Prednisone AND budesonide? Is it normal to be on both?

[Nikkio]

Hi guys, I'm new to this forum and I'm really just hoping somebody can help. I'd never heard of Crohn's disease until last November when I started bleeding out of nowhere. They did a CT scan and found inflammation in my terminal ileum, referred me to a GI doc, and it's all been downhill from there. My GI doctor seems like he knows his stuff but rarely seems to have the time to answer my questions or explain anything to me and never calls me back so most of what I know about Crohn's I had to find on google. When they first found the inflammation they of course gave me antibiotics and once I finished them my doc didn't get back to me for almost 2 months. Out of the blue, while I was still waiting for a response, I was shopping and just doubled over in pain. At the ER they told me the swelling had gotten worse, and after that trip to the ER my doc finally called me back and prescribed budesonide. After being on budesonide a few weeks I was gaining some weight back and feeling alright and then all of a sudden I couldn't hold down food anymore and started having the severe abdominal pains again whenever I tried to eat. My symptoms aren't as bad as they were when they first diagnosed me a few months ago (constant nausea, pain, diarrhea, fatigue, chills, nights sweats, muscle aches, bleeding). Now I just can't eat. I lost all the weight I've gained back in that short time, I feel nauseous around the clock, and when I do try to force something down I feel it fighting it's way down the whole way. When he thought I was going into remission he was about to give it a few more weeks and put me on humira. Once I started feeling sick again he decided instead on prednisone and prilosec (the prilosec for possible ulcers he said). I just picked them up today and I'm worried that this is too much. When I googled budesonide and prednisone all I found was one vs the other, not them combined. At this point all I can stomach is ensure a few times a day and between all these pills and my vitamins I will literally be taking in more pills than food. Is this normal? Safe? He didn't say to stop taking the budesonide but I can't find these two being used together. Has anyone ever had these both prescribed? All I can think is that maybe he's just really trying to bring the inflammation down and control my symptoms but I just can't see how loading my intestines with 9 pills a day will help calm things down any. I feel like at 23 years old, I shouldn't be taking more pills than my grandma. Any advice or insight would be greatly appreciated. Thank you.

 

[CassMarie]

Hi there!!

I have been on 90mg of budesonide and 40mg of prednisone for the past 3 months or so.. they generally do this because budesonide takes a while to build up in your system and the prednisone will help with the symptoms until the budesonide is working in the ileum where it is meant to. Prednisone will be throughout your entire body. I was taking zantac for the heartburn because at times it was unbearable and quite constant. I am coming off of both meds right now because they aren't working for me.

Also, if it helps calm you a little.. I'm 24 and just got diagnosed in January but have been sick for about a year.. so since I was 23. I was on 7+ pills a day. I am also on Ativan because I have been so insane on the prednisone. Now as I'm coming off of the prednisone and budesonide.. I am starting 2 antibiotics to try to help the symptoms until we schedule my surgery.

I wish you the best of luck and I hope you start feeling better!

 

[Misty-Eyed]

Yeah I've been on both too. I was dependant on the pred so they prescribed me budesonide to get me off the pred. Unfortunately it didn't work though!

Hope you feel better soon!

 

[Mark in Seattle]

Every time I take prilosec I feel it clearly make my CD burning pain worsen, so I try to avoid PPI meds when I'm flaring. I've wondered why. I figure when the stomach acid is diminished, bad bacteria may be permitted into my small bowel. Don't know if my logic is correct or if this applies to you or anyone else with CD, but just thought I'd mention it.

I've done budesonide (Entocort) 9mg/day, but have never tried it while on prednisone. At least with budesonide I've never felt any side effects, unlike prednisone.

Maybe you could try elemental diet and/or an immunomodulator like Imuran, or maybe go right for one of the biologics, such as Humira. The studies I read nowadays seem to indicate that some of the researchers are tending to believe that the biologics may be the way to go early in the course of the disease to alter the natural history of the disease. If you're new to all this Crohn's business, you might search around on pubmed.com and/or sciencedaily.com. CCFA.org is another site/organization you might check into to learn about CD.

In any case, a low-residue diet is really important when flaring. I tend to stick with things like scrambled eggs & white bread.

 

[Miss Underestimated]

Take the medicine - he's trying to get it under control.

 

[Nikkio]

Thanks for the replies! I will try them and see how it goes. I'll also check out those sites for more info, and keep an eye out for the prilosec. I feel much better knowing that it wasn't just an oversight on the part of my doctor. Thanks again =)