Originally posted by LaDiva
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Oh absolutely, Jude- cap that vial, stick it in the fridge and squeeze every drop out!
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Claire, I'm glad to hear that you are having some success with the IPL treatments. If I can't get testosterone cream, I may consider IPL too. I have already spent so much money on glasses, thermo eyes, eyedrops, etc looking for things that will help, that I am reluctant to lay out so much for IPL treatments, but if I get desperate enough and nothing else is helping, then I will try them. I guess there are no silver bullets, you have to have patience with everything you try. Even with Restasis, people are telling me not to give up on it until I have used it for 6 months. And Restasis is expensive too. It costs me $75/month (and that is with health insurance!). But lately I have been using the same wand for the morning and evening drops instead of throwing it away after each use; this will cut the cost in half.
Judy
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Dear Jude-
God bless you for you're ability to come up with a snappy retort! ( I wish I could do that) I've had 6 IPL treatments for dry eye- finished up in July and will be going back for maintenence appt. Oct 20. Though I continue restasis and systane daily. I could not read or drive for months and of the available stuff, IPL for my eyes has helped the most,. but it takes patience and maintenance treatments.The doctor I'm going to charges 350.00. This is out of pocket. I'm frustrated that some doctors seem to be prescribing testosterone drops or cream and the anecdotal evidence seems really promising while I can't get anyone I've seen to even consider this. Jude, I'll be really interested in what you can tell us. .
Claire
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Thanks for your support spmcc, Tanner and LaDiva!
Tanner, thanks for the heads-up that I could go to the doc that Dr Sullivan recommended and he might not be willing to give me testosterone. I am tiptoeing lightly here, trying not to harm the relationship with my own ophthalmologist over this. He is conservative and not in favor of testosterone as a treatment for dry eyes. I really like him, and he has successfully treated my cataracts, glaucoma and detached retina. I would not want to change doctors, I just want to go to a cornea specialist who is willing to try non-standard treatments for my DES, since my ophth has already tried all the standard treatments.
La Diva, I only do the compresses once a day; it feels good for the 15 minutes that I have it on, but within a few minutes after, my eyes go right back to being dry and gritty again, with blurry vision and light sensitivity. I suppose I could try it more than once a day and see if it is any better. If I could sit with my eyes closed and the warm pads on them all day that would be even better! What seems to have the most effect on me is the humidity and whether or not the sun is out. My eyes are more comfortable in a dark, damp room, and become uncomfortable when the air is dry, when it is sunny and when there is any breeze. The most helpful aid I have found yet are the moisture chamber polarized sunglasses. I think i am going to have a pair made with my reading prescription so I can wear them in stores when I am shopping. I don't have rosacea or allergies, and my eyes don't get red, so I don't think I'm having any allergic reactions to foods, I think mine is due to direct irritation and insufficient tear production (aqueous and meibomian). I'm glad you found triggers, at least there is something you can avoid.
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Thanks for keeping us posted Jude. My gyno said the same thing about taking testosterone, minus the God part. She said it can be a tricky balancing act and that it is not advised. I will try anything that might help my eyes. Please do keep us posted after your October visit. I am rooting for you! Do you use compresses more than once a day? I must use them three times daily, everyday, or things get bad pretty fast. Also, I've gone on a gluten-free diet and am also watching Rosacea triggers. Chocolate is a big trigger. Cutting out gluten has really helped lessen inflammation. Fingers crossed. Hope you get some help.
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I saw a doctor at mass eye and ear who works with Dr. Sullivan and he wouldn't give me the testosterone cream. I am a girl and have been told I have low testosterone. Let us know if you have better luck. I even emailed Dr. Sullivan before and he recommended testosterone. Who knows. Go to the apt anyway and let us know if you have better luck.
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Originally posted by heyjude0701 View PostShe said maybe God did not intend for post-menopausal women to have high testosterone. Though I would have been more comfortable with a statement that "maybe it is natural or typical for post-menopausal women to have lower testosterone," I followed her "argument" and said that apparently god doesn't want post-menopausal women to drive or read.
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I finally had my appointment with the endocrinologist- it took two months to get an appointment. She sympathized with my dry eye problem and did not try to minimize it, but she said it is too risky for a woman to take testosterone because of the side effects and unknown long term effects. She said maybe God did not intend for post-menopausal women to have high testosterone. Though I would have been more comfortable with a statement that "maybe it is natural or typical for post-menopausal women to have lower testosterone," I followed her "argument" and said that apparently god doesn't want post-menopausal women to drive or read. I didn't want to get into a discussion about mixing religion and medicine!! I told her that I am desperate and need some help, so she suggested I contact Dr David Sullivan at the Schepens Eye Research Institute in Boston. I was impressed that she knew about him. I contacted Dr Sullivan to ask if he had any ongoing clinical trials on testosterone and dry eyes in Boston that I could participate in. He did not answer my question directly, but he did refer me to Dr Mark L. Rosenblatt, an ophthalmologist in the Weill Cornell ophthalmology group in NYC, closer to where I live than Boston, who would be able to provide androgen treatment. I made an appointment with Dr Rosenblatt, the earliest he has available next month, Oct 24. I'll report back here after I see him. Meanwhile, I've been on Restasis for 2 and a half months, and I still don't see any improvement. We had a very humid summer, and I think that helped a bit, but now that it is cool and less humid outside again, the gritty, burning feeling in my eyes is back (along with the photosensitivity and blurry vision that never went away, even with the humidity). I have been doing a warm compress with thermo eyes everyday, in addition to Muro 128 ointment at night and Optive and other drops during the day but I don't notice any improvement.
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Originally posted by heyjude0701 View PostWho do you go to for that- an endocrinologist? Do you have one you like?
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Who do you go to for that- an endocrinologist? Do you have one you like?
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Originally posted by heyjude0701 View PostJason, I have a follow up appt with my family doctor next week- he's the one who prescribed the testosterone test. I have a feeling that he may refer me to an endocrinologist, but I'll be interested to hear his thoughts about testosterone treatment. I'll let you know what he says.
One thing I've read with secondary hypgonadism is it can be caused by or cause a pituitary tumor. I just know its an added risk factor. I had an MRI done years ago that was okay. But since I've recently had all of a sudden random dryness that no doc can explain or heard about it happening suddenly. Makes me wonder if there could be a pituitary tumor. As I've read the nerves for the salivary glands and tear producing glands run right by the pituitary gland.
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Jason, I have a follow up appt with my family doctor next week- he's the one who prescribed the testosterone test. I have a feeling that he may refer me to an endocrinologist, but I'll be interested to hear his thoughts about testosterone treatment. I'll let you know what he says.
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Originally posted by heyjude0701 View PostJason, some doctors prescribe another kind of drops to take with Restasis to ease the burning (I think they are steroids) for the first few weeks. My ophth told me not to fill the prescription for the other drops until after I started the Restasis to see if I needed the other drops to ease the burning. The restasis makes the burning a little worse for me, but it is not constant, so i'm just putting up with it. A few times starting yesterday, I got a sudden severe itching and burning in one eye that lasted only a few minutes, and then my eye started tearing a lot. Then the burning, itching and tearing stopped, and it went back to it's normal dryness. Not sure if that is Restasis beginning to kick in, or if something just irritated my eye.
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Jason, some doctors prescribe another kind of drops to take with Restasis to ease the burning (I think they are steroids) for the first few weeks. My ophth told me not to fill the prescription for the other drops until after I started the Restasis to see if I needed the other drops to ease the burning. The restasis makes the burning a little worse for me, but it is not constant, so i'm just putting up with it. A few times starting yesterday, I got a sudden severe itching and burning in one eye that lasted only a few minutes, and then my eye started tearing a lot. Then the burning, itching and tearing stopped, and it went back to it's normal dryness. Not sure if that is Restasis beginning to kick in, or if something just irritated my eye.
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