Vision/Optic Nerve Question

[Middlesista]

Titrated Prednisome to 10mg - had been having on and off blurry vision prior to this and had seen neuro-opthomologist and she did some testing and was not overly worried and told to keep titrating. I am also on MTX. I initially presented with almost total vision loss in that eye back in Nov when diagnosed and was treated with high dose steroids and Rituxin.

Anyway at 10mg started to lose a bit more vision - fading colors- and was told to go back up to 15mg of Prednisone and to titrate by 1mg. Inflammatory markers are norm. Vision conts to fluctuate as it did before - sometimes vision is great other times blurry and it changes throughout the day.

When I looked at my optic nerve testing there are multiple tests and some of the tests report abnormal thinning of the optic nerve, sometimes no thinning and can not always correlate thinning with when I was having sx. In fact,mentions thinning in my good eye where I have no real vision problems? I have been doing a bit of reading and it seems that with optic nerve issues folks seem to have problems when they are off steroids. I am wondering if this could be a chronic problem or if the blurring is caused by something else since they feel GPA is not active right now from the testing they have done I guess I can live with the blurries if I can get off the prednisone but do not want to lose my vision.

Wondering if anyone has experience with this?

Thanks for any ideas folks can offer.

[drz]

Wegs can cause vision problems and they can be serious so is important to get a good assessment very quickly any time any new vision problems show up. At my first follow up appointment after leaving the hospital I was told "Wegs got your hearing, so we want to save your vision. Go find a good eye doctor that will see you ASAP if you develop any vision problems.

Prednisone can cause vision problems. Dry eyes are common cause of blurry vision and it usually shows up with excess tearing as eyes try to stay moist. Good artificial tears like Refresh can help with this problem. Cataracts can often develop too from high doses of Pred but are easily corrected with surgery. If you are seeing a good eye doctors on regular basis and stay with the treatment recommendations of staff familiar with treating Wegs, that is best thing you can do. Most vision loss and many other serious problems usually happen during the initial attack of Wegs before effective treatment can be given. After diagnosis this is much less likely happen unless you get a real big flare that can't be controlled which again would be rather rare event. Treatment may not prevent or relieve all your symptoms but will generally minimize or limit most serious body damage.

So stay in touch in with your treatment team and let them worry for you. Just be vigilant about reporting anything that might be new and of possible concern. Years ago I express a fear of going blind some day to my ophthalmologist since diabetes is one of the leading causes of blindness and about 80 percent of people who have had diabetes for at least 15 years have some damage to the retina. I passed that mark a decade or two ago. Her reply to me in her Siamese accent was "you keep your appointments and follow my directions and you no go blind." No one can guarantee anything but her reassurance was helpful to me. I do get an evaluation quickly any time any new eye symptoms appear and I still have adequate vision although some blurring often is present.

[vdub]

sometimes vision is great other times blurry and it changes throughout the day
I have this same condition and attribute to pred. But, like drz said, keep on top of things, because wegs can affect the eyes in a very serious way.

[Alysia]

Dear sister. I dont know about the vision nerve. But I do know that wg can cause granulomas in the orbit of the eye. The eye will be protruding in this case and it will show up on CT.
I think that your wg is still active, which is a possible thing. It took me 2 rounds of rtx and about 9 months to go into remission in 2013-2014. Will you get another rtx this month ? It is about 6 months since you get it. In my experience after about 5 months the wg symptoms start to come back, "asking" for another round of rtx.
Please update us. Sending prayers & love ♡

[Middlesista]

Wegs can cause vision problems and they can be serious so is important to get a good assessment very quickly any time any new vision problems show up. At my first follow up appointment after leaving the hospital I was told "Wegs got your hearing, so we want to save your vision. Go find a good eye doctor that will see you ASAP if you develop any vision problems.

Prednisone can cause vision problems. Dry eyes are common cause of blurry vision and it usually shows up with excess tearing as eyes try to stay moist. Good artificial tears like Refresh can help with this problem. Cataracts can often develop too from high doses of Pred but are easily corrected with surgery. If you are seeing a good eye doctors on regular basis and stay with the treatment recommendations of staff familiar with treating Wegs, that is best thing you can do. Most vision loss and many other serious problems usually happen during the initial attack of Wegs before effective treatment can be given. After diagnosis this is much less likely happen unless you get a real big flare that can't be controlled which again would be rather rare event. Treatment may not prevent or relieve all your symptoms but will generally minimize or limit most serious body damage.

So stay in touch in with your treatment team and let them worry for you. Just be vigilant about reporting anything that might be new and of possible concern. Years ago I express a fear of going blind some day to my ophthalmologist since diabetes is one of the leading causes of blindness and about 80 percent of people who have had diabetes for at least 15 years have some damage to the retina. I passed that mark a decade or two ago. Her reply to me in her Siamese accent was "you keep your appointments and follow my directions and you no go blind." No one can guarantee anything but her reassurance was helpful to me. I do get an evaluation quickly any time any new eye symptoms appear and I still have adequate vision although some blurring often is present.

There are so many variables it seems - I think my neuro - opthomologist gets a bit tired from hearing from me so often but my RA is staying on top of these issues and keeps telling me to contact her. If this does not work I may get another opinion at Mass Eye and Ear in Boston

Thank you for taking the time to answer drz - truly kind of you and know I appreciate your help with this.

[Middlesista]

I have this same condition and attribute to pred. But, like drz said, keep on top of things, because wegs can affect the eyes in a very serious way.

So you think your vision problems are caused by the prednisone? Have you had optic nerve studies Vdub?

Thank you for your reply. Vdub

[Middlesista]

Dear sister. I dont know about the vision nerve. But I do know that wg can cause granulomas in the orbit of the eye. The eye will be protruding in this case and it will show up on CT.
I think that your wg is still active, which is a possible thing. It took me 2 rounds of rtx and about 9 months to go into remission in 2013-2014. Will you get another rtx this month ? It is about 6 months since you get it. In my experience after about 5 months the wg symptoms start to come back, "asking" for another round of rtx.
Please update us. Sending prayers & love ♡

Alysia - I have read about how the Granulomas can affect the orbit of the eye and in my case, from what I understand it is more of an inflammation of the optic nerve and not an actual mass of Granulomas at least at this point. I had an MRI not too long ago as well as the optic nerve studies.

I am on MTX and at the last check my B cells were pretty much still nil. My RA does not want to use RTX unless things do not improve. Feel ok otherwise Alysia and sometimes my vision is ok so I am just confused trying to figure out why the vision waxes and wanes through out the day

Thank you for caring

[annekat]

Middlesista, I know a woman with Giant Cell Arteritis, another form of vasculitis, who has gone permanently blind in one eye, I assume, perhaps incorrectly, because of inflammation of the optic nerve. Or maybe it's because of lack of blood supply from the inflamed artery that supplies it. I'm not sure whether this could have any bearing on your situation, but do know that some of us get more than one form of vasculitis or autoimmune disease..... so just wondered if your RA would consider this a possibility. I agree with the others, see an eye doctor who has some experience in vasculitis.... in your neck of the woods, I'd think there'd be a few.

[Middlesista]

Middlesista, I know a woman with Giant Cell Arteritis, another form of vasculitis, who has gone permanently blind in one eye, I assume, perhaps incorrectly, because of inflammation of the optic nerve. Or maybe it's because of lack of blood supply from the inflamed artery that supplies it. I'm not sure whether this could have any bearing on your situation, but do know that some of us get more than one form of vasculitis or autoimmune disease..... so just wondered if your RA would consider this a possibility. I agree with the others, see an eye doctor who has some experience in vasculitis.... in your neck of the woods, I'd think there'd be a few.

Hi Anne - the neuro-opthomologist I see is the one that is responsible for my GPA being diagnosed-thank goodness for that. If things do not improve however I plan to see someone at Mass Eye and Ear in Boston. I already lost my hearing in my right ear in 2013 before I was diagnosed in 2015 and so don't want to lose the vision in my left eye but at least we know (as much as possible) what we are dealing with whereas with my ear they thought it was viral - and I even got a second opinion at Mass Eye and Ear for the hearing lose and the specialist never put two and two together and I mentioned all my elevated inflammatory markers at the time.

Thank you for taking the time to reply I appreciate the information that you provided and the helping hand you always extend to us "newbies"

[annekat]

Hi Anne - the neuro-opthomologist I see is the one that is responsible for my GPA being diagnosed-thank goodness for that. If things do not improve however I plan to see someone at Mass Eye and Ear in Boston. I already lost my hearing in my right ear in 2013 before I was diagnosed in 2015 and so don't want to lose the vision in my left eye but at least we know (as much as possible) what we are dealing with whereas with my ear they thought it was viral - and I even got a second opinion at Mass Eye and Ear for the hearing lose and the specialist never put two and two together and I mentioned all my elevated inflammatory markers at the time.

Thank you for taking the time to reply I appreciate the information that you provided and the helping hand you always extend to us "newbies" Shoot, this borrowed computer just lost my reply and I didn't see an option to auto-restore the content. Was just saying that following your intuition and seeking another opinion sounds good, if it comes to that. Even though your current specialist most certainly knows about the condition I mentioned. My well respected ENT overlooked Wegs as a possibility for a couple of years after Iost a lot of my hearing due to ear infections which weren't typical for me. So, yes, it happens, even among the best docs. Your current guy sounds really sharp to have figured it out.

[Middlesista]

Shoot, this borrowed computer just lost my reply and I didn't see an option to auto-restore the content. Was just saying that following your intuition and seeking another opinion sounds good, if it comes to that. Even though your current specialist most certainly knows about the condition I mentioned. My well respected ENT overlooked Wegs as a possibility for a couple of years after Iost a lot of my hearing due to ear infections which weren't typical for me. So, yes, it happens, even among the best docs. Your current guy sounds really sharp to have figured it out.

So sorry you lost some hearing - the same happened to me when I first presented back in 2013. They did not consider GPA since I had no other symptoms and I even got a second opinion at Mass Eye and Ear in Boston!

You are so correct Anne - as good as our docs seem to be we still have to always keep an open mind and know when it is time for another opinion as much as it can be awkward.