hey eveyone im wondering if anyone has tried budenofalk. its a steroid. i have been taking but horrible side effects and not working. just wondering if anyone else has any experience of it? i have a jpouch with chronic inflammation and bowel movements around 20 per day. trying so hard to get this frequency under control. hate these drugs. my gi reckons we might need to try entivyo next (sp?). I did a search on the forums for budenofalk but nothing came up. any advice please?
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Budenofalk is just budesonide, a steroid that tends to be less absorbed systemically than prednisone (i.e. it stays in the gut to some degree). It’s equivalent to Entocort EC. In theory it should have fewer systemic side effects than prednisone, but it sounds like you’re absorbing enough to be unhappy with it. It’s not a great long-term solution, since the side effects tend to become a bigger problem over time. In any case, if it’s not working for you then it’s a lousy short-term solution, too.
What problem are you treating? Is it chronic pouchitis? If so, have you tried antibiotics (Cipro or Flagyl or both)?
For chronic Pouch inflammation antibiotics would be the first line of treatment and biological drugs like Remicade or Entyvio would be the second line of treatment.
Budesonide/Entocort was in my case only used as a supplemental treatment when the antibiotics started to not work as well. It did help me somewhat, but inevitably I ended up on biological drugs.
Remicade is generally favored over Entyvio as a first option biological due to empirical evidence of effectiveness (clinical trials) on chronic Pouch inflammation. I am on Remicade 3 plus years now with no side effects and it cleared up the inflammation in my Pouch but hasn’t worked as well on the scattered inflammation and ulcerated areas above the Pouch in the neoterminal ileum. Entyvio is my doctor’s second option. The one advantage with Entyvio is shorter infusion time- 30 minutes vs. a little over 2 hours for Remicade.
You sound like you should be on biologics and I would ask your Doc if he or she has a reason for favoring Entyvio over Remicade besides the infusion time. I am interested in hearing the reasoning on it.
Shorter infusion time means convenience for the patient and also more money for your doctor’s office as they can move more patients in and out of that infusion room. They have the same reasoning for using propofol over conscious sedation on scopes, despite propofol being 15-20 times as expensive at retail. They want to move patients in and out and collect the extra insurance $. Don’t allow yourself to be persuaded to have treatments that are perhaps less efficacious than others because they are “convenient” or make more money for your doctor. Do what is right for you and you illness.
I'm on both Budesonide and Entyvio along with Imuran. The combination of medicines has helped my pouch behave better than before I started with it. (I actually feel like I have a life outside the bathroom now.) Granted I've been on Budesonide for 2 1/2 years and the Imuran and Entyvio just a few months. I was on Humira before that which didn't work at all for me and then Remicade which caused horrible side-effects for me. Will know if the inflammation is actually gone when I get my next scope in April.
All that to say, it is it time to talk to your doctor about new options. Twenty times a day in the bathroom is not an enjoyable way to live. Also if you are having horrible side effects, then Budesonide is not working for you. My doctor told me with the Remicade side effects that even if it was helping, it wasn't worth it if I felt terrible after each infusion.
Hoping you get some good answers soon.
Hi everyone thanks so much for taking the time to reply.
Scott it is Chronic inflammation that I am treating. I have tried both flagyl and cipro previously. currently taking cipro with the budenofalk.
CT Barristar Thanks for that info I will ask the dr why he is favouring entivyo over remicade. i just want the one thats the most effective with the least side effects.
Still Standing I agree that the side effects are not worth it for me. I would rather the constant bathroom trips than the insomnia, headaches and depression.
I am living in Australia but had all my surgeries and jpouch in Ireland. My GI sent a request to my surgeon in ireland for my surgical notes. not really sure what he would be looking for. any idea?
Thanks again everyone
Dee
