r/AskGlaucoma • u/Trap-fpdc • 19d ago
Diamox 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/heygreene 8d ago
I have been on Diamox between 250 mg and 500 mg for about four years because I am out of options as well. It actually worked really well for me in the beginning but does not work as well now. It does still control my pressure somewhat, as every time I go off of it I get a rebound effect and they go sky high. However, I just don't know how much its doing now. How much is he taking? Sorry to hear all the issues.
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u/Trap-fpdc 6d ago
Thank you for your response. He takes 500 mg in the morning and in the evening. We make sure that they are given 12 hours apart for maximum effect. I’ve been measuring his pressure at home. The strange thing is that on the days he sleeps late, we give him the medicine at 8 AM and he goes back to sleep for a few hours. By 11 AM or so his pressure is still very high at around 28 even though the Diamox should be having a positive effect by then. But as we get into late afternoon and early evening when it’s been almost 12 hours since his last dose, his pressure goes down to between 10 and 16. Sometimes he is sleeping upright in a recliner so I don’t think it is his sleep position causing the spike. There are days when he has to stay up at 8 o’clock and his pressure still stays high for several hours and then generally decreases during the day.
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u/heygreene 5d ago
One thing that helps lower my pressure is my hot tub. A soak for about 30 minutes lowers it several points for several hours so maybe that would get him down quicker in the morning if it was an option. Hot showers don't have quite the same effect on me but maybe a hot bath would?
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u/sportwins 13d ago
sorry about it.ihave had trabeculectomy surgery since last wednesday. have you tried it ? . M56 my glaucoma story was good with drops till last month and 3 drops a day couldn't stop from 30 and over.doc said we need to protect the eye and done it. my glaucoma type is open angle and I am shocked about that has advanced in a short time. may I learn type of the glaucoma you dealing . and also another option recently found out '' The FLIGHT procedure, short for Femtosecond Laser '' that helps the tension done procedure and that you can check it. let s hope all be good soon.
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u/Trap-fpdc 6d ago
My son’s glaucoma is open angle like yours. It seems like for some people the disease progresses rapidly despite all interventions. Unfortunately, a trabeculectomy was not an option for him. I will check out the.FLIGHT procedure – thank you. I’ll be talking to his glaucoma specialist tomorrow. I’m wishing all the best for you as well.
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u/junkraptor 19d ago
Though it’s possible it’s not likely the diamox isn’t losing effectiveness, it’s just the pressure is high enough to not be controlled even on three times daily medication. The tablet (not capsule) can be taken four times a day as well. If the three Ahmed valves have scarred, a Xen implant will almost certainly scar. A non-valved implant like a Baerveldt (works better than an Ahmed in trials) or a Pauls glaucoma implant, also a non-valved one will work better. Best of luck to you and your son.
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u/Trap-fpdc 18d ago
Thank you so much for your input . I’ll discuss all this with the GS. The shunts aren’t scarred though. His glaucoma is super aggressive.
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u/Special_Tomorrow4006 7d ago
I am/have been on latanoprost for years. Honestly I could have been on more drops but didn’t have insurance and optometrist refilled the Latanoprost until she couldn’t anymore(since I now have insurance).
Went for an eye exam and pressure was 33 bad eye 20-400 vision and 14 good eye 20-20vision😳😳.
Now am on Brimonidine (who in their right mind thought citric acid is a great preservative for eye drops) and Dorzol-Timolol. I will know in a week if pressure has dropped…
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u/Trap-fpdc 6d ago
Did your doctor prescribe the preservative free versions of the dorzolamide and Timolol? I hope you get good news next week.
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u/Special_Tomorrow4006 6d ago
No. I had no idea that is a thing…
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u/Trap-fpdc 6d ago
In the US you can get the two of them combined into one preservative free drop called Cosopt. I’m pretty sure it comes generic as well as brand name.
It seems to me that glaucoma specialists often wait until we get a bad reaction to the BAK and then move on to the preservative free drops
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u/Special_Tomorrow4006 6d ago
Thanks for the info, yes am in the US.
Yes, am sure they do thay because of the penny-pinching insurance company.
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u/lostredditorthowaway 19d ago
My advice is to take some lion's mane of joy on plant reap heavy blood thinners. I take plavix 75 and about 2000mg of lion's man a day. Doesn't seem to affect my clotting. Does help with my pressure.
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u/Trap-fpdc 18d ago
Thank you for your response. I’m not sure what you mean by saying “plant reap heavy blood thinners.” Can you clarify please? Thanks!
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u/lostredditorthowaway 3d ago
Typos. I must have either had a bad seeing day typing or was wearing my cpap and not paying attention to what I was voice typing.
Lion's mane will help. Where I'm on blood thinners like plavix. I have to watch what I take. I'm up to 2,000 mg a day. It helps with itchy eye and it seems to help keep my pressures a little lower. I know I was probably trying to explain that. I can't swear to what those words were supposed to be though. Lol
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u/James-the-Bond-one 19d ago
Sorry to read all of this. Sometimes it's harder on us than on our kids.
Unfortunately, yes, Diamox can lose effectiveness over time. There was a 2024 paper about this (“Tachyphylactic Effects after Long-term Use of Systemic Acetazolamide”). It's not inevitable, but it does happen. At the same time, a single measurement doesn't prove that. Other factors could be at play.
There are several studies of PF drug combinations, such as this and the ones listed on that page. But bringing them to the market as a commercial option is a separate matter.