How do you know when it's bad enough?

[jeni21]

Hi, I don't hardly ever post anything, but I'm here a lot reading.

On Monday, I am starting 5 days of IV steroids. I have been on prednisone lots of times, but never infusions.

How do you guys know when you are doing bad enough for the infusions? Is it when oral steroids don't bring you out of the flare?

I have been in this flare for about 3 weeks. I just finished 10 days of prednisone and I don't feel any better!! Usually, one round of prednisone makes me feel better. Not this time. So I called my doctor back and told him and he wants me to do the infusions.

For those of you who have had this before, does it make you feel better right away or does it take the whole 5 days? I feel so bad right now that I would do just about anything to feel better.

Any insight would really be appreciated.

jen

[RockysMom]

First of all the prednisone is not sufficient to control the flare. Three days of solumedrol, about 1000 mls a day via IV (which can be done at home) gets it under control darn quick. Then, for me, it took about 3 months to fully recover.

Cut to the chase, skip the prednisone, get the good stuff. How bad is your flare?

[RockysMom]

Forgot to say, my last flare included very slurred speech, almost stuttering, difficulty walking and standing. Vision disturbances, constipation including inability to even pass gas. More that I don't remember as it was three years ago. I only have ever had 3 days of IV steroids never 5. That's a lot!

[palmtree]

I agree. Everything I've learned about steroids is that you've got to get to the therapeutic dose or it's a waste.

I've done 3 courses of Solumedrol 1 gram for 5 days. They help but by the 4th day I'm bouncing off the walls.

[poppydarling]

For me the question was: am I in a big enough flare to be doing major damage? If so, get the inflammation down any way you can.

I used to feel like a million bucks by the second day of the five-day infusion. After a while, even the five day infusion didn't seem to make much of a dent. That's when I knew I had to reconsider my treatment plan.