Glaucoma eye drops

[Eyak1971]

Since my diagnosis of glaucoma my eye specialist has prescribed several different types of drops. Some have interacted with other medications that I take. I am now on latanoprost but like most eye drops it can be toxic long term especially with kidney disease. Any transplant patient with glaucoma have a drop that worked well for them? Presently looking at mig surgery as an option.

[Darlenia]

Hubby takes dorzolamide timolol to reduce eye pressure, It's affects both the liver and kidneys. So, not ideal, but his labs are stable. He also takes prednisone eyedrops. He'll be on one or both for life after the shingles virus managed to breach the barrier into his eye - it's permanent The choice for my hubby is easy - blindness vrs sight. Ironically, the drops are speeding up cataract formation, so he's hoping to undergo cataract surgery soon. But that requires "nuking" the shingles virus even more to keep it as dormant as possible. We'll be asking the cataract surgeon if s/he can also reduce the pressure inside the eye while placing the new lenses. Our retina specialist thinks it's unlikely.

[Eyak1971 in reply to Darlenia]

Wishing the best for him. Thank you for sharing your story. Note prednisone eye drops escalated my glaucoma but I understand his situation is far different.

[Darlenia in reply to Eyak1971]

You're right about that. The prednisone is necessary to keep the shingles infection down, difficult to accomplish with him on immunosuppressants. Our specialist is hellbent on keeping him from going blind. Apparently that can happen fast - it comes in from the sides. But, gosh, his meds also increase the cataract situation - so that causes poor vision too. It's a balancing act. Wishing you good luck too.

[Eyak1971 in reply to Darlenia]

Medication and treatment is a balancing act for many transplant patients and in your husband's case it is even more difficult. These are the stories you never hear before transplantation, but I guess life is a roll of the dice. He is lucky to have a supportive wife. May your journey together get stronger and better.

[RhenDutchess123]

I have glaucoma...last summer I had the tubes put into my eyes. ( under my eyelids so can't be seen)...it helps keep the pressures low...has worked very well so far...no drops needed

[Eyak1971 in reply to RhenDutchess123]

Thanks for sharing. Hope I have the same success. Mig surgery in a few weeks.

[Jayhawker]

I take dorzolamide timolol. My opthamalogist has reached out to my transplant team about this medication. They have approved it for me. My opthamalogist is such a great doc; he networks with all my doctors a minimum of 2 times a year.

Jayhawker

[Eyak1971 in reply to Jayhawker]

Sounds like a great eye doctor. I had to switch mine because he over medicated me on steroid drops and made my glaucoma worse. In fact was not diagnosed with glaucoma until I went to new one because old one did not take in account my last lasik surgery when determining eye pressure. I have reacted poorly to all eye drops and am now scheduled for mig surgery that the eye doctor says it's 50/50 as to success and now I am concerned if medicare and supplement will cover. Thanks for sharing.

[Jayhawker in reply to Eyak1971]

I’m just shifting to Medicare with Plan F supplement on August 1st. (I just retired July 3rd and have work insurance through July 31st.) So, I’m about to enter the world of the unknown with insurance too. The insurance consultant the transplant center referred me to was excellent. He thinks Plan F should cover the remaining 20% of anything Medicare covers. But, frankly, I won’t know until I start working with it. Ugh…

However, my ophthalmologist is truly a gem. In many ways he’s the best member of my care team. My practicing nephrologist is also excellent. I’ll finally see him for the first time since the transplant on Thursday this week. The transplant center started what they call share care on my treatment about 3 months ago. I’ll now see my regular nephrologist every 6 months and the transplant center every 6 months. I’m excited about this. My regular nephrologist has transplant center experience—quite a lot of transplant experience. He’s sharp and has excellent patient rapport. No matter how bad it is, he handles treatment well and calmly. He’s got a good sense of humor too. So stress level is much better. Plus he collaborates with other doctors across specialties and medical organizations. All of this has been questionable with the transplant center team, unfortunately. My hematology oncologist (for the T-LGL Leukemia diagnosed early last December) has already reached out to him and begun working with him on my case specifically because my oncologist was running into so much difficulty with my transplant nephrologist. Share care will be much better!

Jayhawker

[Eyak1971 in reply to Jayhawker]

Sounds like you are working through the process with good support. Share care sounds like an excellent system. Too bad that all doctors do not work with this concept. It's great to have specialist but trying as a patient to educate doctors how the whole body is connected gets frustrating. You think they could use Google like everyone else. I have gone through several eye drops that have affected my heart rate, my blood pressure, and my nervous system. Just by googling I have discovered that they do just that if you are on certain medications. Some doctors ask for your medication lists but really know really little how they interact. If I hear one more time that eye drops are such a small dosage that they will not affect you or that your neuropathy is caused by emotions not by the toxic medications you take, I will blow a gasket. But thanks for sharing and keep me posted how things are going. I have Medicare with a aarp part b supplement so it looks like I will be on the phone this week to check out coverage.

[Jayhawker]

Sorry for this delayed response. I can’t believe how much I’ve been sleeping since I’ve officially retired! Guess I was more exhausted than I realized.

The shared care between the transplant center and my regular nephrologist will last 2 years. Then I’ll be turned over full time to my regular nephrologist.

My oncologist’s office is already working full time with my regular nephrologust. It’s clear they are finding him to be much more responsive than the transplant center too.

Frankly, all my other docs including my ophthalmologist work well together. So, I think this will all calm down considerably as I can transfer to my regular nephrologist full time in another 1.5 years.

Next week I start focusing on transition to Medicare. I’m going to shift my prescription meds away from CVS specialty. They have also been difficult throughout this transplant. Fortunately we have a Walgreens specialty in town. They deliver meds directly to your front door the day the doc prescribes them. They also handle all your meds so you get a tray preloaded with all your meds and times to take each. This is the pharmacy the transplant center typically uses but my work insurance wouldn’t cover it. (Work insurance through CVS CareMarx.) it will be helpful to get meds through a local pharmacy. Plus my Part D insurance would cover meds directly from the hospital pharmacy at slightly higher prices. But that’s another option. My goal is to give my docs as many options as possible…

As far as your comments about eye drops, absolutely. All our bodies are unique. What causes no difficulty for one can cause serious problems for another. Our docs need to listen to us on these issues. In general I won’t work with docs eho don’t listen to me. They also need to provide some patient education during each appointment. When I understand more I’m better able to take care of myself at home.

Jayhawker

[Eyak1971 in reply to Jayhawker]

Thanks for the update. Sounds like you life is still hectic but you sound like you are working it out. Take care and keep us updated whenever the opportunity arrives. I am waiting for a second opinion at a hospital eye clinic in treatment options. I decided that route after talking to a couple members of a glaucoma group I have joined since diagnosed.

[GemLvr]

I too have Glaucoma that came along for the ride with my auto-immune kidney disease. Transplant 2 years ago.

I use latanoprost once a day in the evening and Dorzolamide- Timolol twice a day. I do my eye drops with my meds twice a day.

My glaucoma specialist knows about my kidney journey and my transplant team knows about the drops. I have asked both about any contraindications between the transplant meds and the eye drops and both have assured me that there are no problems.

I hope this helps. My pressures stay about 13 in both eyes so my eye doc is happy with this combination.

[Jayhawker in reply to GemLvr]

Thanks for sharing this!

Jayhawker

[Eyak1971 in reply to GemLvr]

Thanks for sharing. I am presently on latanoprost but had to keep it to every other day because the preservative bak in it is toxic which adds to the toxicity in my body with a history of taking tacrolimus and allopurinol and resulted in neuropathy. The other medication you mentioned is a beta blocker and reduced my heart rate to a very severe low level because I was already on a beta blocker for high blood pressure. I also tried two other drops. One resulted in allergic reaction and the other extreme high blood pressure. So now I am looking at surgery as an option. Since I had lasik years ago my iop has been misread for years and only recent has been read accurately. Many eye doctors do not take this in to account. Keep me posted as to your progress.

[GemLvr]

Wow, that is a tough spot to be in. You’re correct when you say most aren’t aware of this problem - and I certainly didn’t know how problematic these drop could be.

I had a laser procedure done on one eye to help lessen the pressure, I’m sorry I don’t recall the specifics. But I had heard that laser surgery to help with pressure is very common so if that’s what they intend, I’m sure you’ll do well with it. For mine, the recovery time was zero and I left not feeling like anything had been done. Good luck!

[Eyak1971 in reply to GemLvr]

Thanks for sharing. My first specialist I has been seeing for 5 years who was monitoring my macular degeneration as I had discovered fairly incompetent and had never taken that fact into consideration even though my lasik had been done in the same center. So he had never diagnosed possible glaucoma and pit me on steroid drops for an eye infection and did not monitor correctly or limit the time period. My iop eventually went too high and caused damage to my optic nerve. His response was worse. He did a laser treatment as you had and again showed his incompetence because the pain during the process was unimaginable. I quickly changed center and reported his incompetence to local state agencies that govern licenses. Investigation is a long process. I reported him to Medicare, but that process was pathetic. Medicare outsource toba private company. And the less time and effort that use the more profit they can make from medicare dollars. A perfect scam. The final report I got look like a high school google search of cut and paste information. I did my own Google research and learned that owner of the company is a judge with close ties the governor of Maryland who is running for senate. Needless to say with any medical problem you often feel that there are those who support you and those that put up barriers that make the problem worse. So as o said in a previous post I am scheduled for second opinion at a clinic associated with a hospital. Maybe the third time will be the charm.