are still just as itchy and burning regardless!!! So anyway, I told him about the very bad burning on the eyelids, and he just sat there shaking his head. The poor guy, he looked so sad when I told him I was actually feeling worse, not better. I almost didn't want to tell him (he's just so cute, I don't want to make him sad. ) But he decided that he needs to do something about this right now, so we are doing now what we were going to do right before he diagnosed me with pink eye... He took me off of the cyclosporin (just to see if that was possibly causing me to have the burning) and off of the Tobradex (cause that is part anti-biotic, and I don't need that), and he ordered the plain dexamethasone ointment for me from that place in california. He thinks that the dex. is helping me, but the Tobramycin in the Tobradex is irritating me. Plus, I have so much mucous in my eyes from my damn allergies and dryness, that my vision sometimes gets blurry from it (I'll be watching TV, and all of a sudden my eyes get cloudy, and thats when I know I have to go wipe the mucous away). You know, to the naked eye, my eyes look fine, except for the mucous. So people think I'm nuts when I say my eyes are all inflamed. But they should just look at it under a microscope, and then they'll see. So for now I have to just continue with the tear drops and the Lotemax until my new medicine gets here next week. Oh, and I get to go and see him again next thursday. Did I tell you that on sept 13 I am going to see one of his colleagues, just to get a second opinion? And then the two of them are going to put their heads together and come up with something for me. Ohh, and he'll probably give me some FML again next week when I go back. He just didn't want to change too much at once. So that's the latest update on my situation. I am waiting for somebody to come out with a miracle eyedrop that will just get rid of all of this.
It's too bad you can't find an attorney who also went to your doctor and had a bad experience. They all seem to love him! Do you know of any other patients in your area who have gone to him and had a bad outcome? Maybe you can get together with some other people.
So have you done the blood eyedrops yet? Jeez that gives me the creeps.... (but you know what? if it would help, i'd do it anyway).
Good luck Elyse
P.S. Thanx for the info about Lupus. The next time I see my internist or my rheumy, I am going to ask one of them to test me for it.
[This message has been edited by purple2067 (edited 08-23-2002).]
Yeah, my eye doc is pretty fabulous (to say the least), and I am glad to have found him. He is an absolute angel. I could rave on and on about him. And no, it doesn't hurt that he is so darn cute! It is just such a shame that you had such a horrible experience with yours. That must have really turned you off to drs in general. I hope you have a good one now. Is the doc that you are seeing now a corneal specialist? Because from what I now know, a corneal specialist is the best one to treat dry eyes. It really is so important to have a doctor that you can trust and talk to. And it is also important to have one that is up on the latest treatments and surgeries, which mine definitely is.
Have you reported the dr who did your lasik surgery to the state medical board? They should be investigating him too. I would think that at the very least it would be grounds for an investigation (unless they all had their surgery done by him too!!!). That just sucks that you are having so much trouble finding an atty.
I get so much mucous coming out of my eyes that sometimes I have trouble seeing. Today I was driving and one minute I was fine, and the next minute my eye was very blurry. I said "oh, mucous". I was stopped at a red light, and I had to pull down the mirror on my visor and find exactly where the mucous was in my eye, and pull it out. It comes out in one long string. Ugh!!! And of course, my eyelashes fall out and go into my eyes, so that makes it even worse. I try as hard as I can not to touch my eyes, but they are soooooo itchy that I can't help it. I actually found it to be very ironic that I had pink eye. NOBODY is more careful with their eyes than I am! I was so ****** off. I must wash my hands 20 times a day, and 3/4 of the times that I do rub, it really just blotting with a tissue. I am so careful. So how the heck did I of all people get pink eye????? My eyes are just so susceptible to infection I guess, that all it took was 2 seconds of being around an infected person. Incidentally, the friend who I caught it from told me that he went to an optometrist a week after his symptoms began, and this brilliant "dr" decided that since the redness was all gone, he never had pink eye, and it was an allergic reaction to something. http://www.healthboards.com/ubb/rolleyes.gif An allergic reaction with green crust and mucous. yeah, right. So my friend then called me and told me that he didn't have pink eye, which i told him he obviously DID. He then said that maybe my ophthalmologist didn't know what he was looking at, and maybe I just had an allergic reaction too. I don't think so. At that point I politely changed the subject, because I was at the point where I wanted to drive over to my friend's house and smack him.
Have you ever asked exactly why your dr thinks that the blood eye drops are better than the cyclosporin? I'd be curious to know. Mine thinks just the opposite is true. You know, another thing that I'm wondering about is this: are people with immune disorders like sjogrens more susceptible to things? Because that could be the reason right there why I caught the pink eye from him and none of our other friends caught it.
Anyway, good luck, keep me posted. I'm dying to know what you decide about the cuaterization!
Since Sjogren's is an autoimmune disorder, which means that our immune system is out of whack and attacking itself, I would assume that your eyes have diminished immunity. Also, without great tearing function, your eyes aren't able to wash out bad stuff and protect the eye as well. (Granted, I'm not a doctor - and the info on Sjogren's on the web/in books is fairly limited).
My rheumy doc nixed the Cyclosporin and I don't think he gave a particular reason why. I think we got sidetracked about other stuff. I'm not super-thrilled with him, and he's no longer on my insurance. I'm going to be on a new insurance plan soon, and hopefully another doctor that I want to see will be on the plan. I'm not seeing a corneal specialist - was just a regular opthamologist. I'll pursue trying to see one of those once I get the insurance changed - no point in going thru the referral process twice!
And honestly, despite the Lasik doctor and a herd of rheumatologists, I'm pretty happy with my doctors - I have an awesome endocrinologist and internist. I'm rather "involved" in my care and question my doctors a lot, which some seem to have a problem with. I have freaked them out sometimes with the detailed information I have. I insist on getting copies of all my bloodwork and understanding what it says. I'm not just going to blindly take a medicine. And, if I think I'm being patronized or blown off, I am known to object. I take as much time as needed for my appt.
(Maybe it has something to do with being a (spoiled) only child!
Gotta run - hope you are feeling better and have a great week.
I don't blame you for wanting to get copies of everything and for asking as many questions as you possibly can. You should see the lists of questions that I bring with me to my drs offices. The way I feel is that if I (or my insurance company) am paying for this appointment, I should be able to ask all the damn questions I please! When I see my allergist, I pay for it myself, out of pocket because my insurance company only covers a certain amount of visits per year. With him, or any dr, I make sure I get my money's worth. If I have a question, I am not letting them leave that room. Or if I forget, they will get a call from me that night! They'll be about to get up and walk out to go to the next patient, and I'll be like "wait wait wait, I wasn't done yet!" LOL! Like I said, my opthalmologist is totally wonderful, and he will spend an hour with me if I need to ask him questions. Or he'll tell me "I can't talk right now because I've got to run, but call me later and we'll talk and you can ask me whatever you want". Once I was on the phone with him for 45 minutes (and this was at like 10:00 at night) I would not just blindly take a medication either. (i.e. the plaquenil). I like to know everything I possibly can before I start using something. I hate those doctors who tell you basically "I'm too busy for you now, don't bother me". I think it is great that you are so pro-active in your care. I am too. I don't think that the doctors are GOD (well except maybe my eye dr. just kidding). Anybody who just blindly listens to their dr is in for a rude awakening.
I think you are right about the sjogrens making me morse susceptible to infections. If the immune system is compromised, I guess it would make sense. The same thing with the eyes. Not only am I unable to fight off infection because of the immune system, but also because of the dryness and the bacteria not getting flushed out (although you would think that with all the tears I use during the day it would all be gone.)
Anyway, I think I have something in my eye (hopefully just mucous...here we go again), so I am gonna go look at it and then flush it out with tears. Good luck,
Hi scbagrrl, thanks for asking about me. How are you doing? Have you found an attorney? What about in the rest of the state, besides atlanta?
Well fortunately there was nothing in my eye after my last post, probably just some of that pesky mucous. At the moment, no, my eyes do not feel any better. Over the last few days they have not been too bad, but for some reason today they are dryer than they have been over the last few weeks (the total amount of disposable tears I have used today is up to 16 vials). And for some reason they are both much redder than usual today. I think it's cause I'm rubbing too much. Then again, nah, not me. I don't rub. Who, me?? But I am seeing my doctor (dr cutie pie ) on thursday, so I will know then. Right now we are doing an experiment. He's got me using patanol only in one eye, and then he is going to compare the way that eye looks to the way the other one looks, and see if he thinks it is making a difference and if I should continue to use it or not. I tell ya, the things that this guy comes up with.... LOL! And now I am also using FML in both eyes 3x a day. That is the ONLY thing that actually gives me some relief from the itching (well, it doesn't go away, but it just takes the edge off of it so it is bearable). FML is my new best friend. But the only thing is that while I am on it, I have to get checked by him more often, because if I get any sort of scratch, which I am prone to, I have to come off of it right away.
So that's my latest tale of woe. How are you doing? How is the dryness and all of your other symptoms?
Have you found anything to help with the itching yet? Did you have the guts to try those blood drops???
Have you decided anything about the cuaterizing yet?
You know, do your eyes ever water but still feel dry??? Mine do all the time. He says it is because even though I have an excessive amount of tears, from the cuaterization, they are still not the RIGHT KIND of tears, so my eyes don't really feel less dry. UGH UGH UGH!!!! I HATE THIS!!!!
You know, my doc also told me that in about a year they are supposed to be coming out with a new kind of prescription eye drop that makes you produce the RIGHT kind of tears. At least he thinks this is what he heard. Supposedly they just got through with the clinical trials (somewhere in NC) and are awaiting FDA approval, if it will happen. Wouldn't that be a wonderful thing?? I'm not counting on it though, cause who knows when and if it will be commercially available.
What I want to know is, howcome nobody told me and you about this study when it was going on?? I would have been on the next flight to NC!!
Anyway, I hope you are feeling better. Pray for me that I don't have pink eye again (that's what the redness and extra itching seems to indicate, but we'll just have to wait and see). Please keep me updated on how you are doing, and thanks for asking how I am feeling. It's nice to know that there are people who care and can sympathize.