steroid treatment pill or IV????

[amber23]

I am having a bit of a problem and am a little stressed over it. Can any of you please give me your opinions or experinces? In short this is what has happened so far.

In approx 2001 i got optic neuritis no treatment was given. A year later MS Neurologist put me on 60mg steroid pill form. A note was sent home with it saying the IV should be given first for best results. I was petrified of needles back then and I couldn't get hold of y family doctor to ask what i should do so i just took the pill. I got worse. (Just to note that neurologist didn't speak english very well so it was frustrating).

My family doctor finally put me in hospital and gave me IV steroid then tapered off on the steroid pill I had to go through that twice before i was discharged because it didn't work the first time. Let's note that i live in Ontario so i don't know if people in the states get different treatment. 2003 i started avonex.

In 2003 a hospital wanted to give me Chemo i said no. because there was no studies to prove it would help MS and because of the side effects and chance of developing a cancer from taking it and what if i really needed the chemo for cancer later i have read that then the chemo won't help the cancer at all then.

So now it is 2012 about 4 months ago i got a cold and i haven't had one in years. I got a flare up with it of my other eye going blind. It is fine now after 2 months. I have a neurologist that doesn't believe in giving the IV steroid. Just the pill form in high dose like 1000 mg. OMG i definitely don't want that high of a dose! I asked well what do i do if i get a bad flare up, doc said chemo or go on a study. Doc said it doesn't look like avonex is working but he has said that ever since i started seeing him 4 years ago.

I had a different neurologist before this one and she always said i was holding steady on avonex and i hadn't changed since seeing her to him. I don't know why he seems to be against avonex and wants to do studies and chemo so bad. Any ideas? Now i am being sent for a mri and i haven't had one for about 4 years.

[als5445]

I live in the US, but I'll give you my personal experience.

MS Neurologist put me on 60mg steroid pill form. I was petrified of needles back then and I couldn't get hold of my family doctor to ask what i should do so i just took the pill. I got worse.

Just the pill form in high dose like 1000 mg. OMG i definitely don't want that high of a dose!

I've had many flare ups over the years and personally i've only seen improvement with the IV steroid (solu-medrol) or high dose prednisone. My last several flares i've done high dose prednisone because of the convenience (I was in college at the time). My neuro RXd 500mg a day for 3 days as she had research studies indicating that this dose was safe and effective for MS flares. I would not take this dose as a long term treatment because of the risk of side effects.

I have a neurologist that doesn't believe in giving the IV steroid. I asked well what do i do if i get a bad flare up, doc said chemo or go on a study. Doc said it doesn't look like avonex is working but he has said that ever since i started seeing him 4 years ago.

This just seems ridiculous. Chemo for a flare? I'm not sure how progressive your MS is, but in the US chemo is only given if a patient is very progressive or if all other treatment options fail. Have they even discussed with you any other treatments? The other CRAB drugs are all sub-q and they do have auto-injectors so you don't have to see the needle. If he isn't open with treatment I would find another nuero.

[amber23]

thanks als5445. I am taking Avonex since 2003. The Betaseron made me rapidly decline. 500mg makes more sense to me than the 1000mg. Gosh 1000 is crazy i think that would be very bad! With the 500mg did you bloat up? Do you take water pills while on the prednisone?

The only other thing the doc suggested besides chemo was to go in one of the studies. I told him no to the chemo and i'm not much into trying a study right now.

I have progessed a little but i think it is mostly due to stress.and it always seems to be around the time i have an appointment with the doc. I only see the doc once a year so it is kinda weird that he keeps telling me he doesn't think the avonex is working , but he has told me that since the first time i have seen him.

I don't know why the two ms hospitals around here want people to do the chemo all the time. And i don't understand why they are so into getting patients to do the studies it is like they get brownie points for every person that they enter into one.

**This post broken into paragraphs. Blocks of text is hard for some to read**

[MrsChip]

I've had steroids many times over the years.
Only had tablets once 5 days of 500mg and I felt wretched - didn't seem to work either.
Every time I've had IV for 3 days - sometimes 500mg sometimes 1000g per day, it's always been effective for me.
I can put on 10lb in the 3 days but it's just water so it drops off in the following month, and I don't sleep very much on treatment. But apart from that, IV at high doses for short periods seem to do the trick for me. Never had a taper after but had no problems despite that.
Don't stress about the high dose, the length of time you're on steroids is more important. High short IV blasts = Good for me. Longer lower doses = side effects and wretchedness for me.
We all react differently tho.

[als5445]

I only experienced bloating when tapering, not the three day steroids. My mind was pretty foggy and I had bad heartburn with the high dose, but that was gone after I stopped taking them.
You definitely do not sound like you should be taking chemo. I'm glad that you have been advocating for yourself and not just doing what that crazy dr has been telling you. As for first line treatments, there is still copaxone if you do decide to switch from avonex. It isn't an interferon like the other CRABs.

[donnainct]

IV steriods defintly for me, i coulndt stand the side effects the oral steroids gave me!

[amber23]

Thanks so much everyone for replying good to hear that I'm not in this steroid use alone.