Cholestyramine ending and Budesonide beginning

terre · Post by **terre** » Fri Mar 25, 2016 3:01 pm

I plan on finishing the Cholestyramine prescription I am currently taking, but if I see no improvement at the end, I plan on starting Budesonide.

My question is, if I begin taking the Budesonide, how long should I wait between stopping the one and beginning the other?

The Budesonide says to take 1 capsule three times a day....I thought I read where you actually take all three at the same time....does anyone know which is correct?

Thanks,
Terre

jlbattin · Post by **jlbattin** » Fri Mar 25, 2016 3:04 pm

Terre,

You take them all at once. I always just took them when I first got up.

terre · Post by **terre** » Fri Mar 25, 2016 3:27 pm

Thank you Jari! I thought that's what I remembered.....man, I'm glad I hadn't started them yet or else I would take one 3 x day.

Hopefully someone will post about how soon I can start the Budesonide after taking the Cholestyramine.

Terre

Post by **tex** » Fri Mar 25, 2016 3:35 pm

Terre,

Jari is correct. The proper way to take any corticosteroid treatment is once per day, preferably first thing in the morning. Corticosteroids mimic the action of the cortisol produced by the body, and that peaks in the morning.

That said, you can take them on any treatment schedule you prefer, but they won't be as effective as they would be if taken all at once, first thing in the morning. I'm surprised that your doctor doesn't understand that. That's basic information for the use of any corticosteroid. I'll see if I can find a budesonide label.

OK, I couldn't find where AstraZeneca has a label posted any more, but I found a PDF of their label at the FDA. If you scroll way down in the document, you can find this dosing information:

DOSAGE AND ADMINISTRATION

The recommended adult dosage for the treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon is 9 mg taken once daily in the morning for up to 8 weeks. Repeated 8 week courses of ENTOCORT EC can be given for recurring episodes of active disease.

http://www.accessdata.fda.gov/drugsatfd ... 008lbl.pdf

You can start the budesonide any time you want, just don't take any cholestyramine until at least 4 hours after taking the budesonide.

Tex

terre · Post by **terre** » Fri Mar 25, 2016 4:10 pm

Thanks for sending the link Tex....it may come in handy to refer back to. Matter-of-fact, it is what reminded me that I need to see my eye doctor to check pressure while I am taking it.

I was shocked that my doctor prescribed as he did....I went through his nurse so something may have gotten lost in translation (which is scary). I also called my pharmacist and he said that was the way it was prescribed, but I could take it once a day if I wanted to (wasn't very helpful).

Since I may be winging this by myself....I know I start out at 9mg then taper down very slowly....and I suspect that will take longer than 8 weeks. I'm hoping someone can guide me as to the best course to get the best outcome. I know it is different for everyone, but just in general.

Thanks so much,
Terre

jlbattin · Post by **jlbattin** » Fri Mar 25, 2016 4:15 pm

Terre,

You'll pretty much know when you need to taper down. I started taking 9 mg somewhere around July 1st last summer. I am down to 3 mg. every 3-4 days now and doing ok. When you get constipated, you'll know to reduce your dose.

I've had a little minor setback (sinus infection from hell and a hacky cough that comes alive at night). I had to finally go see my PCP and he prescribed arithromycin to give me a little help. I was terrified to take it but I'm doing ok with it and I think it's helping. Anyway, my point was that anything different to my system upsets my daily bowel habits (stress, sinus infection, etc.), but you'll know when you need to cut back. It is different for everyone.

terre · Post by **terre** » Fri Mar 25, 2016 4:19 pm

Jari, thanks for your helpful post. I hope you get over your sinus infection soon and that the arithromycin continues to be kind to your system.

Terre

Adelaide · Post by **Adelaide** » Fri Mar 25, 2016 4:41 pm

Hi Terre

My doctor put me on Cholestyramine first. When that didn't work he put me on Mesalazine for a couple of weeks. Then he switched me to Budesonide. This was all done with no breaks in between medications.

terre · Post by **terre** » Fri Mar 25, 2016 7:06 pm

Linda, thanks for posting. I see you joined December 2015....not sure when you were diagnosed? How is the Budesonide working for you (good I hope).

Terre

Adelaide · Post by **Adelaide** » Sat Mar 26, 2016 3:18 am

Hi Terre

I was only diagnosed in December 2015. The Budesonide has not put me into remission. I still have symptoms though they have lessened. I have not been 100% with my diet yet but I know that is what I have to do. I am thinking I may have to do the full elimination diet. My GI doctor said to me that everyone has improvement with Budesonide and I am pretty sure that all his patients don't follow a strict diet. So I wonder what makes me such a tough case.

I hope you do really well on the Budesonide.

TaiaK · Post by **TaiaK** » Sat Mar 26, 2016 2:28 pm

Budesonide did not put me into remission either. I took it from May 2015-Nov 2015 with a taper. My GI also told me that all her patients respond which I found difficult to believe (and like you said its doubtful that these patients are altering their diets). After the expense and potential side effects long term, I decided to be done with it and move on to other ways to reach remission. I also started my diet changes in May of last year. It was dissapointing it didn't help and my GI's statement made me very sad that day. I felt as if it was my fault it didnt work. Havent been back as I don't feel she has much else to offer....

Taia

Adelaide · Post by **Adelaide** » Sat Mar 26, 2016 3:29 pm

Thanks for that Taia, now I don't feel such an oddity. My GI doc said on the phone that if I don't respond there is another tablet he can try. That has me a little concerned!

Gabes-Apg · Post by **Gabes-Apg** » Sat Mar 26, 2016 4:14 pm

Taia and Linda
you are definitely not alone, in my time here on the forum i have seen many people try various medication protocols and achieve limited success (even with strict strict bland diet)

i dont say this to scare you or dampen your spirits - for some MC is not the 'root cause' of the health issues it is moreso a symptom contributing to multiple issues.

aside from the intensity of trial and error of figuring out your MC management plan, the other key element to the wellness journey is time and patience. Healing for some takes time, months not weeks. and healing will only happen once majority of triggers are minimised and the body has the right nutrients to heal.

fixing deficiencies like Vit D3 and magnesium etc can take 8-12 weeks.

hang in there, week at a time, keep expectations real.
In 2011 a biopsy stated my MC was in remission, since then I spent 4 years with multiple AI issues in chronic state. It took me a while to figure out root causes, and two years of the right supplements, right eating plan, better lifestyle choices, to fix deficiencies /chelate toxins, wholistic treatments etc I am seeing improvements...

as I said above I dont say this to scare you or unsettle you... there are so many things that affects wellness, and our ability to attain remission. for some of us, we have to dig deeper into the maze to figure out what is going on.

some things that come to mind
- dental health - do you have any temporary fillings / root canal teeth / gum issues?
- external triggers is there any mold at home or workplace? dust, excess pollen, pollution
- are you a risk for heavy metal toxins? grew up or lived near industrial area, power plant, copper/gold/zinc mine, or mercury fillings,

once we figure out what is contributing to issues, and resolve it - things do get better...

Post by **tex** » Sat Mar 26, 2016 6:33 pm

TaiaK wrote:Budesonide did not put me into remission either. I took it from May 2015-Nov 2015 with a taper. My GI also told me that all her patients respond which I found difficult to believe (and like you said its doubtful that these patients are altering their diets). After the expense and potential side effects long term, I decided to be done with it and move on to other ways to reach remission. I also started my diet changes in May of last year. It was dissapointing it didn't help and my GI's statement made me very sad that day. I felt as if it was my fault it didnt work. Havent been back as I don't feel she has much else to offer....

This seems to be a habit/routine with many specialists (not just gastroenterologists, but they seem to be some of the worst). They pretend that the treatments they recommend are highly effective, which is a psychological trick to transfer the blame to the patient, which of course boosts their own morale so that they don't have to feel as though they have failed the patient.

If you look at enough budesonide trials you will see that in general, it typically helps in roughly two-thirds of the cases where it is used. That doesn't mean that it brings complete remission in all those cases, it just means what it helps to relieve some of the symptoms enough to be able to say that its benefits outweigh it's negative effects. And according to research trials, when the treatment is ended, up to 80 % (or more) of patients relapse if they have not changed their diet. And as you say, we know that most of these patients do not make the necessary diet changes to allow remission. If you do the math you will see that this results in less than a 15 % remaining remission rate after the dust settles.

That hardly justifies their self-serving claims.

So how do these doctors get such fantastic results? I can see 3 possibilities:

1. Maybe they have very vivid imaginations.

2. Maybe they are very forgetful and they just forget all the cases where they weren't able to help the patient.

3. Maybe it's a psychological maneuver designed to save face and to alter the mindset of patients in order to minimize the risk of too many patients leaving negative remarks on followup surveys sent by the hospital or partnership.

Regarding the last possibility: When patients tend to blame themselves for a failed treatment they are presumably less likely to respond to a survey, and if they do respond, they are far less likely to blame the doctor for a failed treatment (because they would feel guilty about doing that if the treatment failure was not the doctor's fault). Since the advent of the so-called "Affordable Care Act", all doctors are rated on their performance, and if their performance rating does not meet certain specs, it hits them where it hurts, in bonus payments that will (or will not) be made a year or two down the line.

But this rating system is not the main reason why these doctors do this — many specialists have traditionally tried to shift the blame to patients whenever a treatment fails. Apparently it's mostly a face-saving attempt, so that they can sleep better at night after charging a patient big bucks for their "expert" advice. If you search the archives of this discussion forum, you should be able to find posts where members have complained about this practice (of blaming the patient) for many years — from way before the "Affordable Care Act" was even envisioned.

I don't know how anyone else feels about this, but I realize that they are only human, and I don't expect them to be able to perform miracles. I do however believe that they should tell the truth, even when the truth hurts (them). They don't seem to have any problem telling the truth when it hurts the patient. And since they consider themselves to be "experts", and indeed the state confers special rights and privileges to them because they are certified as "experts", that leads me to hold them to a higher standard than my PCP (who does not consider himself an "expert").

Tex

terre · Post by **terre** » Sat Mar 26, 2016 8:49 pm

I've been out-of-town and just catching up......I'm so sorry Taia and Linda.....I was so hoping the Budesonide was helping.

Tex, what you wrote was completely honest....so sad we are felt to handle the blame when we feel we did our best.....and then left wondering what we "woulda, coulda, shoulda" have done to have a positive outcome. They should tell us what we already know.....here's a medicine that works for some, but not for all.

After reading all posts, it makes me wonder if I even want to try the Budesonide if all it might do is slow things down.....that is what the Cholestyramine is already doing.....even though still having WD. Also, do I want to trade the side effects of the Cholestyramine for those of the Budesonide (which seem to be worse).

Thanks to everyone for their input!

Terre