DHEA Eye Drops

[SusieD]

Thats good to hear JJ

Did you have your androgen levels tested before going on them - are you deficient? or did he just want to try them because other things hadnt helped as much as you'd hoped? Also, Im guessing you still have a problem with MGD for you to go on these drops?

How long have you had this problem?

Hope the improvement continues.

[SusieD]

PS

How old are you? (if you dont mind my asking!)

[JJ75]

I'm 31. I do have MGD and things have been progressing relatively well. I never had my androgen tested but I wanted to try the drops to see if they would help. They do seem to be working but again I think it's to soon to really tell..

It's really hard to say how long I've had MGD. I'd say probably for 8-9 years but it only started bothering me 2.5 years ago. But when it flared up it was horrible. Now I'm basically back to normal as long as I take "all" my medicines drops and compresses...

[Rojzen]

sudden onset; DHEA and lipids; speculative deductions

Wanted to thank Dr. Piven from the bottom of my heart for the superb account of his experience with DHEA drops. Some years ago, I communicated with David Sullivan, as well, and he was brilliant and compassionate.

I tinkered with systemic DHEA, to no avail, and had my circulating testosterone levels measured. . .Ultimately I realized that "deficiency" in circulating levels was likely not to have much to do with whether androgens applied topically could bring my meibomians back to life. . .and so I've been sold, intuitively, on the idea of androgens for a long time. . .DHEA sounds truly like the next best thing. . .and I am now trying to find a way to secure an Rx for this. . .

Wanted also to address the sudden onset phenomenon that Dr. Piven described, in his own experience. The same thing happened to me, and now I wonder if we can use this information diagnostically, in a collective way, some day.

While suffering from a debilitating malaise (fever of unknown origin, and fatigue, for over 2 months) my eyes suddenly went from normal to relentless burning, over a period of less than 3 days. . .They never returned to anything close to normal (8.5 years later), and my TBUT remains steadily at 0 to 5 seconds (and I must wear moisture chambers 24/7 as a result).

When an ophthalmologist finally realized my lacrimal production was OK, he observed the complete inactivity of my meibomians, with metaplasia blocking their openings. . .I believe this "death" of my glands happened relatively quickly, and WAS connected with my fever. . .

I offer this, of course, only as food for thought, and not in the spirit of any attempt at science: Could it be that sudden-onset dry eye, with severe burning (i.e. rapid tear evaporation and loss of lipids), associated with meibomian destruction, is infection-related in many or most cases (even those not involving rosacea/anaerobic infection)? Also, when onset is sudden, can an argument be made that the examining opthalmologist should consider MEIBOMIAN death early on, as a probable diagnosis?

Why does this matter? Because it is possible to spend years being misdiagnosed with a lacrimal gland problem, and then not to receive treatment for lipid deficiency for that whole period. . .This happened to me, putting me out of work for over 2 years, and restricting me to indoor activity for much of that time. . .

Once lipid deficiency was the confirmed primary cause of my problem, barrier/anti-evaporation methods were pursued, and I came back to life. . .

Anyway, thank you, Dr. Piven, and may your relief from suffering continue forever. . .

[Vicki In Oregon]

My dry eyes literally happened overnight. It began with one dry eye initially. I recall I was fine one Friday night, by Saturday morning, my whole life changed. It was not gradual at all. I wish my doctor would prescribe me DHEA eye drops. I dont want to take the supplement as I think I tested okay for DHEA or DHEAS whatever it was and dont want to risk hair loss. They say I dont have MGD but how can I not when my TBUT is low? I am so tired of suffering endlessly. I read that antibiotics long term can help with this but not sure how safe that would be. It specifically said they can help with Sjogren's but I know people here take tetracycline and such for their dry eyes. I wonder if that can help me or not. I think it will be difficult to find someone to give me rx for it. Rozgen, I am glad you found soemone to diagnose you correctly. I have not found the right doctor for myself all this time, i know this becuase the eye pain never gets better, only worsens despite restasis, plugs, fish oils, lid scrubs etc...i just began NAC and hope it helps. DOes anyone know how much to take and if it works on the lipid or aqueous layer? Thank you.

[Pinky]

DHEA and lipids

I offer this, of course, only as food for thought, and not in the spirit of any attempt at science: Could it be that sudden-onset dry eye, with severe burning (i.e. rapid tear evaporation and loss of lipids), associated with meibomian destruction, is infection-related in many or most cases (even those not involving rosacea/anaerobic infection)? Also, when onset is sudden, can an argument be made that the examining opthalmologist should consider MEIBOMIAN death early on, as a probable diagnosis?

I've been wondering the same thing. I ended up with MGD after two months of using semi permanent eyelashes. When they were removed I had severe blepharitis. I tested positive for bacteria on the eye lids, so basically I had an infection. Although I had/have rosacea, my ocular symptoms were mild. But since the infection my eyes have never been the same, especially the meibomian glands. Although the glands are open, the oily layer has been compromised. The glands either excrete too much oil, or no oil, and the oil is too thick. I am currently on Restasis, doxy, fish oil, and things have improved a bit but the MGD is driving me crazy.

To go from completely normal eyes to barely functioning ones over night is very difficult to accept. My doctors do not believe that the infection brought on my eye troubles and tell me that my DES and MGD is because I'm a woman in my early 40s. I know this is not the reason. My mom is 72 and does not have DES, and my sister who is less than two years younger than me does not have DES.

My eye problems came on suddenly but for some reason not a single dr. is willing to believe this and I have seen almost a dozen. At this point, after careful research, my next plan is to try DHEA drops. They seem to be effective for people with sudden onset DES with MGD.

[Rojzen]

sudden onset and DHEA again; something's clicking

Dear Pinky - -

So glad I found you. . .I have also written to you privately. . .

I had a very sudden onset, too. . and this happened when I was only 44. . .I am now 53, and have yet to experience significant relief from the endstage meibomian failure I developed 8.5 years back. . .Moisture chamber glasses help me function. . .but I am essentially disabled without them. . .

I share your quest for DHEA drops, as I've long believed that the androgen-related research was going to be the main hope for reviving meibomian function. . .

Dr. Piven's posts have been superb, on this. . .How interesting that his case involved sudden onset, too. . .

And a second case of sudden onset, reported here, has also responded to DHEA. . .

I have been ALL over the U.S., over the years, and have seen the biggest names in dry eye. . .Most fabulous was Dr. Scheffer Tseng, then at Bascom Palmer. . .He was once immersed in lipid replacement research. . .Did not pan out for me. . .

Do you have a doc who is with you on the DHEA quest?

I live in both Ohio and MD, but will travel. . .

[Pinky]

sudden onset and DHEA

Hi Rojzen,
My dr. is not an expert in dry eye, but so far, if I bring him references to back my prescription requests, he usually obliges. Though to date, I haven't asked for anything too controversial. We tried the castor oil drops from Leiter's as it is supposed to help MGD. It didn't help me much, probably not very effective with severe cases. Also, I'm currently on Restasis which is not yet available here in Canada, and he was helpful in getting the med for me. So fingers crossed that he will help me in my latest quest.

I wonder if you have seen Dr. Jerry Paugh at the Dry EYe Institute in CA? He is one of the few doctors I know of that at least knows how to do a meibography. My dr. didn't have a clue, but bless his heart he tried. Anyway, Dr. Paugh seems like a nice guy and he gave me a cheery half hour of his time on the phone which was much appreciated. I still may go down to CA to see him as I want to know exactly what is going on with my glands.

When you say that you have end stage MGD, do you mean that all your glands have atrophied? Do you have any oil secretion?

Are you familar with Dr. Mathers feedback-loop theory? He found that seborrheic blepharitis, which my understanding is the same as MGD, leads to damage of the lacrimal gland and he concluded that there must be a feedback mechanism to explain the connection.

My theory is that my glands got damaged suprisingly quickly, although I may have had mild MGD before and not known it. The damaged meibomian glands then adversely effected the lacrimal glands. And here I am today with severe DES and MGD. Sigh.

BTW, have you read Dr. Sullivan's paper: Androgen Deficiency, Meibomian Gland Dysfunction, and Evaporative Dry Eye? I'm trying to get my hands on a copy.

Pinky

[Pinky]

Dr. Scheffer Tseng?

Does anyone know where Dr. Scheffer Tseng is currently located?

[Star]

DHEA eye drops

I participated in the Allergan Phase One Clinical Trial studies for the DHEA eye drops. I was diagnosed with Sjogrens at 32 years old and have severe dry eyes. I am now in my 40’s and am not androgen deficient. After using the androgen drops I was given in the study for one month, my eyes experienced a miraculous recovery to post Sjogrens status. My tear break-up time increased 5 x’s. I had approximately 12 dry islands per eye which was reduced to zero. Every test I took, and there were multiple test, were dramatically improved. I had blood drawn at every visit and my hormone levels did not change. I cannot tell you the joy I felt at being normal. I could actually have wind blow in my face without turning the other direction in fear my eyes would become like a fish out of water.
I work an average of 10 hours a day with 50% being spent on a computer. At the end of the day I did not feel tired and my eyes were not in a constant state of burning. I had reached Nirvana. Then the day came when I had to give back all the drops as my phase of the trial was over. It was the most depressing part of the trial as I returned to the stinging, red eyed monster state of being. I began using Restasis while I was waiting for the DHEA drops to be released, over one year ago and as of this date, I have not had any improvement. Restasis does cause my eyes to burn for up to one hour after usage. That means you begin and end your day with your eyes feeling like acid is floating in them. Not a great mental start for the day. Now I am learning that the DHEA eye drops will most likely not be released. Trust me when I say that these drops had miraculous results for me. The physicians I have contacted will not write a script in fear of being sued since this is not FDA approved. Does anyone know of a clinic or physician in the Southern California area that is versed with compounding DHEA drops and not afraid to write a prescription?

[Rebecca Petris]

Star, welcome, very interested to hear your story. I have heard from others with similarly dramatic results. It's wonderful when there is such a close match between what you need and what a drug does... wish it happened more often for dry eye folks.

Have you contacted Chuck Leiter at Leiter's compounding pharmacy in San Jose (leiterrx.com)? I should think if anyone knows he would. Also, you could contact David Sullivan's group at Harvard where they developed this - I should think they would try to help.

[texaseyes]

DHEA eye drops

Why aren't the DHEA eye drops going to be released? Is that a done deal?

Star, have you tried 2% testosterone cream on your eyelid? I'm curious because some other person from DEZ in the past had that work for them.

Texaseyes

[Star]

DHEA Eye Drops

I will try the testosterone cream if I am unable to obtain a prescription for the eye drop compounding. Obviously, I would rather go with a proven methodology.
As far as Allergan not releasing the DHEA eye drops…it is rumor, but from a reliable source. I don’t know if it is a done deal but it will not be soon. It takes an enormous amount of money to complete all FDA trials and then to bring a product to market at a given price point to make a profit. Remember…it is all about profit. Allergan spent enormous capital on bringing Restasis to fruition. It may not be advantageous to bring out a competitive product at this point.

[Rebecca Petris]

The rumor has been around for probably at least a year. I've heard various stories - ranging from poorer than expected results to the business explanations and the truth may have elements of both. I have not paid too much attention the last several months but when I first heard it I was following the Allergan quarterly investor calls and they did not even mention androgen which is unusual for something under development in a major growth area.

Star, hope you saw my message re Leiter's.... Have you already tried Doheny?

[sazy123]

Aren't allergen developing androgen drops not DHEA? Whats the difference?


Leiters pharmacy will be able compound you DHEA drops no problem, i tried them they didnt help me.

Remember…it is all about profit. Allergan spent enormous capital on bringing Restasis to fruition. It may not be advantageous to bring out a competitive product at this point.

I would thought that it would be advantageous to bring a competitive product out right at this point as there is currently no other RX products out there to compete with restasis. By the sounds of it, most dry eye patients clamber for restasis, whether it will benefit them or not, as it is the only effective drop to treat the cause everyone wants to try it (and i dont blame any of them), despite the fact it only showed benefit in 15% of cases. I expect the next effective rx drop to treat the cause will have the same effect, it will fly out the stores. And i think the developers know that. We know alot of people have benefited, its wierd that they havent realised a press realise to their investors.

Oh i just realised allergen developed restasis and androgen, but theres still all the people who give up restasis because it didnt help. These same people will want to try something else.