PolyQuad, DHEA and other thoughts and question for Rebecca

[dryeyes2]

Hi everyone,

Some of you may have read my posts on DHEA drops. They worked really well for the first month and then I had to decrease the dose. I tried another version of the drops and all of these changes caused my situation to go backwards. I went back up on the DHEA drops but I have not gotten anywhere near where I was when I first started them. I can't figure it out. Then it hit me last night; I wonder if the preservative PolyQuad in Tears Naturale II is causing the problem? That is the vehicle for the DHEA. I may be grasping at straws, maybe that is it? I see my doctor today and I will see what he says.

My eyes are so dry. I wanted to get off the Restasis and I still might do that because when I put it in my eyes for some time after, they are irritated. I don't think they have done much for me anyway.

Rebecca, I see that you had a post on the presevatives in Dr. Holly's drops. You stated that the preservative is not related to PolyQuad. Are they in the same family? I am wondering because I am wondering about trying them again, but if PolyQuad might be a problem, I don't know if Dr. Holly's would be too?

I am feeling so frustrated. To have have a taste of feeling normal (My eyes had not felt that good in a really long time) and then go back to where I am now is just baffling.

Thanks for listening.
dryeyes2

[Rebecca Petris]

Hi DE2,

Sorry about your regression

I'm punting the preservative question over to Dr. Holly - that stuff always was way over my head I'm afraid I know it must be very frustrating but I think you're doing a great job with the detective work to try and sort out the drug benefits from the vehicles, preservatives etc.

[dryeyes2]

Thanks Rebecca. I appreciate you looking into this for me.

dryeyes2

[pbeinetti]

dryeyes 2:

I just sent you a long reply, and for some reason it was not posted -- when I hit 'submit', it said I wasn't logged in. This has happened several times in the last few days. Rebecca, is there a problem?

Here is the essence of my post. I am in the same boat as you. I can't put ANYTHING in my eyes that is remotely 'chemical'. The Azasite experince was awful -- of course it has both BAK and EDTA. I should have known better. I am currently emailing Chuck Leiter back and forth. I saw your post re: DHEA drops in Teras Naturale. I won't use any OTC drops, so that's out for me. I asked him why a simple saline solution can't be used, and he says the DHEA won't dissolve. OK, he's the expert. He says Doxy drops can be made up with just a sodium chloride solution, so I think that the way I'm headed. I don't know if anyone has had success with doxy drops. I've asked, but haven't received any responses. I do think most (all?) dry eye involves dysfunction of the meibomian glands. Using lubricants is at best a temorary solution. The key is to get the glands working again, as best as possible. That means doxy, or DHEA. Maybe there is something else, but I don't know what it is. I do compresses, omega 3, scrubs, goggles, etc., etc. And, the eyes are getting worse. So, I need to do something.

Goos luck,

Peter

[Rebecca Petris]

I just sent you a long reply, and for some reason it was not posted -- when I hit 'submit', it said I wasn't logged in. This has happened several times in the last few days. Rebecca, is there a problem?

Dunno... I will test it out and get back to you. 'Fraid that will involve changing your password so I'll have the system send you an email with a new one.

[Rebecca Petris]

Peter, no luck. I tested and was not able to replicate the problem. Only thing I can think of is whether you hit a time-out problem.

[dryeyes2]

Hi Peter,

I saw my doc today and he said that my oil glands were still producing better even though my eyes aren't feeling better. He said it looks like I am having an allergy to something. I think it is the Restasis because my eyes feel really crummy afterwards and that reaction is relatively new. So he wants me to cut down to one drop/day and put preservative free drops in before I use my dose. Neither my doc or the phamacist at Leiter's think it is the Polyquad in the DHEA drops. I tried calling Chuck Leiter, but I didn't have time to leave a message before my appoinment. The pharmacist I spoke with thinks I should stay on the DHEA drops for a longer period of time. I guess that gives me some hope, especially since my doctor still sees oil production.

I asked my doc about MGD and whether it was the chicken or the egg type of thing- meaning did the inflammation come first or the decrease in oil production. He said it could be either way. I truly believe mine is decrease in oil first.
I tried doing the rice bag and Omega 3/fish oil supplements for several years. (I wasn't always good with the compresses) I never had any change. I was on the Restasis for a year next month- no change. DHEA- whammo - oil production. I guess it will be wearing goggles again more often and more non-preservative tears to help for now. I still am hoping they will start feeling better.

I hope Chuck L. can help you find a solution that will make your eyes feel better. I never wanted to try the doxy either orally or as eye drops. I didn't think that was my problem.
Let me know how it goes for you.

Best wishes,
dryeyes2

[pbeinetti]

dryeyes2:

I'm not sure which way I'm going to go. Chuck Leiter got back to me and said they can make up the DHEA drops in either Tears NaturaleII, or Carboxy methylcellulose Preservative free. I think I'll try the PF and see how that goes. Are you, or have you, used PF steroid drops to knock down the inflammation? I think I'll suggest that to my doc -- maybe steroid drops, and DHEA drops. I don't know if both can be used at the same time -- maybe. Let's stay in touch -- maybe we can learn something from each other. I just tried something new this morning and it might have some merit. It's too early to tell, but I'll mention it to you. I am sensitive to all eye drops. So, Rebecca suggested I try a PF saline solution, Unisol 4. I tried it and it was fine. But, I think it evaporated almost immediately. I also use another drop occasionally -- one with a preservative that 'disappears' when you put it in the eye. I think it mixes with your tear and turns into water and 02, or something like that. The drop I use is from WalMart, Equate Gentle Lubricant Eye Drops. The problem is that when you have little to zero tears, there is nothing for the disappearing preservative to mix with -- I read this on the internet. Therefore, the preservative stays on your eye and irritates. The experiment this morning involved putting a drop of the Unisol 4 in each eye, and then putting the lubricant eye drop in the eye immediately afterwards. This way the preservative has something to mix with. I've only done this twice so far, but so far so good. I'll report after I try it 10-15 times.

Good luck,

Peter

[dryeyes2]

Hi Peter,

I think the PF is the way to go for you. If my situation doesn't improve, that is what I want to try next.

Last year at this time when my dry eye situation came to a head and I had some corneal erosions, I was on a steroid for a very, very brief time - maybe a week. I didn't want to be on it for very long. It didn't do anything for the dry eye.

I doubt your doctor would want to try you on both DHEA and a steroid drop at the same time since DHEA is technically a steroid itself. That is why my doctor is following me on a monthly basis - checking my pressures and making sure I don't develop cataracts. From what I understand after speaking with Chuck L. the chances of that are slim anyway because DHEA is a weak steroid. Personally I think it works more as a hormone replacement vs. a steroid decreasing inflammation. Also, from my experience. Don't try too many changes at once. Then you won't know what is working or not working.

I have tried the Unisol saline solution and found it burned my eyes. So I don't use that. I do like the suggestion that Dr. Latkany has about keeping eye drops in the refrigerator. The coldness can help with inflammation and it feels good too. If you can do the Unisol that is great and it does makes sense to tolerate preservative-free drops.

I tolerate Theratears PF and their PF gel as well as Genteal gel (not the gel drops - those irritate). My doc gave me a sample of Systane. I have had that before, but didn't find it very helpful. When I was using a lot of drops (before the DHEA) I would change drops based on how my eyes felt. I used to use Refresh Endura because early on those actually felt good, but now I won't use them since they are the vehicle for Restasis and I am having trouble with those.

Do you wear protective eyewear? That might help you too. I wear them around the house and I don't have to use as many drops. I actually was able to stop wearing them when the DHEA was working well.

Let me know how it goes.
Best wishes,
dryeyes2

[pbeinetti]

dryeyes2:

Thanks for the ideas. Chuck Leiter suggested I use
"a Dexamethasone/Bacitracin oph oint that we make, it might help both things (inflammation and MGD)." I might try that. Have you tried it?

[pbeinetti]

Sorry it has taken so long to post -- a lot going on. My local eye doctor has given up on me. Doesn't respond to calls, emails, etc. I guess doctors have better (more money) things to do than work with suffering patients who have dry eye. I did go to FL to see Dr Tseng. Long story short, he says my sunken eyes are a major contributor to my dry eye. I have incomplete blinks. Solution? Blink hard. I'm finding it difficult to do that as most of the time blinks are involuntary. He said I have 'severe MGD', but didn't give me a solution. He did put punctual plugs (flow control) in the top ducts (already had them in the bottom). My eyes are now filling with tears, and I need to blink like a windshield washer to be able to see. I don't know if this is the answer. Seems to me like I'm just building up stagnant, toxic, irritating tears. He said to rinse my eyes at least 2x per day to eliminate the stagnant tears. He also made up some blood serum drops. They are very soothing, but tend to irritate if used more than twice per day. The Rx is 4x per day, but I can't do that. I have not tried DHEA drops. It sounds like you have had mixed results. My eyes did feel better in FL -- I was there 5 days. I think the higher humidity helps me a lot. I was OK when I returned to CO for a few days, but then the eyes started to dry out again. I am convinced I have to find a solution for the MGD -- everything else is a bandaid. I recently found out I have mild adrenal fatigue -- have had it for at least a decade. This might be a contributor to dry eye in a number of ways. Here is what Dr Tseng said, paraphrased; 'He told me that there are several possible connections; 1) the adrenals control the meibomian gland secretions which express an oily fluid that allow the tears to stay on the eyes. He indicated that I have ‘severe meibomian gland dysfunction’, 2) I have ‘severe 1+ OD and 2+ sunken globe (due to the loss of orbital fat), which means I have sunken eyes. This restricts the blink of the eye, and contributes to dry eye since the blink closure is incomplete. He indicated that hydrocortisone (Rx for adrenal fatigue) can have a positive effect on the orbital fat, and perhaps help reduce the blink closure problem, 3) he feels that hydrocortisone can help reduce the inflammation, and discomfort, in the eyes that occurs from many years of being dry, and 4) adrenal fatigue affects the iris of the eye in that the iris contracts when it sees light, but cannot hold the contraction and dilates slightly. This might be the cause of the halos and starbursts I see when I look at a light.' So, I'm trying to get my primary care doctor to treat me with hydrocortisone. So far, no luck. You'd think I was trying to get an Rx for cocaine. I'm going to another doctor soon who I know will treat me, so we'll see.

I hope you are doing better.

Peter