Was just diagnosed with glaucoma, need support!

Posted by evw100 @ew100, Jun 8, 2019

I’ll be 79 in a couple of months and my ophthalmologist just diagnosed my eyes “Primary open-angle glaucoma, bilateral, mild stage”. My eye pressures are borderline high, 22.5 left eye and 21 right eye. Since my dad was blind of glaucoma, the doctor wants me to start using eye drops on my left eye only, so he can compare the result of the drops. After using Travatan Z (free sample bottle from his office) for one month, my left eye pressure went up to 23! He switched me to Latanoprost (Xalatan) with the same direction and recheck one month in July.

I was diagnosed with myopic degeneration or degenerative myopia 9 years ago, I also have bad cataracts. I’m praying that Latanoprost drops will bring my left eye pressure down from 23, so the doctor does not recommend laser or surgery as the next step!!! I don’t heal well; I have very weak immune system. I have Medicare, HMO insurance plan.

I would appreciate so much if you would share any of your experiences of your glaucoma treatment journey and the different types of eye drops that you used!

Interested in more discussions like this? Go to the Eye Conditions Support Group.

I was found to have high eye pressure about 5 years ago and was put on latanoprost drops. At first they controlled the pressure but after a few years they seemed to not work as well. My eye doc retired and I started seeing a glaucoma specialist who gave me the laser treatment in the drainage mesh in the corner of the eye. That did not seem to help much with the pressure, as it was up to 26 in one eye and I started to notice a bluriness of vision in that eye. My visual field test last month confirmed that. That much damage is already done! So for the last 5 months I have been switched over to Rocklatan drops which are fairly new and are a mixture of latanaprost and a new drug. So far they have dropped my pressure down in the 14 to 16 range which should be normal and MAYBE stop further damage to the optic nerve.
Has anyone else here been on Rocklatan drops? They have side effects. I have bloodshot eyes all the time and they are often slightly itchy. My doctor just says "better red than dead." What is your experience with these drops?

REPLY
@aaroncush

No worries. Normal tension glaucoma might as well be called idiopathic glaucoma as they can spot the nerve damage but don’t see elevated pressure with it. Treatment is the pressure lowering drops even though not proven to do anything.

Jump to this post

Hi Aaron, it's been a few months since you posted but I just saw this thread.

I have a whole host of "weird-ass" medical issues, including low pressure glaucoma, which is by far the most frightening. No drops prescribed yet. See the eye doc every 6 months.

I have been taking duloxetine (generic Cymbalta), which is similar to Gabapine (sorry about the spelling!) for years now. It did make me dizzy and stupid at first, but those symptoms wore off after a week or two. Maybe give this class of drugs another try? LOL- try the restart during your next vacation?

My rheumatologist and I now are considering low-dose naltrexone for my chronic pain. There is a good bit of info here in Mayo postings. There seem to be almost no side effects!

If you (or anyone else reading this) learns anything new about low-pressure glaucoma, please keep posting!
GOOD LUCK!

REPLY
@annewoodmayo

Hi Aaron, it's been a few months since you posted but I just saw this thread.

I have a whole host of "weird-ass" medical issues, including low pressure glaucoma, which is by far the most frightening. No drops prescribed yet. See the eye doc every 6 months.

I have been taking duloxetine (generic Cymbalta), which is similar to Gabapine (sorry about the spelling!) for years now. It did make me dizzy and stupid at first, but those symptoms wore off after a week or two. Maybe give this class of drugs another try? LOL- try the restart during your next vacation?

My rheumatologist and I now are considering low-dose naltrexone for my chronic pain. There is a good bit of info here in Mayo postings. There seem to be almost no side effects!

If you (or anyone else reading this) learns anything new about low-pressure glaucoma, please keep posting!
GOOD LUCK!

Jump to this post

Thanks. I started LDN about a month ago and, now at 4.5 mg, appears to be helping the pain. I had asked my PCP for it and she agreed that maybe it could help. She also put in for a neuro consult and he suggested LDN too.

I have had to move from taking it at bedtime to around lunchtime to try get around it causing sleep issues - definitely worth a try.

REPLY
@aaroncush

Thanks. I started LDN about a month ago and, now at 4.5 mg, appears to be helping the pain. I had asked my PCP for it and she agreed that maybe it could help. She also put in for a neuro consult and he suggested LDN too.

I have had to move from taking it at bedtime to around lunchtime to try get around it causing sleep issues - definitely worth a try.

Jump to this post

I'm glad that you are getting relief!
How do you get the LDN? I've heard you have to get it from a special pharmacy. I've also heard that most insurance doesn't pay for it.
Thanks!

REPLY
@annewoodmayo

I'm glad that you are getting relief!
How do you get the LDN? I've heard you have to get it from a special pharmacy. I've also heard that most insurance doesn't pay for it.
Thanks!

Jump to this post

I took the prescription from my PCP to my local compounding pharmacy and they filled the prescription. You are correct that insurance doesn’t cover it so now I am shopping around to see which compounding pharmacy is the cheapest.

REPLY

I am taking Lanaprost for Glaucoma. Since then I haven't been feeling
well. Having chills and fatigue daily and just not myself. My medical doctor ran many tests and found nothing wrong. I'm wondering if my symptoms are from the Lanaprost. Anyone else on these drops having side effects?

REPLY
@mabbs24

I am taking Lanaprost for Glaucoma. Since then I haven't been feeling
well. Having chills and fatigue daily and just not myself. My medical doctor ran many tests and found nothing wrong. I'm wondering if my symptoms are from the Lanaprost. Anyone else on these drops having side effects?

Jump to this post

I have been on Monoprost since 2018 Narrow Angle Glaucoma. Monoprost is Latanoprost with no preservatives.
It gets confusing as I have other illnesses and other medications to find out which ones have side effects.
When I went on Monoprost I was upset to read of side effects including change in eye coour , staining of skin around eyes etc., but i made a list of all the pressure-reducing eye drops and all had/have side effects.
While checking I did notice a short article I think from Australia and the man got depressed when started to take the glaucoma meds., went off them and depression went, back on them and depression came back. Documented. I have not been myself since being on the eye drops but also on dry eye drops - they all enter our bodies but again could be fatigue/depression from other sources. Another problem with meds/drops etc. is the "non-medical" ingredients... we could be ok with the medication/s but not the additives and how the heck do we find out. Thing is, once we are on these drops its for life most times, and even though I had the Iridotomies a couple of years ago (tiny laser holes in eyes to avert pressure build up) we still have to take the drops!! I agree with your description : ... just not myself - I feel the same way but dare not stop the nightly drops!

REPLY
@lacy2

I have been on Monoprost since 2018 Narrow Angle Glaucoma. Monoprost is Latanoprost with no preservatives.
It gets confusing as I have other illnesses and other medications to find out which ones have side effects.
When I went on Monoprost I was upset to read of side effects including change in eye coour , staining of skin around eyes etc., but i made a list of all the pressure-reducing eye drops and all had/have side effects.
While checking I did notice a short article I think from Australia and the man got depressed when started to take the glaucoma meds., went off them and depression went, back on them and depression came back. Documented. I have not been myself since being on the eye drops but also on dry eye drops - they all enter our bodies but again could be fatigue/depression from other sources. Another problem with meds/drops etc. is the "non-medical" ingredients... we could be ok with the medication/s but not the additives and how the heck do we find out. Thing is, once we are on these drops its for life most times, and even though I had the Iridotomies a couple of years ago (tiny laser holes in eyes to avert pressure build up) we still have to take the drops!! I agree with your description : ... just not myself - I feel the same way but dare not stop the nightly drops!

Jump to this post

Scientists perform large population studies to determine causation and correlation. For example, our government required large population "clinical trials" of various Covid vaccines being developed to determine which was safest and most efficacious. So that's "how the heck do we find out". We make our own judgements based on limited data and have to deal with such things as the placebo effect where we might think an action causes us to feel differently, but may not be the reason we feel differently.

https://www.khanacademy.org/test-prep/praxis-math/praxis-math-lessons/gtp--praxis-math--lessons--statistics-and-probability/a/gtp--praxis-math--article--correlation-and-causation--lesson
REPLY
@mabbs24

I am taking Lanaprost for Glaucoma. Since then I haven't been feeling
well. Having chills and fatigue daily and just not myself. My medical doctor ran many tests and found nothing wrong. I'm wondering if my symptoms are from the Lanaprost. Anyone else on these drops having side effects?

Jump to this post

@mabbs24, I moved your question about Latanoprost eye drops and not feeling well to this existing discussion where members like @lacy2 @bobweb @ew100 @aaroncush @sueinmn @dsh33782 and others are talking about latanoprost and glaucoma.

- Was just diagnosed with glaucoma, need support!: https://connect.mayoclinic.org/discussion/was-just-diagnosed-with-glaucoma-need-support/

REPLY

I’m 66 and have been using Simbrinza eye drops for my glaucoma for 2 years and it seems to be keeping my pressure down. The only issue I have is the stops make me sleepy so I take them at bedtime

REPLY
Please sign in or register to post a reply.