Oral vs IV steroids?

[Gary]

I have been doing some reading and there seems to be a huge difference of opinion on this. Across the world as well as at home. Although Europe is much more likely to use oral than IV. Seems like oral 500mg to 2k mg for 3 to 5 days and 500 mg to 1k mg for 3 to 5 days for IVSM. I looked around and the biggest dose of oral steroids I could readily find available was 50 mg. That would be a lot of pills!

Several studies in the last few years seem to indicate that there really isn't any difference after the the first 24 hours. Cost, convenience to the patient? I guess you could get someone to compound/order some stronger pills. But most of us that are at the point that we really need them waiting another day may not be an option.


Sounds silly but one of the reasons I wait to see what is going to happen is that I hate getting the IV. I have had so many I have run out of really good veins and now it just hurts. My all time record is 8 sticks to get one going.


Comments anyone?

[Howie]

I've had the IV steroids twice, and each time was followed by an oral taper. It seems to have worked well for me, but that shows nothing really for anyone else.
That's the one truth about this thing called MS, it's different for each of us.

[Virginia]

I have had the oral as a taper after the IV and it seemed to work alright like that. I knew a MS Nurse here who use to take only oral and it was a certain kind of oral. She knew when she needed them and would call her Doctor for RX. She did really well with that.

[SuzE-Q]

I agree that it seems to be the case based on latest research that oral is just as effective. Gary, I think dosage varies depending on means of administration, so 1,000mg IV doesn't equal 1,000mg oral.

I'm wondering if oral may be better for you just because it works out to more days on them? I wonder if that may be a beneficial factor in settling down your bp? May be worth a try, especially if you are adverse to the IV. I am too, I'm the same way, I leave things longer than I should if it involves an IV because of the difficulties and pain involved in trying to access damaged veins. The IV itself raises my bp in anticipation of inserting it!

I agree with Virginia's most excellent suggestion that a teaching or research hospital may be a good idea to see if there's anything new in the pipeline to treat this.

[Gary]

I agree that it seems to be the case based on latest research that oral is just as effective. Gary, I think dosage varies depending on means of administration, so 1,000mg IV doesn't equal 1,000mg oral.

I'm wondering if oral may be better for you just because it works out to more days on them? I wonder if that may be a beneficial factor in settling down your bp? May be worth a try, especially if you are adverse to the IV. I am too, I'm the same way, I leave things longer than I should if it involves an IV because of the difficulties and pain involved in trying to access damaged veins. The IV itself raises my bp in anticipation of inserting it!

I agree with Virginia's most excellent suggestion that a teaching or research hospital may be a good idea to see if there's anything new in the pipeline to treat this.

That is a thought.....Im not sure of the logistics we are about 400 miles either way from Salt Lake City and Portland Oregon.

[Jen's Solitude]

Gary back when I was first dx I was put on oral steroids only. It was a lot of pills to take. Prednisone has its own issues especially with repeated use.

My best friend has Crohns disease and for years was treated with Prednisone. Then it came to light how much damage it could do so they discontinued that treatment with her. The damage was already done though and to this day she suffers from the oral steroids she started receiving as a teenager.

Back in June I had solu-medrol followed by a oral taper. I would not mind taking just the oral steroids as I found them just as effective. Years ago what got on my nerves was how many I had to take at a time. My dosage started with 8 pills per day and tapered off. I think it took 3-4 weeks if memory serves. And of course the taste is horrible!

The combination IV/oral taper took much less time but I still had the nasty taste of the oral pills to contend with.

If I had your problem with weak veins I think I would ask to take the oral steroids. And I would feel confident that it is an effective therapy choice for relapses.

[Howie]

What a day. I need to get out of this early to bed, early to rise routine. Last night, I went to bed at 9pm, and woke up at 4am. I've been on this schedule for a while now, and it's getting old.

I just ate my big meal for the day, and it feels like it should be 6pm. In reality, it's 20 after noon. Ugh! I've had a gallon of coffee today, and it makes me feel sleepy. Don't you just love having your wires all crossed up?

[Howie]

Sorry, I posted in the wrong thread. That's how together I am today!

[Gary]

On day 2 of the taper.....

Howie I know how you feel sometimes I feel like I mix up my days and my nights.

Jen I am not terribly adverse to the taste as much as getting the IV. I have found that if they us some Novocaine (or something) they can move it around and catch the veins. They seems to "roll" according to my kids not unusual for someone who has used up their veins with IV's in the past. And of course if you are dehydrated or if your BP is significantly elevated it can be even harder.

As usual I should have done something sooner. But I just hate being the guy who runs to the Dr with a hang nail. Or hear those dreaded words. "I can't find anything to explain why you feel so bad"!!

[Cherie]

In Canada they do 1250 mg daily for 3-5 days. They compound the oral and mix with a flavored water and it is drunk over an hour. Stats are about equal on outcomes with either oral or IV.

[Gary]

In Canada they do 1250 mg daily for 3-5 days. They compound the oral and mix with a flavored water and it is drunk over an hour. Stats are about equal on outcomes with either oral or IV.

I wonder if my doc might go for it. But like he says I gotta ask permission for everything any more. Can we get the meds? Can it be done in office? Is it a standard recognized procedure? And most important how do you bill it?


Its got to be cheaper than the infusion center. I am really having a bad day today. Seems like my body reread all the side effects of steroids and decided to see if I couldn't get all of them at once.

[Howie]

Gary, this too shall pass. Having done steroids, you now know what it's like, but there is an end to everything you've been going through, and you can resume your life. Don't focus on what's wrong in the world, but rather how you can make the world a better place.

[Cherie]

Gary,
Perhaps these links would enlighten?

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In Canada they call a script into a compounding pharmacy where it is prepared. Patient picks it up and takes it home for self dosing.

[Gary]

Thanks guys....... I really having all the Sx that are listed for steroid treatment..... and the are all happening at the same time. This is really hard to handle. I know it will be better but it is certainly taking its time about it.

[Cherie]

After the last 8 or 9 rounds of IVSM , I came to the conclusion that there were more adverse effects from the therapy with each consecutive round than help. And my cardiac status, BP, blood sugars and weight deteriorated with each dose until it was determined that this therapy was no longer an option to manage a worsening of symptoms related to MS and symptom placement. Doesn't matter if it's oral or IVG. Steroids , once they start not working, do not work better in a different dose form. ACTHAR gel injections might be something to speak with the doc about as an alternative to steroids. Some who no longer tolerate steroids do well on Acthar