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Restasis vs. Serum..your experience, need advice :)

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  • farmgirl
    replied
    Sorry Faith, didn't notice this and we have talked but for anyone else interested I get it from Script Pharmacy in Calgary and Max i don't know who that so called 'specalist' was that you saw at Duke University but it it obvious to me that he knows very little about dry eye. I have been using serum drops since March when I read about them on this forum and know that like insulin is to a diabetic I will probably never be without them. I am currently out and have been for a couple of weeks and can't wait to get some more. I recommend Max that you find a new doctor, preferably someone not so knowledgeable lol...cheers...F/G

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  • Katewest
    replied
    I was only on it for about a month and a half. They made my eyes a lot redder. After stopping they went back to their usual red veins.

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  • Faith1989
    replied
    has anyone had restasis increase redness/flare-ups after a few months? After stopping did the redness fade?

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  • Katewest
    replied
    Are Jupiter lenses like prose?

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  • Max
    replied
    Originally posted by Faith1989 View Post
    Hey everyone so I at the end of month 2 with Restasis + Lotemax... and although the Lotemax makes me feel great, the Restasis is killing me. I got a referral to a corneal specialist in Ottawa who has the ability to prescribe serum. (I should also mention i'm on 100 mg of doxy daily) I want to try the cautary and the serum, as a new approach to my problem as I feel I am needed a more serious approach. For people who are on serum, has it worked for you? Better than restasis? Any help at all would be appreciated!
    If by "serum" you are talking about extracting it from blood samples, I was sent to a specialist at Duke University after restasis failed and actually made my eyes worse.

    At first he told me to bring a bottle and eyedropper purchased from a pharmacy and that on my next visit we'd start the process. I came back and he acted like I was crazy. He said serum can only be used for a very short time, doesn't work well for acute dry eye syndrome when there is atrophy of glands, and can cause infections.

    I've been on various steroid drops with no results and my eyes feel as if they have glass shards in them 24/7. I was on Lacreserts but they help only for a short time.

    I am now being fitted (fourth attempt) for Jupiter lenses. I came here to ask if there was anyone who knew of a more accurate method of measuring
    the eye other than just guesswork. A digital scientific instrument?

    The Jupiters would be a miracle for me if they could be properly fitted. They come as close to feeling normal as I've felt since before Lasik surgery three years ago.

    That was my question. Medical equipment to measure and properly fit lenses instead of eyeballing it (no pun intended but my optometrist makes drawings to try to show the company what problems are occurring).

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  • Faith1989
    replied
    Farmgirl PM me if you dont want to disclose that information on here The specialist I am going to is in Ottawa Ontario at the Ottawa General Hospital.

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  • Faith1989
    replied
    I am going to a specialist in two weeks to ask for serum...I tested negative for Sjogrens but really hope he still gives it to me. I have blepharitis and dry eye but lots of surface inflammation in my right eye.. I am using Restasis twice daily and lotemax in the morning.. I am from Canada to, can I ask where you got the serum??

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  • farmgirl
    replied
    Hi Faith: Like Saag, I use both restasis and eye serum as they do completely different things. The restasis stings for sure and I don't like it but it does help in my case (Sjogren's) Apparently it often doesn't make a difference but you have to use it for 6 months to know that. I am sure it does no harm if it doesn't help. The serum has helped reduce the redness although they will never be 'white' I am sure. I have found the health of my corneas much improved with the serum. If I had to choose based on $$$ for sure I would stay with the serum (50%). Hope this helps...cheers...F/G

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  • Faith1989
    replied
    Oh I have been also told to get a therapist, and that most of this is "in my head." How is it in my head when my TBUT is almost nothing and my tear production is like at 3 in one eye?? lol I wish I would of said that but I asked for a referral to someone who I heard is "the person to see in Canada for ocular surface disease." He has won countless awards and I really hope he lives up to his reputation when I go there in two weeks! My blepharitis is in remission (for now lol) due to doxy..which has really helped me. I really do need something more for the surface of my eye though as it is constantly inflammed and burning.. as of rn I am using Lotemax in the morning + Restasis, then doxy, then later in the day I sometimes put Alrex in depending on if I need it. What I really want to do is ADD serum and plugs.. hopefully he thinks this is the next step too. As for the anti-depressant... anti-depressants can make ur dry eye worse depending on the type, so for now I'm staying away from anything that will make it worse. I have also been REALLY TRYING to cut wheat out of my diet along with other inflammatory foods. I am sorry you have had bad experiences with doctors, I think we all have. At least you can always ask for a referral lol if they wont help you ask them to send you to someone who can!

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  • DCRdryeye
    replied
    Been following your posts and can relate to what you're saying. I have Restasis compounded for me here in Australia and we call it "cyclosporine drops". It's the only way we can obtain it because it's not a listed drug here. I recently discovered it does not contain castor oil, but I can certainly still feel it sting when applying it. My eyes sometimes go red after applying it, so it's definately an irritant. However, I've only been on it for 5 months and want to keep trying for at least 12 months. I believe it takes time to work.

    I've also tried scleral lenses and obtained a very good fit. However, my driest eye (the left) still gets painful, even with the scleral lens on. So I'm disappointed they weren't the "holy grail" they were made out to be with all the hype about them. So my goal now is to continue to try and increase tear production and work on MGD (I have both lack of tears and MGD). I've been avoiding cautery despite many eye doctors recommending it. My next thing to try is hormone eyelid cream and obtaining that in Australia is next to impossible, but I have sneaky little way of getting them

    I totally agree with your statement about doctors not taking "dry eye" seriously enough. In fact, not even ophthalmologists believe it causes so much trouble in our lives. Recently I saw an ophthalmologist who said my eye pain was all in my head and I should see a psychiatrist for anxiety. I attempted to tell him that it's the other way around - IT'S THE EYE PAIN THAT CAUSES THE ANXIETY. And indeed, anxiety and all the restrictions eye pain causes in our lives can lead to depression. I wrote an account of my experience with this arrogant eye doctor and put it online with the intent of having others explain similar experiences. Please have a look at it here: http://www.blockedtearductsurgeryadult.com/?p=91 and feel free to add any of your experiences, or even to write a note or two if you agree about the degree to which dry eye is dismissed by doctors.

    Faith - I was curious about how you believe increasing the dose of your antidepressant will make you worse? How will it make you worse? Will it make your eyes drier?

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  • Katewest
    replied
    Look on here about Prose lenses...its sounds kind of like a last resort and they only have about 5 places in the US that do them. Since the Restasis doesn't seem to help that many people I would not feel that bad about stopping. Another DEZ user told me to get the Restasis from a compound pharmacy and have them take out the castor oil. I know what you mean about doctors not getting it. I am ready to quit my job, think about my eyes 24/7, and the Dr says to keep on the Restasis or try try warm compresses. I am beyond that. When are your eyes at there worst? Mine is def at work...office, lights, ac, ect. But the worst part is the anxiety I have about the redness and dryness. Thats why I think the Zoloft will hopefully keep helping.

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  • Faith1989
    replied
    I have also been on a mild anti-depressant for some time that needs to be uped, but I don't want to as I am afraid of getting worse. Don't worry I also have real bad anxiety about all this too, so ur not alone. It's not just the redness that bothers me with Restasis, its the fact that along with the redness when I am using it my flare ups get really bad especially at night. I dont really know what a PROSE lense is but i'll google it. Whether it be serum, hormones, cautery or whatever I am willing to try anything at this point..since I live in Canada medical expenses arent so bad..I feel for u guys in the U.S! I really hope the new doctors you look into help you..if there is one thing I learned with doctors is persistance to get what you want (or in our case NEED). Venting/talking to ppl in my situation always makes me feel better. Talking to ppl who dont have this problem look at me like I am nuts..."So, ur eyes are dry, big deal..get some drops." God it frusterates me lol

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  • Katewest
    replied
    The thing that makes me think I have Sjogrens is the severe dry eyes that will not get better with anything, and the tooth problems I have had. My mouth is a bit dry in the mornings. And I do get really painfully tired around 9 pm. (I wake up early though) It's so much worse at work. I work in a school and the lights, AC, heat, stress all get to me. I have red veins that are just permanent now. Well as of about 6 months ago. I am really hoping they don't get any worse AND start to fade. But I don't know if that is possible? I started Zoloft this week to help with the anxiety I have about my eyes. Maybe it's a placebo effect but I do feel better and I actually had an ok eye day today. Thinking about the reddness too much makes this much worse in my opinion. I don't think I'll try Restasis again until maybe the summer when I won't care as much that my eyes are red. I found a local opto that prescribes serum drops so I have an appointment with him in two weeks. Plus I am starting to look into Prose lenses at the NY clinic. My insurance is saying they are out of network and blah blah blah so I feel there is a battle ahead to get them. The lady said 12k with no insurance, but they could do a cash discount down to about 8k. ERRRR!!!! AND I don't even know if that will help. IPL was pointless and that cost 1000 for 3 sessions and Restasis mades things worse for about 150.00. Oh, and a doctor on here told me about hormone drops and how much success he has had with them. I'm only 30 so I don't know if thats the issue. Plus, the doctor he referred me too won't return my calls! I am getting more tests done for thyroid.

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  • Faith1989
    replied
    I had blood work done, I would be really shocked if I did have it b/c other than dry eye I have no other symtoms.. I wonder why serum tears seem so hard to get with doctors I mean they aren't dangerous..i could see doctors being hesitant to prescribe steroids but serum is so natural.. I am counting down the days to see this corneal specialist to get a good diagnoses. I wouldnt automatically assume u have this disease b/c of cavities.. do you have dry mouth as well?? Last night I didn't put my restasis in, and my eyes weren't nearly as red as usual this morning.. I know I shouldnt care about redness so much and should care more about the pain but sometimes I don't even want to leave my apartment b/c I feel like ppl are starring (this is probably all in my head, but i cant help it) I hope I get some answers really soon and get on with my life and same with you !!

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  • Katewest
    replied
    Oh that's right, you did say to keep trying the restasis. What test did they do for sjogrens? I read on here that ppl are sometimes not diagnosed right. I didn't think i had it because my mouth isn't really dry but i have had a lot of cavities and teeth issues which is a sign of not enough saliva.

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