Being diagnosed with macular degeneration is not fun

[Wrknrvr]

  I was diagnosed with macular degeneration in the beginning of September of 2020. I have been getting a shot in each eye since then every 8 weeks. This is not fun.

  In another part of these forums I have been unknowingly documenting my time with macular degeneration. It has been sorta frustrating as all my life I helped people and now when have retirement time, now I need to deal with this.

   But I have searched the net since my diagnosis.

 I will follow with a posting about some of what I have found.

 

   Vern.

 

[Wrknrvr]

 This is the beginning of what I have found. It may only help one other person. But it has helped me. I have been taking one 81 milligram dose a day. For three weeks 

  just my thoughts, Vern

 

  well now I cannot copy to this post, but will try some  other way to post it here.

 

Edited January 27, 2022 by Wrknrvr

[Wrknrvr]

Case Reports

 

BMJ Case Rep

 

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. 2021 May 19;14(5):e242987.

doi: 10.1136/bcr-2021-242987.

[Wrknrvr]

Well this posting stuff can be frustrating.   I have tried to copy and paste from the National Institute of Health and I cannot paste it here.

  I will ask for some help to get it posted on the forum.

 

   Confusing,   Vern

[somewhereinusa]

I have WMD in both eyes and have been getting the shots for 4 years now. Started off every 6 weeks and gradually stretched out to 12. I had a scare about a year ago and the shots in one eye went back to 8 wks. I'm now back to 12 wks in both eyes.  Doc said I was one of her major success stories because my eyesight actually got better which is pretty much unheard of. Unfortunately the shots are for the rest of my life.

The worst part for me is the evening after the shot. In varying degrees it feels like sand in my eye and nose won't stop running. Next morning everything is fine.

I thank God that it isn't worse than it is and for the most part hasn't stopped me from doing the things I want. Driving after dark is  pretty much out now but, I don't think that is entirely the WMD.

Good luck with your treatments.

Dick

[Randyretired]

This is interesting.  The eye doctor said I have the beginning of this in my left eye.  I guess for now we are watching it progress until treatments are necessary.

[Wrknrvr]

  https://pubmed.ncbi.nlm.nih.gov/34011649/

 

  I may have figured out how to post this.

 

  If anyone can find this please let us know.

 

 What I am trying to post is from the National institute of health. I am not very good with computers and I will admit that.

   I believe what I am trying to post is locked. So no access to copy and paste it.

[justRich]

Abstract

This is a case report of central retinal vein occlusion (CRVO) associated with COVID-19 treated with oral aspirin therapy. A 56-year-old woman reported decreased vision in her left eye. Her left eye vision was 6/18, N10. Anterior segment was within normal limits. Left eye fundus was suggestive of CRVO and macular oedema. Optical coherence tomography showed cystoid macular oedema and neurosensory detachment. Blood work-up revealed elevated D-dimer levels and erythrocyte sedimentation rate (ESR). She was started on treatment with low-dose aspirin 150 mg/day. After 1 month, her vision improved to 6/6, N6. Left eye fundus showed reduced retinal haemorrhages and complete resolution of macular oedema. Her repeat blood work-up showed reduced D-dimer and ESR levels. The patient was asked to be reviewed after 3 months. This case highlights that specific treatment for reducing the hypercoagulable state caused by COVID-19 with oral aspirin therapy can result in complete resolution of CRVO macular oedema.

[somewhereinusa]

1 hour ago, Randyretired said:

This is interesting.  The eye doctor said I have the beginning of this in my left eye.  I guess for now we are watching it progress until treatments are necessary.

Did he say Macular Degeneration or Wet Macular Degeneration. My understanding is that MD does not necessarily turn into WMD.  My understanding of WMD is that the blood vessels in the macula burst and bleed, thus the wet part. The shots are to keep it from getting any worse. 

[Randyretired]

He just said macular degeneration.  So far he said just one eye.  

[GlennWest]

I got it in right eye but they stated until he can't get vision any better than 20/50 with lenses no surgery. Mine is dry. Also told me after surgery it will never be 20/20 anymore.

[justRich]

ClinicalTrials.gov: https://clinicaltrials.gov/ct2/home
Best of luck everyone.  There's a bigger battle going on than any ever waged on the planet.

 

[GlennWest]

They showed me an image of my macula. It is ugly. Looks like it was in a fight and lost. Very irregular surface. Catches images at many different angles. That why I have double vision. As of now I am nearly 20/20 with my glasses. I was difficult to find an optometrist to help me. Everyone saw problem. They just could fit me with glasses to correct vision. I was just before giving up welding. 

[Kirk W]

56 minutes ago, GlennWest said:

I was just before giving up welding. 

Do you suppose that welding so much could have been at least part of the cause of your eye problems? Many years ago the Navy spent a lot of money and 6 months of time to train me as an emergency welder on submarine nuclear power plants. I never did weld on any power plants and only twice welded anything for the Navy. I did weld a broken frame that held up a clothes dryer once and another time I repaired some stainless steel shelving for the cooks. Since I left the Navy I have only rarely done any welding and sold my welder when we moved to TX. 

[GlennWest]

Being it is in one eye only, don't think so. It being in one eye only implies some outside force caused it though. He thinks some trauma caused it. I don't recall any. I do get flashed from time to time but both eyes are open. 

 

 

 

 

 

 

 

 

[somewhereinusa]

My optometrist told me that there are three major eye problems, macular degeneration, cataracts and glaucoma and everyone gets all three if you live long enough. There are probably as many opinions about it as there are doctors. 

My understanding of MD or WMD is it isn't anything you have done, it just happens. One information I read said that people with blue eyes, me, are more likely to get WMD. I have done a fair amount of welding in my time. Also if it is a part of an automobile I have probably had it in my eye, and mouth at some time or other.

 

[GlennWest]

I also have the beginnings on a cataract in same eye. Lucky me.

[Kirk W]

Wife had cataract surgery on both eyes back in 2014. Prior to that she was near sited and glasses required on her driver's license but the surgery corrected that and for the first time she doesn't have to wear glasses to drive! With cataracts they remove the lens and replace it with a manmade one. 

[Randyretired]

Cataract surgery is quite common and pretty simple.  The results can be spectacular.

[GlennWest]

Not with AMD. It is impossible for a contact to correct my eyesight. Macula the problem, not the lense. Eyesight pretty good in left eye.

[Hill_Country]

Let me add a data point or two.

I was diagnosed with dry MD in my left eye and wet MD in my right going on five years ago.  No progression in the left - which is good because there isn't much they can do for dry MD - and the problem in the right eye has largely resolved although I do continue to get a shot in that eye every six weeks now.

I did have a bout of glaucoma last year, but it was easily resolved with a quick laser treatment.  A couple of months later the same thing happened in the other eye.  Again, no big deal.

Several people I know have also been diagnosed with AMD and chose not to have it treated either because getting a shot in the eye grossed them out or they had heard that the drugs are ridiculously expensive.  The shot really isn't that big of a deal once you get past the thought of it.  Feels like a grain of sand for a few hours then nothing the next morning.

Some of the drugs are generic and cheap, but some of the new ones are frightfully expensive - if you have to pay for them.  However, the manufacturers seem to have a foundation set up to pick up the cost of anything not covered by insurance - apparently a legal insurance scam.

Bottom line is there is no reason not to treat AMD and a huge reason why not treating AMD is a huge mistake.

[GlennWest]

As long as I can see decent nothing will be done. When lenses don't correct, I will seek treatment. My eye doctor told me never be 20/20 again after surgery. 

[Wrknrvr]

     I wanted to post my latest update on my vision.

 

   I have been seeing a ophthalmologist in Montana since my first eye problems started in the summer of 2020.

   I have been getting shots in both eyes. The right that has dry macular degeneration.

   The left that has wet macular degeneration.

    We went to Truth or Consequences New Mexico for the winter. Was getting shots in both eyes at a ophthalmologist there.

   I started the aspirin treatment of one 81 mg aday, on January 1.   Or there about. 

    I was back to The ophthalmologist in January and February in Truth or Consequences NM. With his new pictures and visual inspection of my eyes. He determined that I did not need injections at that time.

 

    So on April 6th I was back in Montana and went to My ophthalmologist for a visit. Had a eye vision test, they took pictures and he looked at my eyes.  

  I told him what I read on the net.  

   Years ago I did the aspirin thing as being a male, having heart problems in my family tree and under doctors orders. But have quit that maybe 10 years ago as the doc did not think it had any effect for what he was watching.

 

    So My ophthalmologist in Montana said I do not need shots at this time. 

    He is quit confused. Both ophthalmologist I have been to said 30 or more years ago the aspirin treatment was studied. And apparently it did not prove to be effective.

   I was sick in late March of 2020.   I do not know if I had covid or not, back then.  In the next week I will be at my primary care doctor. I know he has had covid at least twice 2020.

   I am going to explain to him what I have been experiencing with my vision.

   I am going to see if they can test to see if I have had covid or not.

  I also noticed that I was having a small problem with focusing with my eyes. Although this did not come to my attention until after about 4 weeks of taking the aspirin.  

 

  Will keep informed as I get up dates.

  Vern

[Rover]

Vern,

Mark has been diagnosed with age-related dry macular degeneration though it is not at the point of needing treatment yet. We looked online for information about an aspirin treatment in reference to AMD but only found where they said it was shown to have no affect. Do you just chew/swallow a 81mg/low dose aspirin daily as you would for a heart condition or is there something else to this treatment you read about?
 

TIA Vicki 

 

[Wrknrvr]

    If you go back towards the beginning of this thread there is a link to first thing I found pertaining to macular degeneration eye problems caused by covid.

 

 R posted it after I put a link to it.

 

   There is apparently some people that can get several different problems in the eye from covid. The info is online. Search for how covid can affect the eyes. 

 

   I had no idea it would help me. But taking a 81 mg aspirin a day sure beats getting a needle in the eye every 6 weeks.

 

  There is a lot more online about this subject.  If you send me a pm with a email address, I will try send the links to you.

   Neither of my doctors understand why it works. As the previous aspirin trials proved it not to work.

 

   Vern

  

   Vern

 

 

   But the covid things has changed some medical thoughts on how to treat  some situations.