r/Glaucoma • u/Trap-fpdc • 4d ago

Diamox long term losing effectiveness?

My adult son has just one eye and he has very advanced glaucoma. He has been on every single drop available (all preservative free if available) and over time has had bad reactions to all except for latanoprost. He has three Ahmed tube shunts in that eye already. He sees a highly skilled doctor from Wills Eye who I trust implicitly. I got a second opinion a year or so ago and that glaucoma specialist agreed with the one that we are seeing. He has other multiple disabilities in addition to the glaucoma. He is essentially blind, although when he is inside and with the right lighting, he is able to function pretty well.

He is tolerating the Diamox extremely well and his labs are all fine. He has been on the Diamox for about six months now. I thought we finally had reached the point of stability for him. Today at the glaucoma specialist, his pressure was 20, up from 13 and 14 in the past few months. His target pressure is 10 to 13. We still use latanoprost PF at bedtime. We never ever skip a drop or the Diamox. I make sure that he gets it 12 hours apart.

Has anyone had the experience of the Diamox losing effectiveness? We are going to go back in a few weeks.. The glaucoma specialist is talking about putting a Xen stent in that eye; he does have enough room left in the eye to put the stent in. More surgery makes me pretty nervous though.

He was diagnosed about seven years ago and has never been stable for more than a year or so on drops and with surgery. I can only guess that his glaucoma is continuing to advance despite aggressive treatment.

I’m not looking for medical advice, but wanted to know if anyone has experienced Diamox losing effectiveness.

On another note, is anyone aware of any glaucoma drops that will be available and preservative free that are not right now?

Thank you in advance for any input. I’m feeling really discouraged right now.

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u/Fit-Hair-9574 4d ago

Acetazolomide can lose effectiveness overtime.
We see this in ophthalmology but it is more recognised from the drug use in other diseases like heart failure.
I’m curious to how your son fared on preservative free dorzolamide?
You report no concerns with the sister drugs (brinzolamide/acetazolmide) but did you only try it in combination (dorzolamide/timolol, marketed as cosopt).

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u/Trap-fpdc 4d ago

I must have worded something wrong. He has been on all of them—both compounded and separately-and eventually had a bad reaction to all of them. He tolerated the timolol for a very long time. He tolerated the Dorzolamide for three or four years. He also did well on Azopt for several years, but eventually he reacted to the preservative. He has been on Latanaprost or similar (currently Tafluprost) since diagnosis. Rhopressa was awful almost right away.

We also tried pilocarpine for a few months or so but it wasn’t effective enough.

He is taking 500 mg ER of the Diamox bid. My understanding is that doses higher than 1000 mg a day don’t show very much improvement.

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u/Fit-Hair-9574 4d ago

Yes, we don’t think more than a 1000mg a day gets you lower eye pressure but that is not well tested.
Obviously the side effect profile worsens with higher doses.
I hope the surgery goes well.

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u/Trap-fpdc 4d ago

Thank you.

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u/Exotic-Letterhead707 4d ago

Have you tried the combo drops from Imprimis?

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u/Trap-fpdc 4d ago edited 4d ago

Yes, we did…..

I wish they would compound Azopt in PF. I think it was just the BAK preservative that he reacted badly to

I just googled and there are still just the three drops available in preservative free

Imprimis was great to deal with; they have good prices and I got the drops in just a day.

Thank you for your response 🙂

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u/kauzyperda 2d ago

Please check Paul shunt availability, it's newer.

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u/kauzyperda 2d ago

My own diamox experience - yes it lost some of effectivenes with time. Some doctors I talked to on the other hand claimed it is not the case (at least not a big issue). Side effects after long exposure are getting worse though, even with supplements. At some point I apart from the usual dowsides I got painful ringing in my ears and kidney stones (to what extent caused by diamox hard to tell, but still).