Optic Neuritis

[dmacdougall]

My sister has been diagnosed with MS for a couple years and has recently had a white out in her vision, diagnosed as optic neuritis. She can not see a computer screen and has asked me to poll people on this site to see if anybody has had IV prednisone for treatment. Currently she is saying no to treatment.
Thoughts?

[MSer102]

About 20 years ago there was a large "definitive" trial involving optic neuritis and MS called the Optic Neuritis Treatment Trial (ONTT). The trial found that treatment with steroids has no effect on the ultimate outcome of an episode of optic neuritis. That's right: The outcome is the same whether treated or not. It was found that steroids can speed up how fast the effects of the attack last. There is frequently at least a little residual deficit in vision even if the attack is treated.

The other thing about optic neuritis is that the steroids generally only help when started within the first 2 weeks of the start of the attack. After that the damage is done and the steroids usually don't help much if at all. My neuro-ophthalmologist won't prescribe steroids after 2 weeks. And it's kind of hard to justify wanting to have steroids to shorten the length of the relapse when the person has already let 2 or 3 or sometimes more weeks go by already.

I have had several episodes of ON and I always want it to clear up as fast as possible so I always get the 3 days of high dose steroids even though the side effects are unpleasant.

I think this is a good place to add that the ONTT set the protocol for treatment of optic neuritis at 3 days of steroids. Somehow neurologists have decided to increase that to 5 days for no apparently good reason and even my neuro-ophthalmologist can't figure out where that came from or why they do it. If 3 days of treatment has the same end effect as no treatment it isn't clear why neurologists decided that 5 days is any better.

MS attacks rarely "have to" be treated. So if your sister doesn't want to have steroid treatment (and put up with all of the side effects ) then there is medical justification for not doing it. The ONTT says that her ultimate visual recovery will be the same even if she doesn't have steroids. It's her choice.

[dmacdougall]

Thank you so much for the response. I will read this to her. greatly appreciated

[MandyLynn003]

speaking from experience I've had three episodes of ON. All with the 5 day course of solu-medrol steroid treatment

My first attack went for about two weeks before I started steroids and it cleared within 3 months.

My second was a week before steroids and it cleared 3 months after that.

My third I wasn't able to be seen for treatment for over a month and it's been 6 months and my eye is still very blurry.


Like MSer102 said steroids have Side effects, and you do not have to take them. Since it was over a month for my last episode I guess it was unnecessary for me to have the steroid treatment, but I now know this thanks to the MSWorld

[Cat Mom]

Lots of episodes of ON, went on steroids each time. They were successful with the right eye but due to repeated ON-related inflammation (back to back, very close together) in the left, sight never returned. Left optic nerve damage is permanent.

I was on Rebif at the time, which did not work for me. Since switching to COpaxone 6 years ago, I've had it twice, the last ON in 2009.

Regarding steroids, it's a crap shoot. The side effects are horrendous and last for quite a while after. It's a personal choice... just for the record, if/when it hits the right eye, I won't hesitate to get on steroids. Maybe because I'm down to sight in only 1 eye, but I've had more success with them than not. Too scared NOT to.

Please let us know how your sister is doing, bless your heart for reaching out on her behalf.

Jen

[Swammack]

Three times with ON two with steroids

I have had ON three times. The first time I wasn't diagnosed with MS and it took almost three months to find out what I had so no steroids and it cleared up. The next time I got it we caught it fast and I did a nine day treatment, it was cleared up by the middle of the treatment. With the last I got on a four day treatment within five days and it cleared up within a few weeks. The side effects are horrid! I would do it every time though. Some dr spread out the amount you get over longer periods because it makes you less sick. The amount you actually get is usually the same. You have to do what is right for you though.

[foolintherain]

I just wanted to jump in to say that everyone is different, and not everyone experiences side effects from the steroids. I had a 5 day course and had no side effects. So there is hope!