If Your Doc Balks At Renewing Your Entocort Script . . .

[tex]

Hi all,

If your doctor refuses to renew your prescription for Entocort (budesonide) even though you feel that you need to continue using it, show her or him this study:

The new study began with an eight-week open-label induction period in which 110 patients received 9 milligrams of oral budesonide, tapered to 4.5 milligrams daily. Dr Falk Pharma GmbH, whose brand Budenofalk was used in the trial, funded the research.

Patients who achieved clinical remission were then randomly assigned to 4.5 milligrams a day of budesonide or placebo for an additional 52 weeks, followed by a six-month treatment-free follow-up. Because the drug only comes in 3 milligram capsules, patients alternated between taking one and two capsules a day.

During the open-label phase, 93 of the 110 patients enrolled achieved remission, with a median time to remission of 10.5 days. At one year, 61.4% of the patients on budesonide were still in remission, versus 16.7% of the placebo group (p<0.001).

One Year of Low-Dose Budesonide Safe, Effective for Collagenous Colitis

Or, if you don't want to register at Medscape in order to read the article, here's the link that you can give to your doctor. Medscape is universally respected by medical professionals, so your doctor shouldn't argue about this one.

http://www.medscape.com/viewarticle/835749

Tex

[nerdhume]

My GI on Tuesday assured me I will be 'cycling' on & off Uceris as long as it works for me. In just a few days it had me back in remission and now I am back to 1 norman each morning. I do believe the diet changes have a major impact.
The next step is Humira, if my condition worsens (dx mild to moderate UC currently). I asked about side effects with Humira vs Uceris and he said Humira has more long term studies because it has been around longer. Some RA patients have been taking it for 25 years without problem.
What I don't understand is why if Uceris is budesonide the long term studies for the generic would not apply.

[tex]

Theresa,

Please be aware that we have a handful of members who were/are using Humira or one of the other anti-TNF medications. None of them use it to treat MC — they use it to treat other AI issues, such as psoriatic arthritis, or RA, but to the best of my knowledge (as of their last update, at least), not a single one of them has ever been able to control her D, despite rigid diet control.

IMO, the anti-TNF drug is clearly the cause of the D, because most of them posted that their symptoms were much worse following each treatment/infusion. But unfortunately I was never able to convince any of them to try to do without the anti-TNF drug, to verify whether it was the cause of the D. Some of them were/are making 15–30 trips to the bathroom each day, but they continue to stick with the drug, apparently mostly because they were taking it before their MC symptoms appeared.

Anyway, please keep this in mind, and if you do decide to go with an anti-TNF treatment program, please keep us posted, because this class of drugs appears to be a huge question mark for MCers, and we need reliable data on it.

and he said Humira has more long term studies because it has been around longer. Some RA patients have been taking it for 25 years without problem.
What I don't understand is why if Uceris is budesonide the long term studies for the generic would not apply.

He's basing his claims on the fact that Humira has a 25 year track record. Uceris has only been available for what? . . . about 2 years?

But you are quite correct, anyone capable of logical thinking (hopefully your doctor will fall into this category) will clearly understand why the budesonide study would imply that Uceris should be just as safe, for long-term use. In fact, it should be much safer, since less is absorbed systemically.

He probably is not aware of the study that I posted about, because that is a brand new report, dated December 03, 2014. You might print it out (noting that is from Medscape) and give him a copy to review. Note that there are many pages in the complete article. You may need to select only the pages that important to the topic at hand, because no doctor is likely to take the time to read a very long report. When handed a long report, many doctors will just set it aside and forget about it. They may fully intend to read it someday when they have the time, but you know how that goes.

Tex

[nerdhume]

Thanks Tex for the info on Humira. I was not aware of the track record for that. I originally tried Lialda and it made me have more pain.

Seems like some things like Imodium cause more pain and personally I prefer WD to pain

Also seems like previously you mentioned the offending food staying longer inside might create more irritation than passing through quickly.

Hopefully I will continue to be able to control the symptoms with diet and Uceris. I believe this relapse occurred because of the ragweed allergies, and trying to discontinue my allergy meds. I have in the past been able to be off them for the winter months. Now with MC obviously I will not be able to. The worst day of the relapse I was in the 12-15 WD trips during the day and 3-4 at night disturbing my sleep. The Uceris changed that the first day to 3-4 trips and then after about 2 weeks I was back to once in the morning with my coffee.

The GI didn't indicate any reason for cycling Uceris other than it seems to eventually stop working and cycling off and on would extend the effectiveness. At my age I'm not too worried about 25 years from now

Again let me say I am so very grateful for the support of this board.