Methotrexate caused optic neuropathy!

Hey everyone (and sorry my bad English)!:sign0144:

I want to tell you my story about what can happen if your body doesn’t get the folic acid it need, especially when taking Methotrexate.

I started to take Methotrexate 3.5 years ago for my Crohn. I was also taking 5mg of folic acid/week because Methotrexate is a folic acid antagonist. At first everything went well and it seemed to help my joint pain. After few months I noticed that my eyes are sore for light. It was hard to focus my vision on anything specific and I started to have headaches. Couple of months later my vision was so bad I couldn’t read normal size text or see details. I couldn’t recognize people’s faces further than 2 meters.
I called my gasro about my vision and he sends me to an eye specialist. I waited one month and after the eye doctor tested my vision and noticed that there is something wrong with my optic nerve he send me to eye and nerve specialist. After 2 weeks I called the hospital that I can’t wait any longer. I said that I’m afraid of going blind. The doctor believed me and set me appointment for the next day.

I went to see the eye doctor and after looking my eyes and testing my vision she was very concerned about my situation. She said that my optic nerve is damaged, there are blind spots in the center of my vision field, and she doesn’t know why. In next month they tested everything possible, even brain MRI. And she still didn’t know what was destroying my optic nerve. I was terrified and searching the net like crazy. After desperately asking for help on another forum my friend there promised to help by searching the pub med database for doctor that she had access to. Then she fined an article about Methotrexate-induced optic neuropathy. I think I read it for ten times and cried, this was the reason for my lost of vision. I printed it and took it to my doctor and she was amazed, they took a blood test and there was no folate in my body what so ever. Even though I was taking folic acid, the Methotrexate and folate deficiency caused a toxic optic neuropathy.

Since then I have been taking folic acid every day and my vision is improving slowly. Now I can read normal size text and drive, although I can’t read all the sings. I can see details a little pit, but there is still long way to go for the vision I had before. The doctor said that the optic nerve will recover but it can take years to be even close to normal. I can’t remember anymore what it is to see as well as I was seeing, but I’m happy that I’m not blind.

:welcome: Trixy. I have been on Methotrexate twice the first time I was not told to take folic acid and the second time I did. Some find that there vision is affected just from crohn's itself. I can understand you were scare, being blind would be devestating to say the least.

I have to say your English is pretty good . How long have you had Crohns and what other meds do you take for it?

Our community has a Finlander not far from here, we are on a port and near water so they migrated here many years ago. Nice people!

Glad you found us and thanks for letting us know about the Folic acid for others to see.

Welcome Trixy ,

Sorry to hear about your horrible experience, how scary. I'm glad it was caught before you went blind! I'm suppose to start taking Methotrexate soon and will make sure I always take my folic acid. I hope all goes well with getting your vision back.

Thanks for warm welcomes.:rosette2:

I have had Crohn’s for 18 years and tried all the meds available in Finland (we don‘t have all the biologic meds yet approved in EU for Crohn‘s). I’m currently on Humira since august this year, so far so good except for the atopic eczema that it’s worsened.
So I would say that I have a lot of experience of this disease and its treatment.

Pen: I’m aware that Crohn’s and some of the meds, like prednisone, can affect vision. But in my case those was excluded.

And we Finnish people are very nice.:biggrin:

Lseibert: I recommend that you ask your doctor to monitor your blood folate levels also. I was taking folic acid but it didn’t help, maybe I had bad folate deficiency already or it didn’t absorb because of Crohn’s in ileum.

I hope that Methotrexate work for you.:thumright:

wow! I'm so sorry that happened! I'm glad you're slowly getting better. This story will always remind me that I need to take my folic acid everyday. Thanks for sharing.

I developed extreme dry eye as a result of all the meds. I made sure to check with an eye doctor and an opthamologist to make sure it was just dry eye too , so many scary eye problems can develep because of crohn's. I really wish crohn's/crohn's meds didn't cause all these extra issues... Like we don't have enough to deal with!