Dry eye sufferer from Sydney Australia needs advice.

[chapster]

Hi All

This is my first post on this great site so I will provide a brief history. I am a 34 year old male that has been suffering with dry eye for around 16 years. It seems to be getting progressively worse. I used contact lenses from the age of 12 to 32 and am not sure if that contributed to the condition. My eyelids are swollen and I struggle to open my eyes in the morning. I have been to numerous specialists but have yet to find any relief from any treatment. My last visit was about 1 month ago to a dry eye specialist. I was told that I have MGD and my glands are so blocked warm compresses would not help. I have been put on Lotemax to reduce the swelling. I am finding the Lotemax is making my eyes slightly worse. I can tolerate but only just.

Treatments I have tried:
Every eye drop on the market. The only one I tolerate is Refresh Plus
Tear ducts plugged (3 times). Never felt any relief.
Restasis (3 times). Eyes could not tolerate it.
Warm compresses. Can't express any oil. Maybe glands are too blocked.
FML steroid drops. Made eyes whiter but didn't use it for too long.
Hycor (cortisone ointment put in eye). This seemed to help me with night time dryness.
Tranquileyes goggles. I sleep on my stomache causing them to be uncomfortable.

My eyes are always sore and lids swollen. I used to have some good days and some bad days but now I only have bad days.

My questions to all you knowledgable folks are:
1) Should I continue with the Lotemax even though my eyes are feeling worse? Does it take some time for the Lotemax to reduce the swelling?
2) Should I ask the Opthalmologist if he can express my lids? If he won't, has anyone in Sydney had a lid expression done?
3) Any other advice as this condition is really affecting my life?

Just to add to this, my last Schirmer test revealed a reading of 1 in both eyes. I also have GPC. I have never taken any medication that could have caused this and I don't think my glands have atrophied as about once a month I get a tiny blister on my gland and when I squeeze it the oil comes out and I get about 1 minute of relief.

Best Regards,
chapster

[jenny2008]

hey there..
i too cannot tolerate lotemax-it is the BAK preservative in it that disrupts my tear film and makes my eyes even drier. Therefore, my doctor prescribes a non-preserved Prednisol I get from Leiters pharmacy in Cali (not sure where you would get it from in Australia) -anyway, you refrigerate it and it lasts about 30 days...

I would definitely call your doctor and get in there asap before you hurt your eyes anymore.

I get my lids expressed by a doctor about once a month-i also do the warm compress. A good doc will be able to do it and will also be able to tell you if and how much your glands are clogged-when I do the warm compress and massage myself i can never see any oil coming out...

I have sjogrens so that is the cause of my dry eye plus MGD but it goes hand in hand.. I def would get in with your doc and maybe rule out any underlying conditions like autoimmune or any other prescription drugs you may have taken in the past.. i know some people get dry eye from Accutane, etc... some get it from Lasik. I have also heard long wear of contacts can contribute to dry eyes--i wore contacts too but again i have sjogrens..

good luck and keep us posted. i hope you get to feeling better soon..
by the way the only otc. drop i can use is Refresh plus as well. ))
Jen

[Margaret]

sounds similar to my story, I'm just not as severe. Have you tried Doxy? That's what they want me to start out with. It's suppose to help clean out the glands...

[chapster]

Thanks for the replies. Sorry - I forgot to add that I have tried doxy before. It was a few years ago so it may have been before my glands were blocked - not sure though.

[chapster]

Hi All. I have now discontinued using Lotemax as it was making my eyes worse. I am now waiting for testosterone cream and will be giving that a go. Has anyone tried this?

Also has no-one had their glands expressed in Sydney? I would love to find a doc that has done this.

[drrd2005]

Hi All. I have now discontinued using Lotemax as it was making my eyes worse. I am now waiting for testosterone cream and will be giving that a go. Has anyone tried this?

Also has no-one had their glands expressed in Sydney? I would love to find a doc that has done this.

Be careful with the stroids ...maybe ask a ophthalmologist .long term use ... a strict no no .

[chapster]

The testosterone cream is from an opthalmologist. He is a dry eye specialist. Not convinced though as I haven't heard any success stories using this cream.

[jads]

The testosterone cream is from an opthalmologist. He is a dry eye specialist. Not convinced though as I haven't heard any success stories using this cream.

I think it is encouraging (very) that an opthamologist has seen fit to try a testosterone treatment! Everyone's physiology is a little different. Some won't respond as well as others to testosterone cream and may also need other hormone supplementation to provide a better overall hormone balance. For example, progesterone. Estrogen also needs to be kept in check.

Testosterone is not a steroid. What it is, is a steroid hormone. There is a clear distinction. One is naturally produced, the other is an artificial performance enhancer. . Natural hormone treatment given by a specialist or GP is not a danger to your health if given properly. There are plenty of books and information to back this up.

Chapster, I am in Melbourne. I would suggest it is worthwhile having your GP monitor your T levels if your Opto is not doing it as part of your treatment.

Feel free to PM me if you need any other information. I resolved my DES by balancing my hormones.

[andreapandrea3]

I personally have always thought there is a definite hormonal connection with my dry eyes. I cannot speak for or against how to treat it, but I'd be curious to see what results you have!

Lotemax...ughhhh. It's the BAK! My eyes could not tolerate it either. I was also put on Tobradex (twice) and the BAK struck again. Awful stuff.

I saw no results with warm compresses at first. It actually took about two weeks of (almost) hot compresses for 10 minutes, 4 times a day for me to get results. Then...I thought maybe I noticed a difference. Then, another couple of weeks after that, I started feeling results. Now, I can hear the oil squish when I massage and express the glands. It's become a ritual I do twice a day no matter what. And if I don't do it, I pay for it. Not that this is a guaranteed fix, but I thought I'd share my experience. Also, I found a doctor who showed me how to express my glands--hope you have luck with finding one who will express your glands and maybe give some great tips on it!

I was on minocycline (doxy family) for a while...but I had a strange side effect--it started to turn my teeth brown! Apparently this is a rare side effect that does not typically affect adults (usually children, and even then, it's rare). Anyway, I have heard good things about others who used mino or doxy with dry eye (they both had rosacea).

Best of luck to you!

[chapster]

Thanks for the reply jads. I think that due to the fact I have tried so many treatments, I am very sceptical bout anything new. I am debating whether to try the testosterone cream or not. Did you have your test levels checked before you went on the cream? How did you balance your homones? Were your levels test levels low?

Also thanks andreapandrea3. I find that when I do warm compresses it tends to irritate my eyes a little more. If I know that I would feel some relief after a month of doing it and that I can unblock my glands then I would probably be willing to give it another go. Has anyone else had no success with compresses for weeks and then been able to express them like andreapandrea3?

[Lfarls]

Have you ever tried cold compresses to decrease the inflammation? I have ocular rosacea/ MGD and my main problem was the constant swollen eyelids. I find that if you already have swelling and apply heat it makes the swelling worse, which in turn doesn't help the glands open, it promotes more inflammation and they continue to be blocked. The cold decreases the inflammation and in turn gets the glands working better. At least for me it does. I also have had three IPL treatments and this has helped me the most. I've tried almost everything you described, the only thing thats has helped me with the horrible swelling is cold compresses and IPL.

[jads]

Thanks for the reply jads. I think that due to the fact I have tried so many treatments, I am very sceptical bout anything new. I am debating whether to try the testosterone cream or not. Did you have your test levels checked before you went on the cream? How did you balance your homones? Were your levels test levels low?

Chapster, I would totally understand the frustration. I too felt like I was trying everything out of desperation!

I didn't use any cream on my eyelids so I can't comment on that path but what I did do is change my diet and clear the estrogen build up. In doing so I lost 5-6 kilos and balanced my hormones that way: from within.

There is an important correlation between estrogen and body weight - and androgen hormones: as estrogen rises, due to high food source intake and external environmental factors, you gain weight. An enzyme called Aromatase which is found in fat cells converts androgen hormones such as testosterone to more and more estrogen. The more overweight a person is the more Aromatase they have and the more hormone building blocks are converted to estrogen instead of the other hormones we require naturally day to day. It becomes a vicious cycle of sorts! The result is 'estrogen dominance' and is becoming increasingly common.

Obviously a poor diet compounds the whole cycle causing more weight gain, insulin resistance and so on.

In many ways, the aim is not to go crazy specifically boosting testosterone, spending hours in the gym etc (though exercise is important) or buying lots of supplements, BUT clear the bad estrogen from your diet and eat whole, nutritious foods as much as you can. Alternatively, if your Testosterone is tested and chronically low, then hormone replacement may be need in consultation with your GP or urologist.

Hope that helps. Feel free to PM me for any more info - no problem. I've been free of DES now for almost two years after being at my wits end for at least 4 yrs.

cheers