Help for Ocular Rosacea, Blepharitis, Dry Eye

[trishk]

I am a 46 year old healthy female. Ocular rosacea, blepharitis, severe photophobia and dry eye began in January. I had only mild dry eye in the past and I occasionally used Systane drops (nonpreserved). I wore eye makeup and enjoyed the outdoors (running, hiking, swimming, yard work, etc.) I have never had facial rosacea. My eyes are a mess and my cheeks are only slightly rosy. Three visits to the opthamologist, two to the dermatologist, a visit to an ENT and quite a few visits to this website have led me to this post.

Currently trying:
Doxycycline 100 mg 2 x per day (2+ months)
Spironolactone 50 mg 2 x per day (6 weeks)
Restastis (one month)
TheraTears supplements 3 per day (fish oil, flaxseed oil, E)
Lysine
MultiVitamin
OcuSoft Cleansing Pads
Erythromyacin ointment at night
Systane Ultra preservative free drops 3-4 times per day
Ambien

I use polarized climate control sunglasses (WileyX) when I must be outdoors, which I now limit. I no longer wear eye makeup, which I miss. I have gone for allergy testing and have mild allergies to oak, ragweed, dogs, cats, and feathers. I've been on Tobradex ointment and drops, but my ocular pressure raised and I don't think it helped anyway.

I do not drink alcohol or caffeine; I don't smoke, or eat unhealthy foods. I eat mostly vegetables and fruits, and have stopped dairy. I am looking at going completely wheat and gluten free. I eat very little bread or sugar now. I cannot afford to lose weight, as I already have a tall thin frame. I had my hormone levels checked with my gynecologist, as I am on Premarin 3 years post hysterectomy. Hormones checked out fine.

I go back to the opthamologist this week and the dermatologist next week, though I feel they have run out of options. I have switched lubricating drops twice, trying GenTeal and Refresh drops. I am considering trying Manuka honey on the lids or ionized silver drops as a last resort. I am also thinking about acupuncture.

What else can I try??? This has changed my quality of life drastically. I have supportive family and friends, but I don't go out much due to the way my eyes look and feel. Currently, I have irritated and red eyes and lids, very dry feeling, gritty at the inner corners, and a small irritated bump on the lower inner eyelid rim. Any advice (or a miracle!) would be greatly appreciated.

[No tears in ATL]

I wonder if the Ambien could be having a slight effect. I was on sleep meds at one time and they made me feel a good bit drier. Antidepressants can have a similar effect. Of course, none of that stuff you can go off cold turkey and will need to taper down.

Sounds like you are doing everything else that you possibly can. How is your stress level? You say this started in January...anything happen around that time in your life? Did you start the ambien then?

[browneyesblu]

Hi trishk,

Your story sounds a lot like mine. My problems started about the same time yours did, same diagnosis. I'm not where I want to be yet (I want my old life back with no restrictions and not spending so much of my time treat this blasted thing!) but I'm a lot better than I was in January when I dreaded leaving the house just to run errands. Here are some things you can try that helped me:

warm compresses for at least 10 minutes twice a day. After do lid margin scrubs, then irrigation.
Azasite
Try a drop more targeted for MGD. Retaine MGD is supposed to be great but it's on backorder. Go to the Occusoft site to order. They called me today and said they would have some in next week. In the meantime, Soothe, Refresh Optive (both preservative-free) or Systane Balance (not preservative-free but works for me better than the other two--remember it's short-term until you get the Retaine)

Good luck!

[bunnyrabbit123]

Dear Browneyesblu,
I don't know if you've tried the Retaine MGD yet, I got some from the IPl Dr. I was going to and I find it helpful, but no miracle. It seems ot me it's restasis without the cyclosporine- I paid about 20.00 for the box-so it's expensive and you can't recap the damn vials.

[MLE]

I had my hormone levels checked with my gynecologist, as I am on Premarin 3 years post hysterectomy. Hormones checked out fine.

Hi trishk,

First, so sorry you are dealing with this. It is a crappy, annoying, debilitating disease that doesn't get the attention it deserves.

When your ob/gyn checked hormones, did he/she check your testosterone specifically? They often don't, and low testosterone, especially in post-menopausal women (or in your case, post-hysterectomy) is associated with MGD. I would urge you to get your testosterone checked, and if it is low or low normal to consider supplementation. Many patients have been helped by this and there are a lot of publications in animal models supporting the role of testosterone's protective effect.

-MLE

[browneyesblu]

MLE makes a good point, I am also investigating the low T issue. I consider it kind of a long shot though. How much testosterone should women have? When they test you they show a 'normal' range next to your result, it's a big range. But anything is worth trying with this miserable disease.

Hi bunnyrabbit, how are you doing? Did you ever see that hormone specialist? I'm not really expecting miracles from Retaine, although some on this site love it. I forgot your diagnosis, is it MGD? Retaine contains mineral oil so it's supposed to help the lipid layer. I agree it's ridiculously expensive however.

My endo appt. is May 7, maybe he'll know how much testosterone is enough.

[bunnyrabbit123]

Hi Browneyesblu-
Yes-it's mgd, but I've got lid problems too- it's never just one thing with me anymore. I'm now trying to wear goggles at night- I put them on, carefully lay on my back and then since I'm really a side sleeper-wind up spending all kinds of time ruminating about everything in the world till sleep eventually comes. then when I wake up the goggles are somewhere in the bed or on the floor. So that's not going too well- Do you use any ointment or gel at night you'd care to recommend? I haven't seen this guy yet. He's an internist who also does alternative medicine. My appt with him is May 27. I anxiously await the report of your endo visit!

TrishK- I think I've read somewhere of HRT being a factor in developing dry eye- I'm sorry,I wish I could be more specific-try searching the forum for "hormone replacement and dry eye- or google it.

[browneyesblu]

[QUOTE=bunnyrabbit123;82835]Hi Browneyesblu-
Yes-it's mgd, but I've got lid problems too- it's never just one thing with me anymore. I'm now trying to wear goggles at night- I put them on, carefully lay on my back and then since I'm really a side sleeper-wind up spending all kinds of time ruminating about everything in the world till sleep eventually comes. then when I wake up the goggles are somewhere in the bed or on the floor. So that's not going too well- Do you use any ointment or gel at night you'd care to recommend? I haven't seen this guy yet. He's an internist who also does alternative medicine. My appt with him is May 27. I anxiously await the report of your endo visit!

I'm using Refresh P.M. It does help, my eyes are much less dry in the morning. I'm not a sound sleeper and if I wake up during the night I often get up to put more in. I just ordered the tranquileyes goggles. I'm a side sleeper too so will probably have the same problems.

[bunnyrabbit123]

Thanks for this, Browneyesblu-
I'll pick some up tomorrow.

[cebeth]

I recently was diagnosed with ocular rosacea and was told to use cool compresses instead of warm. I also started wearing tranquileyes at night and find it soothing.