Deteriorating vision ?

[Alysia]

Hi.
Lately I don't see well. My eye dr. found that my myopia (shortsightedness) progressed in a very short time: in August I saw well with my glasses. Now the numbers jumped in one eye from 6 to 8 and in the other from 6 to 7. The cataract (a gift from my pred) is still not big enough to explain such a big change in such a short time.
For months wg is smoldering, now with eyes involved. Can it be wg related ?
I also suffer from diarrhea for months and can't eat veggies and fruits. I wonder if bad nutrition can damage the eye sight ? I will see a specialist for nutrition in few weeks so I will ask about it too.
Thank you for being here ♡♡♡

[Pete]

Are the numbers you are referring to your glasses prescription or something else? Are you being checked for glaucoma? Do you have "floaters"?

i'm guessing also that you may be approaching the age at which bifocals may be needed.

[Alysia]

Are the numbers you are referring to your glasses prescription or something else? Are you being checked for glaucoma? Do you have "floaters"?

i'm guessing also that you may be approaching the age at which bifocals may be needed.

Thanks Pete. I already have 2 glasses. One for reading and the other for all the rest. The numbers are for the glasses I wear all the time (not the one for reading). I have floaters only once a month or so, and even less. Usually after too much light.
My eye dr. Checked me well including pupils enlargement so I guess that if I had glaucoma she would know it ? She didn't know how to explain the sudden big change.

[drz]

Myopia is generally progressive with age. Cataract surgery does mostly cure it as they give you new lenses in the surgery. After surgery I can get by without glasses for most things for first time in over six decades. I still need them for reading and a mild correction does make things clearer for long distance viewing. My correction got very high like in the 11 or 12 range before cataract surgery.

[makabe]

I see an ocular inflammation specialist at the recommendation of my rheumatologist. What I thought was ever changing vision issues, he explained is the inflammation in and around my eyes exerting slight pressure that can affect my vision. I had several pair of glasses that I felt like I could never adjust to. Once he explained this and I got on the right combo of meds, I didn't need glasses at all. That wouldn't be the case with everyone as I had 20/20 vision before GPA. Maybe your smoldering disease is causing pressure more than worsening myopia or cataracts? Just a thought. I hope it gets better soon. Changing vision from day to day was a super annoying symptom for me!


Sent from my iPhone using Tapatalk

[Gab122]

hi Alysia!
I think I recall that you may have increased pred lately? If so that could affect the fluid in your eyes and in turn affect your eyesite. Did you increase pred lately?
I hope and pray it returns to normal vision soon!

Gab

[Jaha]

Alysia,
I had to have cataract surgery about two years after being on steriods. I was having trouble even seeing the Tv. I just want to warn you that just having any eye surgeon do it is not good. The doc that did mine messed it up, because I should have waited until I was on a lower dose of steriods. I went to a specialist after that and found out that the lens had never sealed correctly, because the tissue around the lens was to mushey from the steriods. I will have to have it redone in the future. I do think that it is the Wegs and the steriods that is causing a lot of bad vision problems, my vision keeps getting worse. I wish you all the best to getting better vision.

[Middlesista]

Hi Alysia - my vision issues are r/t GPA affect g my optic nerve. MRI made the diagnosis along with blood tests. Residual damage still affects vision. Saw a neuro-optholmologist. The prednisone affected my eye pressure also

sorry about your bowel issues - have they ruled out GI causes like irritable bowel? I know some folks are prescribed Imodium once other causes are ruled out.

[mishb]

I'm with you Alysia :crying:
Up until last year I have never had glasses.
Within the last 10 months I have had 3 pairs of reading glasses, and even now, I feel that I need a stronger pair.
Maybe people are just making text smaller and blurrier, for our benefit.

Since I can't eat any fruit or many vegetables, or take vitamins, then maybe it is because we aren't getting enough

[Alysia]

I see an ocular inflammation specialist at the recommendation of my rheumatologist. What I thought was ever changing vision issues, he explained is the inflammation in and around my eyes exerting slight pressure that can affect my vision. I had several pair of glasses that I felt like I could never adjust to. Once he explained this and I got on the right combo of meds, I didn't need glasses at all. That wouldn't be the case with everyone as I had 20/20 vision before GPA. Maybe your smoldering disease is causing pressure more than worsening myopia or cataracts? Just a thought. I hope it gets better soon. Changing vision from day to day was a super annoying symptom for me!


Sent from my iPhone using Tapatalk

Thank you Karen. This is the most accurate description for me. The vision is changing from hour to hour, from day to day. At some hours I am less aware that I dont see well with my glasses. At other hours I feel almost blind. And some variations between. I am careful not to drive when I feel that I dont see well enough.
Buying new glasses is extremly expensive because I buy lens which are very thin, not to put too much weight on my poor nose. So not sure yet what to do.
The eye dr. Checked the eye pressure and it was ok. Actually she didnt find anything "sick". But she said that it is weired that my vision changed so fast.

[Alysia]

Thanks for the info about cataract, drz and Jana. Mine is still young for a surgery. The dr. Said that it doesnt explain the big change in my vision.

Gab, I did take more pred lately, couple of times in the last months. How is the pred affecting your vision ? I doubt its the pred. It didn't affect my vision at the wg onset when I was on 60mg for 5 months. And the vision is not better when I am back to 5mg.

Sister, I will see a neurologist in 2 months so I will ask for brain CT or MRI. Will it be the right test ?
As for my GI system, I have wg involvement in my colon. For years. But now it looks like something else is going on. No IBS but IBD, according to calprotectin test. Thank you.

[Alysia]

I'm with you Alysia :crying:
Up until last year I have never had glasses.
Within the last 10 months I have had 3 pairs of reading glasses, and even now, I feel that I need a stronger pair.
Maybe people are just making text smaller and blurrier, for our benefit.

Since I can't eat any fruit or many vegetables, or take vitamins, then maybe it is because we aren't getting enough

Maybe there IS something which is related to nutrition. Your vision is also changing too fast and you dont eat many veggies and fruits. We need to find out what it is. Do you eat carrot ? Maybe it is lack of beta carotene ?

[Alysia]

Just wanted to thank you all for being here. I love you. God bless you all ♡♡♡♡

[mishb]

Maybe there IS something which is related to nutrition. Your vision is also changing too fast and you dont eat many veggies and fruits. We need to find out what it is. Do you eat carrot ? Maybe it is lack of beta carotene ?

Yes I eat carrots, raw and cooked.

I used to eat green apples but stopped when I read that they can affect MTX. Apples were the only fruit that doesn't affect me, in one way or another.

I have had many tests done by the optometrist and the ophthalmologist and they can't find any reason for my deteriorating eyesight, except for age :crying:

[im so blessed]

Hi Alysia, just had to chime in here and share my experience. Ive been doing pred on and off for 15 years,but only 3 years ago noticed my sight was getting bad when i was tapering the pred. Never wore glasses before. So i went to the eye dr and he said that the taper in the pred was likely the cause. He explained it to me to make sense, but i dont remember-im sorry! Anyways it was not just that one time, since then i have gotten a new stronger lens when tapering pred. So i defenitly no pred taper was the cause. Dont know if thats helpful or not, but for whatever its worth.

[Alysia]

Hi Alysia, just had to chime in here and share my experience. Ive been doing pred on and off for 15 years,but only 3 years ago noticed my sight was getting bad when i was tapering the pred. Never wore glasses before. So i went to the eye dr and he said that the taper in the pred was likely the cause. He explained it to me to make sense, but i dont remember-im sorry! Anyways it was not just that one time, since then i have gotten a new stronger lens when tapering pred. So i defenitly no pred taper was the cause. Dont know if thats helpful or not, but for whatever its worth.

Thank you for the info. Was your vision back to where it was when the pred taper was done ?

[Alysia]

Yes I eat carrots, raw and cooked.

I used to eat green apples but stopped when I read that they can affect MTX. Apples were the only fruit that doesn't affect me, in one way or another.

I have had many tests done by the optometrist and the ophthalmologist and they can't find any reason for my deteriorating eyesight, except for age :crying:

Maybe we are around something.... apples were the only fruit I was able to eat for years (without bad results) but I can't eat it anymore for months now. Each time I tried I got bad stomach pains and diarrhea. I will try to check if there is anything in it related to vision.
If it was age related, others would have it as well.

[Alysia]

I found this one
Nutrition for Your Eyes - AllAboutVision.com (http://www.allaboutvision.com/teens/nutrition.htm)

[mishb]

I found this one
Nutrition for Your Eyes - AllAboutVision.com (http://www.allaboutvision.com/teens/nutrition.htm)

Oh my goodness, it's a wonder my eyes are seeing at all, with that food list. I basically can't have any of those things.

Carrots yes and I love dark chocolate, so I should just increase the dark chocolate :thumbsup:


So, now what do we do?? :crying:

[Alysia]

Oh my goodness, it's a wonder my eyes are seeing at all, with that food list. I basically can't have any of those things.

Carrots yes and I love dark chocolate, so I should just increase the dark chocolate :thumbsup:


So, now what do we do?? :crying:

I couldn't have say it better then what you just said, Michelle. And I don't even eat carrots. And can't take multi vitamins.

No idea what next. Anyone around ??

On the 17 this month I should see a specialist for nutrition in the gastro unit. So will see what she will say about it.

[Middlesista]

Thanks for the info about cataract, drz and Jana. Mine is still young for a surgery. The dr. Said that it doesnt explain the big change in my vision.

Gab, I did take more pred lately, couple of times in the last months. How is the pred affecting your vision ? I doubt its the pred. It didn't affect my vision at the wg onset when I was on 60mg for 5 months. And the vision is not better when I am back to 5mg.

Sister, I will see a neurologist in 2 months so I will ask for brain CT or MRI. Will it be the right test ?
As for my GI system, I have wg involvement in my colon. For years. But now it looks like something else is going on. No IBS but IBD, according to calprotectin test. Thank you.


It it was an MRI that was able to isolate the optic nerve.

Hope you get answers from your docs Alyssa.

[im so blessed]

Unfortunately, no. In reply to did i get my vision back to normal.

[Alysia]

I saw the nutrition specialist today. Totally amazing dr. She said that only lack of Vitamin A can hurt the vision and that first it hurts the night vision. I dont have lack in vitamin A. I get it from eating eggs.
She gave me a formula of medical nutrition for IBD containing all the vitamins which I dont get from my poor nutrition. Will see how it works. This one: https://www.nestlehealthscience.com/brands/modulen
Still, I dont see well. Some hours are worse then others. Next dr. Will be a neurologist..

[mishb]

That seems like a supplement powder of some sort. I am a bit wary of those, but it's probably me being silly. I have never actually tried any.
Check that the ingredients don't interfere with anything else that you are taking, and my fingers will be crossed for you, that it works wonders and you can finally get some well deserved relief.

As for the eyesight, I was so hoping that they found an answer for you

[me2]

Only lack of vitamin A can affect vision doesn't sound right to me. It might be common but it is NOT the only thing that can affect vision. I had serious vision problems for quite some time that were determined to be cerebellum involvement. There was nothing to do but continue to treat the wg. In about a year my vision returned to normal. I'm not saying this is your situation but merely pointing out that vitamin A isn't the only cause (sounds like a quack statement to me) especially for a wg patient on lots of meds. There are lots of things that can go wrong with vision. I spent a lot of time with eye doctors before getting better. I hope yours improves the way mine did.

[Alysia]

Only lack of vitamin A can affect vision doesn't sound right to me. It might be common but it is NOT the only thing that can affect vision. I had serious vision problems for quite some time that were determined to be cerebellum involvement. There was nothing to do but continue to treat the wg. In about a year my vision returned to normal. I'm not saying this is your situation but merely pointing out that vitamin A isn't the only cause (sounds like a quack statement to me) especially for a wg patient on lots of meds. There are lots of things that can go wrong with vision. I spent a lot of time with eye doctors before getting better. I hope yours improves the way mine did.

Thanks for the info. The dr. Was referring only to the issue of lack of nutrition. Not other causes to vision problems.
I still have a weired vision. Some hours it is worse. Some hours better. I will have to buy new lens to my glasses anyway. But it is beyond that. No idea what number I will need as it seems to be changing over the day...

[me2]

It looks like you are seeing a neurologist next. I hope you have an eye doctor high on your list to see too. In my case it was actually the work of the eye doc that helped diagnose the problem in my brain. They found the anomoly in a test that uses prisms. They had never seen someone with my condition.
My eyes were actually in perfect working order it was the brain that was causing my visual problems. I hope you get yours sorted out soon. I know how disturbing it is to have changing vision problems.

[Alysia]

Yes. I will see a neurologist but only on March. Its a long waiting list. Thank you !

[BookNut]

Yes. I will see a neurologist but only on March. Its a long waiting list. Thank you !

I hope the eye dr is a good one and can easily fix the problem. [emoji177]


Sent from my iPhone using Tapatalk