I think my DES is hormonal...worth trying Restasis?

[blueberry]

Hi everyone,
I've had moderate/severe dry eye for about a year now, and since it started after the onset of perimenopausal symptoms I believe it's from a hormone imbalance/deficiency, but I'm still working on getting the hormone therapy right (not easy). My optometrist was curious to see if the hormones would work, as he's seen this in other patients, but after no relief from Alrex ( maybe 2 days of relief, then worse) he prescribed Restasis. This was several months ago and I never filled the prescription because after the Alrex experience I was reluctant to spend another chunk of $$ on meds while waiting to see if the hormones would kick in.
It seems there's sort of a trial and error approach in optometry that doesn't take into account underlying systemic problems. I've seen a rheumatologist who cleared me for Sjogren's so I'm not sure an autoimmune drop is appopriate...or is it?
My eyes aren't terribly uncomfortable...my tear production is pretty bad but I manage ok lately by spritzing my eyes (closed) with water and creating a moisture cloud since I haven't found a drop routine that works (tried about 8 different kinds). I don't want to neglect my eye health but I haven't been to the optometrist in several months since I'm avoiding Restasis and I've got other symptoms/doctors to deal with...had been fatigued & foggy-brained all winter, so much to deal with. When I read stuff online there's an emphasis on using drops to protect and heal the eyes, but if they don't feel better with drops, does one put them in anyway and assume it's all fine in spite of discomfort? I vacillate between using them and giving up on them.
Does anyone know of a good ophthalmologist in Portland Maine? This might be a question for another forum, I realize, just thought I'd throw it in here.

[tearless2]

I think if a person has aqueous deficiency and their eye care professional recommends it, then restasis is definitely worth trying. I can't say for sure but I feel like it has helped me. I haven't had any side effects that I know of. I believe it took 6 months to start working and I am hopeful that it is staving off any more decrease in tear production.

As for whether an autoimmune drug is appropriate for those who don't have an autoimmune issue, well, I think it is very hard to tell sometimes whether a person has an autoimmune condition or not. I think some people may have mild autoimmune issues that don't necessarily show up on a blood test.

Are the drops you are putting in your eye increasing your discomfort? or do they just feel the same after you put them in? What drops are you using?

If your eyes are very inflamed, putting anything in them can be very painful.

[Hopeful2]

Hi again,
I too find that I am not sure about using drops. I have tried: Resresh Plus, theratears, tears Naturale, Refresh optive, and Oasis. I have some kind of issue with most of the drops. They feel moist at the start . . . but that wear off. The other day I though maybe I should give the Oasis drops another try. I think they ae supposed to be good for unstable tear films. About ten minutes after inserting them my eyes felt like they had a thick coating on them. . . very uncomfortable. I had to blink and yawn like crazy to try and clear that feeling. It would probably be good for me to find a drop that I could use at night to add moisture. During the day I manage pretty well with yawning to remoisturize my eyes.

I think that sometimes what I experience around mid day is actually sore eyes caused by eye strain. If I avoid overusing my eyes I tend not to get the afternoon soreness to the same degree. By the way, my vision is off due to Lasik correction issues.

Just curious, does restasis do much for the quality of the tear film?

[tearless2]

I don't think restasis helps my tear film quality. I actually feel drier several minutes after I put the drops in. The feeling goes away after that. I am hoping that it just helps with overall eye inflammation.

I don't use over the counter (OTC) drops too much, they make my eyes feel like they have gunk in them. The one I like the most is Oasis.

[kitty]

My DES started with perimenopause so I too strongly suspect a hormonal component. I also have MGD and ocular rosacea. Nothing but steroids seem to help me. I tried Restasis but had a sensitivity to it. It seemed like it made all my DES symptoms worse so my doc told me to quit using it. You never know until you try. The causes of DES can be multifactoral. What works for you may not work for someone else. If your doc suggests it, it can't hurt to give it a try. Just give it 3-6 months to see the full benefit. FYI, I have been on and off the Pill, have seen no significant difference with my DES as a result. It seems whenever I go on or off, my DES may flare for a short time until my body gets used to the new routine, then it is back to the old status quo. Good luck.

[MaryVa61]

Restasis & other treatments

I've had dry eyes since childhood but it got worse and required treatment at around age 32, then a year ago when I hit menopause it became unbearable. So I assume the hormonal changes had a huge, negative, effect on the pre-existing problem.

I tried Restasis twice, once years ago and again this year. It didn't help me at all and made my eyes feel worse. I was supposed to give it several months to work but just couldn't stand the pain and had to give up after less than one box (3-4 weeks?). I have a lot of other health problems so it was assumed I have an autoimmune disease. I'm awaiting Sjogren's biopsy results now, but test negative to all AI blood tests.

What's working for me is the following:
Oasis Plus drops (the only drops I've found that I'm not sensitive to)
Refresh PM at bedtime (love this)
humidifier every 3rd evening, and one weekend day all day (daytime, when I'm awake and near it)
Fish Oil and Flax Oil, liquid form taken with a spoon (my new favorite thing in the world. Is working great)
Avoiding triggers for allergic dermatitis (had allergy patch tests at dermatologist's and then replaced, toiletries, cosmetcs, cleaners)

I hope you find relief soon.

[blueberry]

Thanks for your replies everyone. I use Oasis drops sometimes, and they don't seem to irritate but whether they soothe and protect really seems to vary. My eyes look totally normal to me, not inflamed. I guess the only way to know with restasis is to try, but since I'm sure I have some kind of wider systemic problem I'm trying to do a lot and it's confusing, hard to decide how to address localized symptoms and at the same time get to the root of the problem. I know there are hormone eye drops out there but most doctors don't reach for those first.
I think Restasis just gets tear production up, don't know if it helps oil or mucin production, it might.

[blueberry]

Is there a way to tell by looking if your meibomian glands are working? My optometrist said I had low tear production and low break-up time which I took to mean both kinds of glands are deficient in me, but I have no visible inflammation. He also recommended warm compresses which I've found don't help. I watched a youtube video on expressing oil from the glands and it looked like there should be oil visible, which I don't see for me. I guess I might have my answer in my below-average tear break-up time, just wondering. I think I'm just really dry.

[Hopeful2]

Hi! ditto for me! I have a slight amount of redness around my upper lid, no crustiness at all, and no clear bumps on my lid margins where the miebomian glands are. When I try to squeeze some out with a Q-tip massage, I don't think anything comes out, but the lid margin looks somewhat shiny or moist. Also when I do a warm compress, I don't get any cloudiness in my vision, suggesting that oil is coming out.

I did get lower plugs and I think the drops feel better in my eyes with the plugs. Before when I put the drops on they would be moist and then 10 minutes later my eye seemed to feel more dry.

[blueberry]

Hi! ditto for me! I have a slight amount of redness around my upper lid, no crustiness at all, and no clear bumps on my lid margins where the miebomian glands are. When I try to squeeze some out with a Q-tip massage, I don't think anything comes out, but the lid margin looks somewhat shiny or moist. Also when I do a warm compress, I don't get any cloudiness in my vision, suggesting that oil is coming out.

I did get lower plugs and I think the drops feel better in my eyes with the plugs. Before when I put the drops on they would be moist and then 10 minutes later my eye seemed to feel more dry.

Sounds like we both have deficient lacrimals and miebomians! I was reading someone else's post about expressing oil and there should be something visible, or you should feel it. I'm still on the fence about Restasis and wondering about plugs. I also wonder if hormones or other factors affect the mucin layer, which is even harder to figure out but has been implicated in general eye comfort/discomfort in the absence of a change in oil/aqueous production.

[Hopeful2]

Hi Blueberry,

I do think hormones play a role in all of this, and not just the sex hormones. It would appear that our stress hormones also influence our eyes and can contribute to dryness. I think trying to isolate just one factor (e.g. one hormone) might be too simplistic. My goal now is to find a way to reduce the stress I am experiencing over my dry eye situation.

[neve]

Hi blueberry!

This is what my corneal specialist said- Systane balance restorative for day as the formula is supposed to help restore lipid layer. At night, Muro ointment to help protect against erosions because my eyes (especially one) are so dry and I have already had damage to cornea due to dryness. I use it in both. It does not burn me at all but I do buffer it about 5-10- minutes prior with the Systane drrops. I find the muro ointment to be comforting unlike some other DES sufferers that claim it burns. I also have no trouble removing it from my eyes in the AM...I use a couple of drops of Unisol 4 (saline) and that is all that is needed. Also, for me, the specific Systane drops do not irritate, burn or make my eyes feel dry, but that is just me...not sure about your specifics.

If you looked at my eyes, you'd say they look 100% NORMAL. nO SWELLING, CRUSTINESS, REDNESS ETC. As far as Restasis, my opth doc said that in his experience, restasis tends to work better on people with autoimmune problems...that is if it works at all and if people can tolerate the burning that occurs often. And because of the outraegous cost, it is prohibitive for anyone without insurance as it can take about 6 months to work, if at all. He said trying plugs would be more cost effective for me, even though two plugs are upwards of $1,0009 and no guarantee that they will work or even stay in.

I have a serious lack of aqueous layer of tears as well as a serious problem with lipid layer. The Systane has been the best drop I have tried and clearly I need to keep my eyes moisturized as told to me by my doc. I was also told to get off Alrex...used it as needed for about three weeks and he said that to continue it is very risky. I have found that COLD CLOTH CAN HELP MY EYES SOMETIMES MORE THAN A STEROID DROP THO OBVIOUSLY i CAN NOT WALK AROUND ALL DAY AND NIGHT WITH A COLD CLOTH.

i HAVE MASSIVE SYMPATHY FOR ANYONE WITH THIS DISEASE...IT REALLY IS A NIGHTMARE.

My best wishes to you and every other person suffering with this disorder. Please feel free to write back or PM me if you'd like.

Neve

[jads]

My 2 cents worth

It is well known that women experiencing menopause or other conditions causing wild swings in hormone levels (progesterone & estrogen) need hormone treatment to balance everything out, hence HRT is very common.

Had an email from a lady being driven crazy by DES but all seemed fine whenever she was pregnant! She wanted to know whether she should get pregnant again! Drastic measure to cure dry eyes I thought BUT...when you are pregnant levels of progesterone rise quite dramatically. I don't think this is a coincidence that her DES becomes better as progesterone rises. There is a strong link IMHO.

HRT focuses mainly on estrogen replacement, when often it would be better in some cases to replace progesterone and let the body convert it to downstream hormones, including estrogen, testosterone, cortisol and others. Many women are very low in testosterone and never know it.

Wray over at progesteronetherapy.com has a wealth of knowledge and experience with supplementation and some pretty extraordinary results as well !

Restasis doesn't do anything to rectify hormone imbalances.