DHEA drops and doc visit

[dryeyes2]

Hi,

I saw my doc today for my first check after starting the DHEA drops and he was surprised to see the improvement. My oil glands are producing more oil and the inflammation is almost gone. He is having me reduce the amount of times I put the drops in over the next several weeks and I will see him again. I am thrilled that there is some improvement. Not having to wear goggles around the house is great freedom.

I will keep you all posted on my progress.
Best wishes,
dryeyes2

[jannz]

Measuring benefits of DHEA eye drops therapy

Hi dryeyes2...

I'm glad that the DHEA drops appear to be working for you but I'm wondering how do you measure that the inflammation being down and the oil glands producing more ??? ie; What are the tests / measurable indicators -- ?? --

Also, did you test for being low in androgens ?? ie; testosterone / DHEA

Thanks...
Jann

[dryeyes2]

my experience

Hi jannz,

Before I went to see the doc for followup on the dhea drops, I was experiencing more comfort and didn't have to wear my goggles as much. I could see the oil on my eye lid margins after doing a lid massage. I wasn't having much of that before. He told me that I had some inflammation of the oil glands before. When I saw my doc for the followup he too said he could see the oil and he could see the inflammation had decreased. He was been monitoring me for a year now. I saw him just about 3 weeks before this appointment and he was amazed to see the oil coming out the the glands. It was pretty dramatic difference in 3 weeks time. Everything was based on what he could visually observe. I did have one plugged gland that he unplugged. He didn't do any testing other than checking my pressure. He was concerned it might go up because of the drops. My pressures were actually lower than the last time I saw him.

I was tested for bioavailable testosterone and DHEA-S levels. Both were in the low normal range. Because of surgery, I have gone through menopause early. My doc said that even though the levels were technically "normal" that because of my history, they were probably not high enough and thus causing some of my problems.

I have just switched to a different version of the drops from another pharmacy. I am not sure these ones will work as well because they tend to irritate my eyes more. But I am trying to give them some more time to see. My doc says he would like to get me off the drops because there isn't enough known about them, but I can't see how going off will work. I think I would at least need to stay on a drop a day, but I don't know. I am down to 2 drops a day now.

I let you know how it goes.
dryeyes2

[jannz]

DHEA....and magneisum

Hi dryeyes2,

You mentioned that your new eye drops were more irritating since you changed pharmacies -- was there a difference in the prescription between pharmacies?? ie; a percentage change in the DHEA perhaps ??? I talked to one of pharmacists at Leiter's pharmacy and he suggested starting out at a .5% for a month, then progressing to the 1%. Just wondering if that's what you were doing. --??--

Also, I'm wondering if you are taking any DHEA orally?

Jann

[dryeyes2]

I don't take DHEA orally. I originally had a 1% four times a day prescription from Leiter's. Those drops sting, but it gets over with pretty quick and I don't feel like I have residual oil in my eyes. They have to be refrigerated. I had to pay for those out of pocket and my insurance company wouldn't cover them because they are not a participating pharmacy. I tried Diplomat Pharmacy. They specialize in compounding too. Their drops are in an olive oil base and are not refrigerated. It seems like the particles of dhea are smaller than Leiter's. Those drops stung some when I first used them, but now they sting more every time I use them. I would have thought that olive oil could be soothing, but these drops are not that. I still have a few days left of the old prescription, so I back to using those. I am trying to find out if they can make the drops differently so I can tolerate them or see about Leiter's again.

Best wishes,
dryeyes2

[pbeinetti]

dryeyes2:

Are you still using the DHEA drops? If so, which ones? From Leiters? I assume they were non-preserved (is that right?) since you needed to fridge them. Please give me an update as I am thinking about asking my Dr to write an Rx for them. What did Leiters charge?

Thanks,

Pete

[bassfan]

Well im not dryeyes but i'll give my input. I tried dhea drops a couple months ago. I think Leiters charges around $85 shipped for the bottle. I got mine from a local compounding pharmacy...although it wasnt really any cheaper. I didn't really see any benefits from them but its definitely worth a shot.

bassfan

[dryeyes2]

Hi Pete and bassfan,

Pete, I am sorry I just saw your question today. Yes, I am still using the drops from Leiters. I just ordered my third bottle today. It is 86.10 if your insurance doesn't cover it. I was amazed when I found that my insurance is now covering it minus my copay. YEA! You have also pay for shipping which I supposed depends on where you live. I paid to have it sent overnight and that is 20.00. These drops actually do have a preservative in them from the vehicle that they use. They are putting them in Tear Naturale II. You can get them in unpreserved too. Mine has to be refrigerated, so I would assume that the unpreserved has to be too.

I had tried another pharmacy who used olive oil for the vehicle. I could not tolerate those at all. It cause prolonged burning and it seemed to irritate my eyes. The ones from Leiters do burn, but I can get through it because it goes away relatively quickly. Since my doctor wanted me to decrease my dose, my eye situation went backwards. He said it was ok to increase my dose again. I have been on 4 drops per day for 12 days. I am seeing more oil production, but not quite to the point I had when I was really feeling a difference. I think it might take a few more days. I should have kept a diary of my progress that would have helped. I am also trying to do 2 warm compresses (with a rice bag) a day and lid massages more than that. I have got a couple of blocked glands on one eye that are pretty stubborn. I see the doc again in a week. I would like to see if I can get back to where I was and then try and go down to 3 drops/day. I think that 2 is not enough.

I am sorry that they didn't help you bassfan. How long did you use them? How often?

I have also started to wonder if there is a synergistic relationship between Restasis and the DHEA drops. I tried to go off the Restasis, but my eyes were getting more irritated. It also could be that since the DHEA wasn't working at 1 drop/day that my eyes were really dry and irritated by themselves. It really ends up being a complicated balancing act and trying to figure out what works.

Best wishes to you both.
dryeyes2

[bassfan]

I used them for about 3.5 weeks, 4 times a day. I had this funny little bump that appeared on the inside of my eyelid, thats really why I quit because it was never there before and went away afterward. It was like one of the meibomian glands was inflamed. I probably should have went to a doctor and got his opinion but I was too busy at the time.

Truthfully i wasn't happy with the drops anyways. They seemed very inconsistent and at first i couldnt get them out of the bottle. I had to poke a needle inside the tip a bunch of times just to get them to come out.

[dryeyes2]

Hi Bassfan,

I wonder if the bump is a blocked meibomian gland? I had one after starting the first time and I think I have two of them now. I am trying to get the heat there, but it doesn't seem to solve it. I am going to ask my doc next week. I wonder if the oil starts flowing some it does cause blocking? I don't know. There isn't a lot known that's for sure.

The drops from Leiters come in a glass bottle with a glass dropper. I have not have them stuck, but I did find this last bottle did not last me the whole 30 days and I am not sure why. I need to let them know. I also think that the drops may take more than 3 weeks to show if they help or not. They are a pain-literally with the burning and having to keep them refrigerated, but the relief I got that one week was worth using them. I am hoping to get back to that point. I have found that the drops need to be shaken very well (almost a minute) and I squeeze the dropper to get what is in there out and in the mix before putting the drops in my eye.

I thought in the info might be helpful in case you decide to try the drops again.

Best wishes,
dryeyes2

[Jade]

Dryeyes 2,

Hi. Did the Dhea drops ever get your eyes feeling good again? I tried them for a while and saw no difference. I've read in many places that the meibomian glands have testosterone receptors on them that cause them to produce more oil. Dhea is only a precursor to testosterone and estrogen. My blood test was low for testosterone too.

I'm finding that a certain treatment seems to be working for me and then it stops. Then I wonder if it was just a coincidence.

Have you or anyone else tried oral clindamycin (Cleocin)?

[dryeyes2]

curious experience

Hi Diana,

So far they have not got me back to where I was before he had me decrease my dose. I don't understand it and I am very sad and frustrated. It took me a while to get back to 4 drops/day because my eyes were irritated from going down on them and I had stopped wearing my goggles (because they had improved) that my eyes were more dry. It has been 18 days today that is 4 drops per day. When I first started at this point (18 days after starting), my eyes felt almost normal. I am still hoping they might kick in, but I just don't know.

That is my understanding too about the DHEA attaching to the androgen receptors in the eye. I am curious about testosterone cream if this doesn't work.

You say you didn't have luck with the DHEA. Did it work at all for you and then stop? I am on Restasis and I don't think it has done much of anything. I tried going off it for almost a week about a month ago. I went back on quickly because I think there were too many changes going on with my eyes. It really is a balancing act that involves a lot of different factors.

I still truly believe the oil issue is hormonally related and there has got to be a way to remedy that. I have wondering what would have happened if I stayed at the 4 drops/day and not decreased my dose. Would I have ended up in this same position now or would it have continued on working? It is so baffling.

The only reason I use oral clindamycin is for premedication for dental appointment due to a heart condition. I had to use it 3 times last fall for dental work and did not notice any change in my eyes. Granted it is a one time high dose, but I know I would not be able to tolerate it for longer. It really upsets my stomach. I would be leery about trying a systemic antibiotic for an eye issue. With the over use antibiotics, I know it would be a mistake for me to use it for my eyes. I have limited number of antibiotics I can take because of allergies. Personally I think if you can limit your exposure to the specific area, that makes most sense to me. Has your doctor suggested clindamycin for this?

Best wishes,
dryeyes2

[Jade]

Hi, DryEyes2,

I thought about the oral clindamycin myself because I"ve noticed it's used for acne more these days. Tetracycline and erythrmycin have been used for acne as well. Also, from what I've read, the bacteria that's naturally on the skin and eyes is staph. A newer form of staph that's more and more common--not always causing an outright infection is the more resistant form of staph: Methycillin resistant staphalacoccus aureus (MRSA). Clindamycin kills MRSA. I have no idea if it would help me, but my symptoms drive me to try everything I can think of.

Erythromycin ointment gave me huge relief for 3 months last spring and summer and I thought I had found my answer. Since it quit working in late August, I've tried it and Tobradex a few times and it only seems to make my eyes feel worse.

Oral tetracycline seemed to help a little in January when my eyes were really bad, and even though I still take it, my eyes are sometimes good and sometimes bad.

I've been on restasis for about 6 weeks. I don't think it's helping, but I'll probably stay on it for at least 6 months since they say it takes a long time to work. I tried it last year, but then it hurt my eyes so bad I couldn't use it. For some reason I tolerate it better now but it still burns somewhat.

Several weeks ago I re-read Dr. Latkany's book--the part on heating the eyelids and then expressing oils with a q-tip and wiping with a plain q-tip. (My doctor had always wanted me to wipe the inside lid borders with some type of lid scrub or baby shampoo and this was way too painful for me) With Dr. Latkany's technique, I could see the oils in the corner of my eye at the end of the day for several days and my eyes were very comfortable. Then, one day, the character of the stuff in the corners of the eyes had my typical white thin foamy character and my eyes were dry again. (My right eye is always much worse than my left)

When you said how sad you were about the Dhea not working, I knew exactly how you felt. I've felt this way so many times with so many treatments. Dhea never helped me, and I quit it after a few weeks because I could feel the solids in it--plus I think they make it because it's not regulated like testosterone is. I know they sell it at my local supermarket in pill form as a dietary supplement. I've never heard that the meibomian glands have Dhea receptors on them. I wish the parmaceutical companies would develop a testosterone drop for all of us. They've been studying it since the early 90's!

I got my GP doctor to prescribe testosterone cream and I put it on the skin of my upper and lower lids. It did not help at all and my eyelids swelled a little. I quit it after 3 days.

I hate having this, because when my eyes feel good, I feel like a normal person living my life. When the pain comes back it not only hurts, I worry about can I make it to work the next day, can I go anywhere, do anything, etc. I hate living like this.

I really wish they would look into a surgical procedure to open the meibomian glands with little tiny probes. Anything to get us out of our misery.

I'm in the process of having a scleral lens fitted for my right eye. I first went in 6 weeks ago. Don't know why it takes so long, but after the first fitting, I know I'll be real lucky to get a proper fit I can actually see out of. My first lens had a big air bubble in it.

Let me know if you find anything that helps!

Diana

[dryeyes2]

update

Hi Diana,

I saw my doc the other day and even though my eyes are not feeling like they did when I first when on the DHEA, he said he can still see that I am producing more oil so I am staying on it. He think I am having an allergic reaction to something and I think it is Restasis because I get a lot of burning after I use it and that is relatively new. I am not sure if I am going off it completely or not. He said to decrease it to once a day, but if it is irritating my eyes, I kind of want to get off of it.

They told me the same thing that you really need to be on Restasis 6 or more months to see if there is a difference. If there was any difference with me it was minimal.

DHEA is a precursor to testosterone and estrogen. It is an androgen and the meibomian glands have androgen receptors in them so that is why it is supposed to work. The reason I heard why there isn't a dhea drop on the market is due to the fact that they can't sit on the shelf without being shaken periodically. The crystals clump at the bottom. I called Allergan to see if they could tell me the status of their trial on androgen drops, but they never called me back. I called twice.

I really understand about how you feel and how this dry eye situation affects your life. Simple things or should I say what used to be simple, isn't anymore. Everything has to be planned. And it is hard going from day to day wondering when there will be an answer.

I hope the scleral lens works for you. Let me know how you do.

Best wishes,
dryeyes2