IV Steroids

[karj]

Hi all

I'm in the middle of a flare and after having a sigmoid colonoscopy I am being admitted tomorrow for IV steroids and humira. I was on remicade and it worked so well but then after 9th or 10th infusion I reacted after 3 mins and they had to stop. Turns out I have built up anti bodies against the drug

My question is if they put me on IV steroids, will I have to go back on oral steroids afterwards. The last time I was put on prednisolone I nearly died, I mean I would never go through that again, and also it did not work. I wasn't sleeping, anxious all the time, couldn't walk a small distance without feeling out of breathe, bad migraines. It was the most horrible feeling of my life, and on top of all that it didn't stop the bleeding from crohn's which is the very reason I was put on it!! Thank god remicade worked for me but unfortunately before xmas it just stopped. So now we are trying humira but he also wants to put me on iv steroids because of how inflamed I am but I am afraid I will have to go on oral one's if he does

 

[Josephine]

Yes they will property put back oral medication again. Sorry if it wrong

 

[SarahBear]

Hi, karj!

Did you have any other side effects of Prednisolone that make you say you nearly died? The ones listed are not abnormal or dangerous. How long did you take it?

Are you being given a course of Pred, or are you being given one dose with your Humira? Either way, the IV steroids would not necessarily mean you will have to take oral steroids later. It depends on your doctor's plan - you just need to ask. However, the IV steroids are essentially the same as oral steroids so taking either one is pretty much the same thing.

 

[karj]

Sorry for ambiguity, I mean nearly died as in I felt so bad. Had no life threatening side effects but I literally was not able to go outside the house for the duration I was on them, I think it was about 6 to 8 weeks. And plus they didn't work. They loaded me with the IV steroids first inside in hospital and put me on the oral after. I will take the IV on condition that I won't have to take the pred afterwards. My consultant always tries to force steroids on me. He doesn't seem to realise the effect they have on me. I had blurred vision twice a day for half hour at a time also, along with breathlessness, anxiety, heart racing at random times for no reason, insomnia, sweats. But I don't know if the humira will work on its own. Miserable now. Wish there were better alternatives to steroids.

 

[SarahBear]

Unfortunately, the effects you listed aren't abnormal. They push the steroids anyways because, while they're very frustrating to be on, it is short term and the long-term benefits outweigh those short-term side effects. Were you put on a maintenance medication as well as the steroids?

You could try enteral nutrition as an alternative to steroids. Follow that link to read about it.

 

[karj]

I remember my bleeding worsened on the steroids last two times I was put on them. It only stopped when they put me on remicade.

 

[karj]

ya was on pentasa at the time, he has taken me off that now as he says research has suggested that it isn't really good for crohn's. I used to take 2grammes a day I think. but it never did any good.

 

[SarahBear]

I was just asking because it sounds as if there was no working maintenance medication to do the job. When I was on Prednisone, my symptoms intensified as well and I thought it only made things worse. However, once the maintenance medication kicked in, things started improving. It just needed that extra kick because the side effects were messing me up.

I hope the Humira does the trick for you.

 

[karj]

Yea hopefully it will