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  • #76
    Originally posted by Dry-eyed-suzy View Post
    Hi,
    I've been on C-DHEA 0.5 % P.F. CMPD OPH. eye drops for a week. They sting & I'm not sure if they work yet. Might be a bad batch. They are compounded by a firm called Leiter's in San Jose, California. Tried Progesterone drops last month. I'm 45. Noticed my DES about 6 months ago but it may have existed prior. Can't say the prog. drops worked well since I am also on progesterone only birth control (for hot flashes etc). I'M NOT MENOPAUSAL. I've explained this to many doctors. low hormone levels & perimenopausal. Never had lasik, never done contacts, have no idea why I have MGD. I have atrophied glands in one eye. no tears at ALL. trying everything since there are crazy pollen levels here. basically burning my face with this eye mask to get oil out. I do have crazy allergies which are under control by various drugs. or I thought they were. This is frustrating to mein that some of these "cures" have been around since 2004, but 2 ophthalmologists I saw have no idea about the DES/MGD field & did not care. they just want to cut on cataracts. * Why isn't more research being done to make our lives better? Is it because it's not sexy or lethal like breast cancer???!! I can barely drive my kids to soccer practice due to blurry vision. Maybe we should get car insurance companies to pay for our cures?! ok rant over. I was hoping to find more info on effectiveness of these hormone eye drops, but nobody seems to know much. At least I found an ophthalmologist that attacks this on multiple fronts. (since she has DES!) I am scheduled for lipiflow later. It will cost me $1700. insurance does't pay for it. why? again, there is no $$ behind research or advocacy for DES or MGD. very frustrated with rich, lazy ophthalmologists these days. and the FDA. new to this arena, but geeky enough to read as much as possible & not go down without a fight. - s
    Good luck with the DHEA drops Suzy. I tried them a while back (also from Leiter in San Jose) and I could not tolerate them, they burned too much and I did not notice any improvement in my DES. I hope you have better luck than I did.

    The reason insurance doesn't cover Lipiflow is because there is no evidence that it works. A few people say they had some success with it, but it required many treatments and the improvement was short-lived. I have had some success with PROSE scleral lenses. It doesn't get rid of DES, but it alleviates some of the symptoms, and lets me drive and read without getting blurry vision. Also, since I have been wearing the PROSE devices, the scratches on my cornea have healed and I have not developed any new ones. Insurance paid for most of the cost of my PROSE scleral lenses. They helped at first with light sensitivity, but lately the light sensitivity has been getting a lot worse. I recently got a pair of amber glasses to filter out the high frequency light, they help a lot in big box stores and supermarkets, but still not perfect; also I wear a visor all the time.

    I am still wondering if there is some formulation of testosterone that could help increase the tears (both the aqueous and the oil layer, I am deficient in both). Hang in there, I hope you will find something that helps (or more like a combination of things). I agree, why is there not more research on this!!!!! Judy

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    • #77
      please tell me how can i obtain these creams? posting this 2015...i live in Europe....i have severe dry eyes,Sogren and menopause and i rewlly rhink rhey could help me...

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      • #78
        Hello fellow dry eyes,
        I'm so thankful for this forum. I first noticed my dry eyes about three years ago. They've progressively gotten worse over the years. After reading Dr. Latkany's "The Dry Eye Remedy", I realized that I have done many things to lead up to my predicament. I wore hard contact lenses for years, had PRK corrective surgery, went into surgical menopause at an early age (38 years), took hormone replacement therapy and finally was diagnosed with Grave's disease. I was also an avide benedryl and ambien user.
        About 3 weeks ago I did Lipiflow. I don't know if it helped at all but I appreciated the thorough exam. I have many atrophied glands and am not producing much oil. I've weaned myself off all sleeping medications and am weaning myself off the HRT. i am babying my eyes and doing everything recommended-----you all know the routine--- warm compresses, blinking excercises, tranquileyes and ointment at night, drops as needed, panoptics glasses, blah blah blah. I keep reading about low testosterone in women who have gone through menopause as a causative factor for dry eyes. None of my doctors have heard anything about this. I even called the local compounding pharmacy to see if they had any patients who used testosterone cream on their eyelids. No luck. My questions are: 1) is there anyone who has had succes with either eyelid testosterone cream or or testosterone replacement? 2) What exactly were you prescribed?
        3) I'm in the Sacramento area.......any Northern Californina docs that are recommended? 4) Did you experience any negative side effects?
        Thank you!

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        • #79
          Yoyobee I am waiting to hear if anyone answers you too! I have also done the treatments that you have tried (except for Lipiflow, I haven't tried that yet). I was not able to tolerate the testosterone eyedrops from Leiter's compounding pharmacy in San Jose, but I have not given up on the idea that testosterone may be able to help. I was tested and have zero circulating testosterone (though I understand that this number is variable and may be different on subsequent tests), and I have other signs of low testosterone- no earwax, no more hair on my arms, underarms or legs (I used to be very hairy). I live on the Monterey peninsula now; I am also interested to hear of any northern CA doctors. My driving is very limited now due to my dry eyes, so unless there is transportation, I can't get everywhere anymore.

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          • #80
            Hello,my name is Lili and i live in Romania ..li have severe dry eyes due to Sogren,but definetely aggravated by menopause ....which i didn,t helped with HRT ( big mistake!) ,now i began Climara patches( estradiol) and want to try some testosteron gel once a week ( a very little amount,the size of a pea ) ...i found a very smart gynecologist who worked in Germany and he said he did that kind of hormonal replacement for many women with dry eyes and it worked. The great problem is to find the right balance between estrogens/ testosteron/ progesteron ( though it seems the progesteron is not involved in dry eyes pathology/// the testosteron is!!abd the estrogens too,) .It,s very important to check the blood level of the sex hormones and see what,s missing...The testosteron gel can be found in Europe,in Japan too ...i took mine from a pharmacy online .About an eye cream with testosteron,this is more complicated,have to find a pharmacy able to do that,but you have in the US some doctors who make it ( dr Connor was the first,dr Jeffrey Dach too ) .Anyway the hormones enter the blood stream ,so if it is a lack somewhere,eventually it will be corrected...but this takes time ...so i don,t think you did good quitting HRT ,maybe it was not well chosen...( there are many different concentrations of estrogen/ progesteron and in Europe doctors use estrogen / testosterone combinations when needed,,,...) . As for me,i,m having big issues with artificial tears,they all harm my eyes ( and nose too,because they stick there somehow and i already have a dry nose too) . I did Lipi Flow // didn,t helped...in fact i think the contrary! i tried Restasis too,can,t bear it...the only thing it helped me were the autolougous serum drops,but only for a short time ( ,they healed my cornea,it,s true) ,but i have togo 800 miles to havethem done and it,s very complicated and expensive ..,

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            • #81
              Heyjude, I am sorry to hear your eyes have gotten so bad that driving is limiting. I can see how that could be. Isn't it nice to have a place where others understand the seriousness of this issue?
              My ophthalmologist hadn't heard of testosterone as a treatment but e-mailed three of his colleagues in New York. I will keep you posted. I have an appointment with my gynecologist on Monday. Lots and lots of doctors appointments.
              One new thing that I am doing is wearing my wind protective sunglasses in the house. They came with a clear pair of lenses. I look like a dweeb but it does seem to help. I also purchased a nice cool air humidifier for the bedroom. All this stuff is costing a small fortune!$$$$. Thanks for replying.

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              • #82
                Lil, thanks for replying. I am in the process of trying to get the serum drops. Do you think they are worth it? He estimated $300 a month plus the cost of the blood draw. If it worked, I would do it in a heart beat. I'm miserable.
                Have you had any negative side effects from the testosterone? I've read it can cause your hairline to recede and acne.

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                • #83
                  yes,it,s worthing...the serum drops can actually heal the corneal ulcers.. they stopped my pains and healed my corneal abrasionts...rhey don,t sting,either...my only problem was with the nose ( i have dry nose too and everything i put in my eyes goes ther and acts like a glue // had to wqsh it with saline solution )) (i had mine done in 20% dilution( there are some who make them until50% / more is dangerous ,because rhe proteins from the serum may precipitate in the eye and make deposits there/ . the ASD are the obly " natural" eye drops for dry eye...all the rest are chemicals... i had to go 800 miles in order to hwve them done,even if i live in the cwpital of Romania,there is noone here to make ASd,had to go in another city,the drops weren,t expensive,but with the whole journey & hotel they cost me 500$ ...... about the testosteron...i couldn,t find here a pharmacy able to do an eye crewm with testosteron...i will try with a transdermal gel / small amount,of course,but i,m a little scared because of the possible side effects.... wish you luck

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                  • #84
                    I just picked up some compounded testosterone that my OBGYN prescribed. It's a low low dose so I am not expecting any of the bad side effects. I'll let you know how it goes. I am also I the process of having the serum eye drops made. I'll let you know how that goes too. Has anyone noticed any improvement by taking doxycycline?

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                    • #85
                      Originally posted by Yoyobee View Post
                      I just picked up some compounded testosterone that my OBGYN prescribed. It's a low low dose so I am not expecting any of the bad side effects. I'll let you know how it goes. I am also I the process of having the serum eye drops made. I'll let you know how that goes too. Has anyone noticed any improvement by taking doxycycline?
                      Good luck with the testosterone and serum eye drops, Yoyobee. Please keep us posted! Doxycycline didn't help me. I took Oracea for a few weeks but all it did was to upset my stomach and I didn't notice any difference in my dry eyes.

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                      • #86
                        hi,is it an eye testosteron cream or a regular one to apply on your skin? and what is the concentration of testosterone ? i spoke with apharmacist here ( i livein Romania) and she said she doesn,t know how to make a testosteron eye cream / never done that! We can find testosteron gels in Europe ,but they are not good for the eyes area...please keep us posted

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                        • #87
                          It is actually Testosterone cream used for low libido. So no, it will not be applied near my eyes. I apply on my inner arms or inner thighs. None of the docs I've talked to have heard of the eye cream. It is a really low dose as to avoid the negative side effects. 1 milligram/milliliter (if I am reading it correctly) Both my OBGYN and the pharmacist said it is just enough to replace the testosterone I am missing since I no longer have ovaries. I'm going to give it two months. It is really hard to be optimistic but I'm trying.

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                          • #88
                            Heyjude, I wasn't too impressed with the Lipiflow. I was impressed with the exam though. They flipped my lids and took pictures of my glands. Turns out I have many atrophied and truncated glands which will never produce oil. The functioning glands aren't clogged....they just don't produce oil. I did purchase a really nice warm compress mask that I just microwave for 20 seconds. It only stays warm for 5 mins so I have to remicrowave for an extra 10 seconds each time. It fits nice and is washable. It's made by a company called Bruder. They sell it online for about $35-40. the exam also recorded my blinking. I was not closing my eyes all the way so being aware of that and fully blinking has helped with the tears.....not the oil.
                            So I give Lipiflow two thumbs down . You could just do the exam for about $200. It did motivate me to take really good care of my eyes......using the night ointment and tranquileyes
                            Gosh, we are all so desperate that we are spending enormous amounts of money.........sigh

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                            • #89
                              Yes ,we are spending enormous amounts of money I gave up on the warm compresses; I had been doing them for a few years and I don't see any difference. The warmth used to feel good on my eyelids, and I would relax and listen to music, but it doesn't feel good anymore so I gave it up. Now cool feels better, so I put the cool AloeMoist cream on them and massage it in. I'm just marking time until I can get another PROSE scleral lens made for my right eye. The clinic in San Francisco isn't open yet. I haven't decided if I should wait until it opens or go back to the tried and true doctor who fitted my PROSE lenses at Weill Cornell in NY a few years ago. That will cost big time because I'm on Medicare now, and Medicare doesn't pay for sclerals. I am also thinking about going to one of the concierge doctors in Carmel, CA ($$$$$$$) who was recommended by a friend. The friend doesn't have dry eyes, but she gets a hormone mix from this doctor for other problems. Since I have no circulating testosterone, maybe this doctor would give me some estrogen/testosterone mix? I am so afraid to mess with hormones. But I think testosterone might help my dry eyes. Maybe if it is a low dose like you are taking, I would not be afraid to try systemic testosterone. I was so hoping that the testosterone eye drops would help, but they burned so badly I couldn't tolerate them. The concierge doctor who I might be able to get testosterone from costs so much money. You have to pay a yearly fee to belong to her "network" and then pay an additional amount for each visit. And of course, she practices medicine completely outside the insurance network, so insurance would cover none of it. There is one eye clinic in Monterey that does Lipiflow. Would it make any difference if I knew whether my meibomian glands are producing any oil or not? Would there be a difference in treatment options depending on the results? It would be interesting to know, but if it wouldn't make a difference (I'm not going to do Lipiflow and I'm not going to have my meibomian glands probed, so I'm not sure it would make a difference if I knew or not). I doubt they are producing oil; I have no ear wax anymore either.

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                              • #90
                                Thank you! Actually testosteron eye cream ( as well as estrogen or DHEA eye creams) can be made in compounding pharmacies...there is a doctor in The US - Brian Boxer Wachler who prescribes testosteron eye cream to his dry eyes patients,i changed mails with his office bcs i wanted that cream,they said a pharmacy is doing the cream for their clinic...i can,t go to Florida ,unfortunately,but maybe you can...

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