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Anyone take Budesonide/Entocort long term?

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Posted 7/19/2013 3:44 PM (GMT 0)
Been on Humira injections every two weeks for about 3 years. Once in a while my doc puts me on Budesonide for a few months. When I'm on the Budesonide, I feel so much better. Doc won't keep me on it continuously. After I go off of it my old symptoms reoccur and I don't feel as well. I am wondering if there is anyone out there that is on Humira and taking Budesonide continuously and would want to share their status and control of CD. Thanks.

Post Edited By Moderator (Ides) : 7/19/2013 5:20:31 PM (GMT-6)

Posted 7/19/2013 11:21 PM (GMT 0)
Just edited your post to add a subject line. Hope someone can answer you.
Posted 7/19/2013 11:28 PM (GMT 0)
I'm not on Humira but I have been on budesonide for 1 year and 7 months now and still continue. My GI told me that I can live w it life long. Me too, can't get off it. Whenever I reduce the dose, I flare up.
Hope you feel better soon :)
Posted 7/19/2013 11:34 PM (GMT 0)
I was on Entocort for about three years. I ended up with avascular necrosis in my shoulder and diabetes. Hope you have better luck.
Posted 7/19/2013 11:36 PM (GMT 0)
I asked this same question a couple of weeks ago. I've seen my GI since then and it's his plan to wean me down from 9mg to 6mg, then 3mg for long term maintenance. He says some people end up staying at 6mg.
Posted 7/20/2013 1:45 PM (GMT 0)
Thank you both for your quick response. The GI doc has put me on the Budesonide off and on for short periods of time. Say 60 days then off. I'm off right now. How did you ween off the 9 to 6 to 3mg? I took it upon my self to go from 9 for 2mo then 6mg for 1 wk then 3 mg for 1wk and stop. Does 3mg continuously help your conditions? Thanks again.
Posted 7/20/2013 2:01 PM (GMT 0)
Just picked up post by Minnietoty. Thanks. Can I assume that when you drop from 9 to 6 mg that your symptoms are worse? Does 3mg do you any good at all? Does any one know whether the longer you take Budesonide that you might become immune to it and it does you no good at all after a while?



Crohns diagnosed in 1999. Resectioned (14" cut out in 1999). Imuran--complete bust(Aged 20 yrs in 4 weeks). went on Humira injections every 2 weeks (current med) with occasional add of Budesonide). 6MP add failed like Imuran..couldn't hack it. So far Budesonide assists Humira in my condition. GI Doc still looking for something to add to Humira in that Humira is not completely taking care of the inflammation.
Posted 7/20/2013 6:43 PM (GMT 0)
Crazylegs, when I taper Entocort off I do it in this way. One day 6 mg and the other day 9 mg for 2 weeks. So, if you add 6 + 9=15 divide it by 2 = 7.5 mg. So, this is not a drastic reduction. Then, I stay on it for other 2 weeks and then reach the 6 mg. I've been on 6 mg since I started it in November 2011 till February 2013. I was doing perfectly well. But in February 2013, I started to flare up and symptoms got exacerbated, so my GI decided to increase the dose to 9 mg.
As far as I know, 9 mg budesonide equal 40 mg pred. So, with a simple calculation 6 mg equals around 26 mg pred. This is a high dose for me. When I was on pred and whenever I went lower than 20 mg, I used to flare up.
J-web said that her doctor mentioned that one can stay at 6mg. I intend to do this when I see my GI. I know my intestines very well and know that they only respond to steroids whether pred or budesonide. Taking Imuran is a trial and error experience that I hope it succeeds.
Posted 7/21/2013 8:24 AM (GMT 0)
I stayed on Entocort for about 3 years before finally moving onto Cimzia. I would do 6 weeks at 9mg, then go down to 6mg. My Dr. said I could stay on 6mg indefinitely as long as I was feeling good, and bump up to 9mg for a 6 week stint as needed. Unfortunately, this didn't give me enough control. I went kicking and screaming to a biologic (best decision I ever made though!) Once I went onto Cimzia, she allowed me to stay on Entocort for 3 months as a transition period, however after that I wasn't allowed anymore. Her thoughts, too stressful on my immune system. Anecdotally, I had far more infections in those first few months while on both than ever after that...but I'm sure that could also be explained by my body getting adjusted to the Cimzia. I'm about to test this theory, as I am going to re-load the Cimzia next month. I will let you know if the immunity issue was from loading, or from combining the two.
Posted 7/21/2013 9:09 PM (GMT 0)
KMM13 Glad to hear from you. looking forward to your results on the reload of Cimza. Trust it will work wonders for you. Your info says you were diagnosed in 2006. Can I ask what you were diagnosed with ? Crohns ? If so is Cimza the only med you are on? How much dosage and how often? Thanks. Crazylegs
Posted 7/21/2013 9:44 PM (GMT 0)
Yes, I was diagnosed with Crohn's in 2006. I had a pretty typical presentation, with inflammation in the terminal ileum and first part of the colon. My colon has cleared up over the years, but the terminal ileum still gives me problems. I have a stricture that has caused some very painful partial obstructions and a fistula between two loops of bowel. I've also had some adventures with extra-intestinal symptoms here and there. Right now I only take Cimzia. I take 400mg once every 4 weeks. For the most part it works very well for me. However, as time has passed it has started to wear off more quickly for me, so I often start having symptoms during the several days before my shot is due, and for a day or two after until it has a chance to get into my system. That's why my Dr. suggested re-loading me, so we can boost the levels in my system back up and hopefully avoid that wearing off period, which has grown to up to a week out of the 4 week cycle. She's never tried doing it with Cimzia (but has for other biologics) so I guess I get to be the guinea pig! I'm hopeful that it will work though.
Posted 7/22/2013 12:01 AM (GMT 0)
KMM13: Hope it works for you. Don't know anything on Cimzia. Presently Taking Humira shots every 2 weeks. Entocort/Budesonide has worked well with the Humira for me, but the GI docs don't seem to want me on it for very long. I feel a lot better and my stools are more solid. The cramps are mostly eliminated while I'm on the assist. Soon as I got off the Budesonide, my cramps came back more frequently and my energy level has fallen off and feel worse. Your 3 yr stint on the Entocort was encouraging to me and I plan to press my GI doc to allow me to get back and stay on it if possible.

I take a B12 shot once per month. I take a lot of iron. I take digestive aids and probriotics to help my digestive tract. All of these to help my energy level, which I never seem to be happy with. Through it all GOD is good to me. Crazylegs
Posted 7/22/2013 3:37 AM (GMT 0)
I hope you find an answer, but i thought i'd throw in my 2 cents. I was on entocort for about 3 years continuously (this was awhile ago, so I don't recall my dose, but I'm assuming that I was at the max dose). My GI kept trying to wean me off of entocort, but everytime she did, i would flare. Even though entocort has a very low rate of systemic absorbtion, I ended up with steroid induced cushings. It took a few months to peice everything together because no one suspected the entocort. As soon as I got off entocort, my cortisol levels returned to normal. I tend to over-react to medications, so don't take my reaction as typical, but i'm not a proponent of long term entocort use. If your doctor allows you to stay on entocort long term and you have any odd symptoms, let him/her know right away even if those symptoms don't seem related.
Posted 7/22/2013 11:17 AM (GMT 0)
my GI said i could stay on entocort indefinitely unfortunately it did not work for me sadly just as everything else we tryed either i have a reaction or does nothing
Posted 7/22/2013 3:19 PM (GMT 0)
mbw1103 & asweetroy: Thank you for your input. Still plan to press GI doc to put me on it (budesonide) long term. I have been on 6mg/d the first time and it helped. This last time they put me on 9mg/d. Not sure why the hiogher dosage, but think I will press for 6mg long term and see if it helps long term.

mbw1103: If you can determine the dosage that you used that produced Steroid induced Cushings, please let me know. I for sure will watch my symptoms. I felt better and ignored any thing else in my short term use. Thanks.

asweetroy: I'm on the 40mg Humira pen injections every two weeks. It has helped much but isn't completely doing the job so the GI docs have looked for an assist with other. 6MP did not work for me. A sister to imuran which almost did me in (aged 20 yrs in about 3 weeks...blood analysis shot through the roof..couldn't wait to get off of it.

There has been some thought about increasing the frequency of Humira to maybe weekly instead of every 2 weeks. GI doc seems to be hesitant as it isn't quite taking care of the inflammation as if I need something else. Any thought out there on this forum to address that? Crazylegs
Posted 7/22/2013 4:53 PM (GMT 0)
I am new to Healing Well. Two years ago I was DX with UC and spent a week in the hospital. I was put on asacol at that time, along with miralax, prevacid, colace. For 2 years I have had no issues. In May of this year I went to a walk in clinic and was put on augmentin for upper respiratory infection. Two days later I started with uncontrollable diarrhea, and severe abdominal pain. I stopped the med and took immodium so I could go to work for one week I did not eat. I ended up in the ER CT showed colitis they said and sent me home with pain meds, ABT's (Cipro and Flahyl) and suggested a follow up with gi. I was becoming dehydrated and already losing weight. I was unable to keep the medication down nor anything else. Went to Gi who did colonoscopy and added a premethesis test. He stated the colonoscopy was positive for chrons. Again I was started on asacol, cipro flagyl, hydrocodone zofran. Needless to say it took everything to just get and keep the zofran down. My condition was getting really bad and I went back to the ER. I was admitted for 2 weeks. During which time I underwent very invasive testing. I was on IV antibiotics fluids to rehydrate. I was told i was malnutritioned. GI was insisting on surgeon to take out GB. Surgeon said no he did not think it was the gall bladder and was not comfortable. I was started on medrol sol dol and it made me shake. I was so fatigued and physically exhausted and weak and felt like I could not sit still. There was talk of a putting in port to feed me. I was not in favor I said I would do IV feedings but not a central line. After 2 weeks I was sent home with no relief other then feeling more hydrated. The pain nausea vomiting fatigue weakness was all there accompanied by depression setting in quickly. The doctor sent me home with zofran asacol xanax hydrocodone. I was getting no relief. I was started on endocort in which I had a reaction of rash, and severe head acheand shaking. I can understand after reading other posts on the frustration. I felt like my family did not believe me i even felt like the doctor was not believing me. I told him that if he could not figure it out to refer me else where. I went to my primary for hospital follow up. I was referred to USF ( local university). One last visit to Gi still insisting on f/u with surgeon for gall bladder wanted to order gastric empty scan. Two days later went to University doc. I was told first that all the invasive testing was unnecessary for my DX. He said I have chrons that is through out my gi tract not just in the TI. He felt that the nausea and vomiting is caused from inflammation. He talked about biological remicade and humira I am scared to death because of the side effects. I notice that a lot of you have been on these for years. Can I ask if you experience any side effects? Will I ever be able to stop these meds? I guess my question is will I get better so I can stop all meds? I was started on prednisone 40 mg daily. I feel shaky, a few hours after taking I start to get a bad headache. I also get bad pain in my bones and they feel hot. Mostly my feet knees hands shoulders. Does anyone else experience this. He said he wanted to start this and do 1 test in 2 weeks then get started on bio. I am scared to death. This is so much to absorb. I was hoping to get some feed back from those of you that have been on treatment for a while. Is the side effects of the prednisone normal? I don't want to stop it is normal and going off will prolong further treatment. I look forward to sharing with each of you and hope that I can be of comfort as we go through this journey of healing together. Thank you in advance for sharing. I pray that there will one day be a cure with out horrible side effects.
Posted 7/22/2013 10:59 PM (GMT 0)
mollys25: Really sorry for all you have gone through and what is to follow. Different people respond varied ways with meds. It's up to your GI doc to help you. Just log and inform GI doc all of your symptoms reactions and meds that radically affect you.

I was dx with Crohns in 1999. Experienced the pain, vomiting and dry heaves. Bed rest for 3 days dealing with the pain then up but weak and exhausted in recovery. I could never tie the attacks to any certain food. They took out 14" of my colon part small intestine and part large at the terminus valve joint. This is by the way where my current restriction is. I was on asacol for several years not getting a whole lot of relief. My attacks seem to be less but no better. Later years a GI doc told me that asacol was useless that it is like taking a placebo. Tried imuran....this liked to have killed me...3weeks usage over the Christmas holidays when I could not reach the GI doc, I aged 20 years in my body..colud not walk hardly get up...my blood levels shot out of whack.. Anyway Imuran did not work for me but is working for other people, so take my result with a grain of salt for everybody. I started on Humira injections every two weeks and added B12 shots monthly. I was always taking many vitamins. Because of my tiredness,low energy level, Ive increased iron. I also went to digestive enzymes and aids and probriotics for my digestive tract. If you have read above in my other posts have added Budesonide for a month or two to assist the Humira. Tried to add 6MP at a very low level with humira and that did not work, similar to Imuran effects. With Humira I have had very few attacks and they have been minor compared to when I started. There seems to be ongoing inflammation then healing and scarring throughout my intestines. Due for a CT next month to view my condition along with the restriction size and it's narrowing. The Budesonide does wonders for me in reducing the cramping and trips to the John. I'm hoping that I can get on the budesonide(entocort) long term. With out the cramping and trips to the John,I have more energy and feel so much better. This has been my story. Others will vary with different meds which work for them, so I hope you find the right combination for you and real soon. Diet is good to watch. With the inflammation going on there are better foods for you. In the morning I take a fruit smoothie that I make up in a blender using fresh and frozen fruits. I set down with a guy who had crohns for many years who had taken every med in the books. He taught me about the Fruit smoothie, probiotics, etc and diet......... he is med free and in total remission....so.... what about that. Different strokes for different folks. Take care and may God give wisdom to the doctors that handle your situation.
Posted 7/23/2013 2:43 AM (GMT 0)
Crazy legs thank you for your quick response. I guess I will have to play the waiting game and see how I respond to the infusion treatments. I am not a medicine person so I am really scared. I just can't take the pain anymore. The nausea and vomiting leaves me so weak. My social life is non existing and I been out of work for 2 months so financial distress is on the rise. I was told from one doctor that I may want to consider training in another field. Being a nurse they said my immune system will pretty much be shot. The unknowing is killing me. I just want to know when I can and if I can go back to work. I read so much of people saying they have been debilitated for months at a time. I want to do everything possible to avoid surgery. I am shocked being a nurse that I was not aware of how many people are affected by this disease. It is terrible. How back to normal is your life? Do you have a social life are you able to hold a job? I just wish I knew what to expect. My short term disability is giving me a hard time. Praying for quick healing results. Thanks again for your response
Posted 7/23/2013 11:58 PM (GMT 0)
mollys25: I was fortunate in that I was dx later in life. I was just in the stage of retiring when I had my attacks and then resection surgery after 14" intestine removed. Those attacks were so bad i can't describe them. But that is what you are going through. Trial and error was the process until settling in on the med that works to a point of control with attacks, pain your bowels. I'm not sure at the point that I had troubles how I would have handled work as you are going through. Under control with the right meds you will be OK. Trust you will get that help soon and reach some normality. May GOD bless you with the help you need at this time in your life. The forum has been great for help and friends who care so stay on it. Someone out there may be be in the same boat and makeup that can provide you with the right info that you can take to your doc.
Posted 7/24/2013 2:34 AM (GMT 0)
Crazy Legs : again thank you for your in put it means a lot. I am very happy I found Healing Well. Life has been tough the past few months. I sometimes think that people think how could she be ill this long. Like I have said I am amazed that so many suffer and being a nurse I was never aware. I will certainly continue to check out the forum. Unfortunately it is not time for retirement for me. I need to figure out something on top of the illness comes all the other stress. I hope we can keep in touch. My first infusion is suppose to be next wednesday. I am really nervous and just hope that it is best the side effects scare me. Talk soon
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