Progesterone & Testosterone eye drops

[heyjude0701]

The drops are not yet helping with the dryness. I don't know if there is supposed to be an immediate effect, or if it takes months like it does with Restasis. Judy

[jenny2008]

Jude -are the drops helping with the dryness?? what do they do? help keep the glands open?? thanks!

[DCRdryeye]

I agree that four times a day is way too much. One of my ophthalmologist instructed I use cyclosporine drops four times a day but I could not handle it. My eyes were red and remained red and sore inbetween dosages. So I am only using it twice day now and it's much better now.

[heyjude0701]

It was worse yesterday than it is today, so maybe my being very careful to use a tiny drop and not let any drip or rub onto my eyelids is helping. Or maybe my eyes are getting used to it

[bunnyrabbit123]

Jude,
Would you consider cutting the dosage down to maybe 2x a day now- or buffering with otc preservative-free drop before putting in DHEA drops? When do you see Dr. R. again?

[heyjude0701]

The testosterone drops I'm using are DHEA 1% solution. This morning I was very careful to use the tiniest drop, and so far my eyelids aren't worse. It might be that four times a day is too much. the opth said that after the first week, I should drop down to three drops a day. I think I just have to be very careful not to use too much and not to rub my eyes with a tissue after. Maybe gently blotting will keep it from getting on my eyelids

[DCRdryeye]

That's disappointing news to hear jude. I use Restasis and couldn't imagine applying anything that burns more. Can't they mix the DHEA formula with gentler ingredients, or is it the DHEA itself that causes the burning? Only the researchers and compounders would know.

Have you tried Testosterone drops or cream jude?

[heyjude0701]

Thanks, sunshinelover and bunnyrabbit! The DHEA drops burn very badly when I put them in, but the burning goes away in a minute or two. But my eyelids have been itching something fierce and they are red and puffy. I wonder if there is some soothing cream I can put on them. I don't want to stop the drops, I really want to give them a chance to work. I've been trying to use the tiniest drop that doesn't run out of my eyes, and I'm not rubbing them afterwards, I don't want to irritate the lids even more. If this is a common side effect, this may be why Allergan hasn't marketed them yet. The burning is worse than it was for Restasis when I started using it, and worse than the Muro123 drops. Judy

[heyjude0701]

I don't know what the cost in Australia will be, but the compounding pharmacy in the US that made my DHEA drops charged $90 for a one month supply. It is not covered by my health insurance. But I don't think that is too bad, since my co-pay is $75 a month for Restasis, which is covered by my insurance. The Restasis doesn't really cost me $75 a month, though, because I use each wand for 3 applications, so it lasts much more than a month. Judy

[jads]

Hi DCR, you've touched on the key thing there.... finding a GP\ specialist who understands hormones and often they seem to be more in functional or integrative medical practices.

Hopefully your treatment won't cost too much! Maybe medicare will reimburse you for a %.

[DCRdryeye]

Jads - I absolutely agree with you. I have located a doctor in Australia who specializes in hormones and wasn't scared to write me a script for testosterone cream and DHEA drops. I nearly fell off my chair when he agreed. But I am yet to hear from the compounding pharmacy he deals with to pay them, I don't know the price, so I might fall off my chair again!!!

[jads]

I am guessing that in 1-2 years there will be a reasonable market for hormone-based drops and\or topical T creams for the eyelids. Just how available or expensive these treatments become remains to be seen.

I believe the reason this treatment option is slow to gain momentum is that specialists and doctors are typically loathe to mess with people's hormones unless the problem is critical. Just the term, testosterone scares most people due to the common misconceptions about it eg...steriods, bodybuilding, aggressive behaviour and so on.

[bunnyrabbit123]

Same here, Judy. Wishing you success with this-please keep us updated.

[sunshinelover]

That, s great Judy! Hope it works out for you too! Post back and let us know how it goes.

[heyjude0701]

Checking in again re: testosterone. I took the Azasite drops for a month, and other than the burning and stinging when I put in the drops, there was no change in my DES. I went for my follow up with Dr Mark Rosenblatt at Weill Cornell in NY, and this time he prescribed testosterone drops (DHEA) in a 1% solution. He ordered them from Leiters compounding lab in San Jose, and I received them in the mail yesterday. The starting dose for the first week is one drop in each eye four times a day. After one week, the dose drops to three times a day. In three weeks I go back to see him. He said that there is very little experience with testosterone drops and dosing but he is hopeful based on two other people he has prescribed it for in the past. So far, it stings very much when I put the drops in my eyes, but I am willing to endure the stinging (it goes away in a minute or two) if it will improve my DES symptoms. Fingers crossed!
Judy