Recurrent Optic Neuritis

[eugefst]

Hello everyone! I am 20 years old and was diagnosed with CRION (chronic recurrent inflammatory optic neuropathy). I am currently on long-term steroid use(prednisone), and started taking immunosuppressants(Cellcept) 4 months ago, in order to reduce the use of steroids. Nevertheless, I still experience episodes of ON.
I am making this thread because I have the feeling that some things trigger ON. From my experience, I have noticed that:
stress
flights
lack of sleep, and
spring (?!)
trigger ON! Has anyone else had a similar experience? I have become really frustrated with this whole situation, as I have been taking so many pills this past year, and yet the symptoms remain. Hence, I want to know if there is something that may trigger ON, so that I can avoid it. Have you noticed any other environmental factors that may trigger ON?

[jreagan70]

Hi eugefst:

I also have recurrent optic neuritis. There are a couple of very important things I've learned from my ophthalmologist.

1) It's important to know the difference between a real episode of ON and the symptoms of a pseudoexacerbation so you don't treat something with steroids that, by its very nature, doesn't respond to steroids.

If you've had more that one or maybe two episodes in the 4 months you've been on Cellcept, chances are good that at least one of them might be a pseudoexacerbation. Pseudoexacerbations are known to come from what you've noted as triggers: stress and lack of sleep that raise body temperature and excitatory chemicals. Illness also does the same, which is why increases of symptoms in demyelinating diseases aren't automatically thought of as relapses.

Every time I have another episode of ON, my ophthalmologist makes me do two different kinds of visual field tests just to establish that the field losses are real and from a new episode rather than just old field defects showing up in a pseudoexacerbation.

This is not to say that there aren't identifiable triggers in ON, but that what appears to be a trigger for a real event might in fact be triggering a pseudo event. One of the confounding things about inflammatory demyelinating diseases is that there aren't any recognized triggers, and that events occur whenever they want to.

If triggers were known, then theoretically the events could be prevented. That's what you're trying to do on your own, which might be hard when even medical researchers haven't been able to figure it out. So we're back to trying to discern events that trigger pseudoexacerbations -- which are known because they're repeatable -- from events that trigger real episodes -- which for the most part aren't known.

High-dose steroids and strong immunosuppressants like Cellcept should be giving you more time between episodes. If they're not, it's unusual enough that a closer look into whether some of the episodes are pseudo is warranted.

The second thing I learned is that many researchers now consider CRION to in fact be one of the neuromyelitis optica (NMO) spectrum disorders. As such, or even as a standalone condition, it isn't MS. And since it isn't MS, asking about CRION on an MS forum is likely to get you wrong information.

ON in CRION or NMO doesn't necessarily act the same way as ON in MS. The treatments are different and the effects on the optic nerve are different.

You're asking good questions. You're just asking them in the wrong forum. You might do better to go to the website of the Guthy-Jackson Charitable Foundation for NMO and ask about your ON/CRION in their member forum. http://www.guthyjacksonfoundation.org/

One of the questions you might ask there is about what medications the members with NMO spectrum disorders are taking. If Cellcept isn't effective for you, your doctors might consider Rituxan, which is now commonly used for NMO. You aren't going to get full or correct information about the use of medicines for NMO on an MS forum.

Good luck in your search for answers.

[DPL2014]

At neurologist now and....

His nurse just told me that many people have flare ups of ON that are brought about by infection. I didn't know about that and I research MS like a mad woman. She said anything that kicks your immune system into overdrive will kick your flares into action too.