DX ON today need advice on IV steroids

[artgirl]

My ON started last Friday when I thought my glasses where scratched or somwething was just not right and then last night I noticed while riding in the car that the tail lights were all white and not red and then they would go blank and I could not see them.

Long story short I saw my opthomalogist today and he had photos taken of my optic nerve. I have ON and he wants 250 mgs of IV steroids for 4 days. The nurse is coming tomorrow and I am supposed to do it every 6 hours!!

Any advice would be appreciated. I have had steroids before but not this high. I just pray my vision comes back. I am 50 and the choice to do the steroids was in the grey area but the doc thought it would be the best.

Oh course my neuro could not be contacted. My optho will call again tomorrow and give him the run down.

Thanks for any help!!!

[Justsayyes]

I was thinking the dose was low, when I was treated for ON with IV steroids it was 1000 mg./day for 3 days. I'm not understanding your dosage considering what many of us have been given.

Hoping they get thru to your neuro to consult with his recommendation.

Steroids will speed recovery. It is completely up to you if you want to have them or not. If you would like to wait until your neuro is contacted, that is a reasonable decision. Let us know what happens!

[Redwings]

The Optic Neuritis Treatment Trial (ONTT) set the protocol for the steroid treatment of ON: 250 mg, 4 times per day (or every 6 hours) for 3 days. That has since been replaced by 1000 mg IV prednisolone per day for 3 days. Administration every 6 hours outside of an inpatient/hospital setting just isn't practical. A combined daily dose is just as effective. If the home health nurse is coming to your house to do the IVs, there's no reason to be doing it every 6 hours. I did my first IV that way back in 1994 when the convention was to administer the IV in the hospital, but all of the literally dozens of 3-day IV treatments I've had since then were all done outpatient in a single daily dose.

The ONTT found that subjects treated with low-dose oral steroids for ON were actually more likely to have a repeat episode of ON than were subjects treated with high-dose IV steroids or those who were not treated at all. (The researchers actually issued a statement at the time warning against the use of low-dose oral steroids for ON.) So the recommendation of the ONTT was to treat with high-dose IV or to not treat at all. The final outcome was the same for both IV-treated and untreated groups.

IV steroids don't affect the final outcome of an ON episode. They only shorten the duration of the episode. So if 3 days is no more effective than no days of treatment, it's questionable why your ophthalmologist wants to add a 4th day. It's even more questionable why he added an extra day when the choice to treat was in a gray area to begin with. Unless you have an unusual case of ON, the extra day of steroids only adds to your total exposure, increasing your risk of harmful long-term side effects. The oral prednisone taper, which was part of the original ONTT protocol, has also fallen out of favor for the same reason. Research showed that there was no medical reason for a taper.

Other than the extra treatment day and the outdated administration in 4 divided doses instead of a single combined dose, your ophth is following the standard treatment for ON. If you've never been on this high a dose of steroids before, be prepared for a wallop of side effects. It's a good idea to take one of the OTC acid reducers to help prevent stomach upset. If you can't sleep and that bothers you, you can ask your doc to prescribe something for a few days to help you sleep.

If it's decided that you can get the full daily dose at once, it will probably be best to take it over no less than 2 hours. Smaller doses can go faster.

I hope you have a quick recovery.

[artgirl]

Thanks Redwings for all the great info. I will talk all this over with my MS specialists first thing and see how he feels. I was told since I was 50 years old I was in the grey area for treatment.

Anyone under 40 does well but over 50 it does not work. I also have to do my Rituxan infusion on Monday with steroids. Sorry that was my fault this is all running together when you have rheumatoid and MS I can't keep anything straight these days.

[jackiey]

artgirl,
i recv'd 3 days of 1000mg each day in 2009 for ON. my eyesight improved enough in a week and a half that i returned towork with no further worsening since. i still have partial vision in my rt eye but most times i have grown accustomed to it and do not notice. i am now on a 5 day iv steroid treatment for balance and cognitive issues. my worst issues to date. the side effects of steroids i think can be different for everyone. i am pretty lucky i guess. i have a little insomnia, indigestion ( which an OTC anti acid works) big appetite and a metal taste. not too bad if it gets me back to the living quicker.
jackie

[Cat Mom]

With my ON over the years the dose of steroids I received each time was 1,000 mg/day for 5 days but also with oral steroids following the IV to taper off such a high dose. I've had ON in both eyes (not at the same time) and the right eye's sight came back but the left didn't.

I hate, hate, hate the side effects of the steroids but on the upside, the energy level they gave me was a welcome contrast to the every day fatigue.

[Redwings]

I was told since I was 50 years old I was in the grey area for treatment. ... Anyone under 40 does well but over 50 it does not work.

Hi artgirl:
I had never heard/read of the effectiveness of steroid treatment for ON being determined by age, nor can I find a reference to it in the medical literature. Coincidentally, I had an appointment today with my neuro-ophthalmologist, who is also a specialist in inflammatory conditions of the eye. He has never heard that, either. Neither of us can even think of any underlying principle that would explain why it might be true.

I'm over 50 and steroids work just fine for my ON. That's such an odd statement that I won't believe it until I read the actual source your ophthalmologist got that "factoid" from.