Ensuring vitamin/mineral levels while on Entocort

[Lilja]

Hi all,

I ended Entocort on October 6. D came back 10 days after.

From October 15 till October 27, I lost 3,9 kilos (8 lbs) and I have 18-20 visits to the bathroom per day, even 3-4 during nighttime.

After a visit to the gastroenterologist yesterday I was talked into starting a new Entocort regime.

I am so disappointed that the D came back, but he could not recommend otherwise.

In order to ensure that at least my vitamin & mineral levels do not suffer too much from the weight loss and the fact that Entocort decreases the absorbtion of at least vitamin D, I wonder if it is a good plan to:

Take Entocort in the morning

Take vitamins/minerals in the evening, or at least 12 hours after Entocort.

Is there anything else I could do to lower the impact of Entocort other than this, and of course continue my GF/DF diet?

Frustrated & sad...

Lilja

[tex]

Hi Lilja,

I agree that a relapse is extremely frustrating (and depressing) but please don't be discouraged, because relapsing upon discontinuation of budesonide is a very common experience, and it can happen to any of us.

It can mean that something in your diet is still causing you to react, or it can mean that you just haven't healed enough yet (possibly due to cross-contamination, or an unknown food sensitivity in your diet), or it can be due to the rebound effect that occurs when a corticosteroid is discontinued. From pages 64–65 of the book:

For example, a treatment trial that involved the use of budesonide to treat patients who had collagenous colitis showed that almost 80 % of the patients relapsed within 24 weeks after the treatment ended, and the median time to relapse was 39 days.5 For most medications, the dosage rate can be reduced to a lower maintenance dose for long-term use in order to reduce the risk of side effects, while still maintaining satisfactory control of symptoms. For example, some patients taking Entocort EC to treat MC are able to control their symptoms with only three mg every other day, or even three mg every fourth or fifth day.

And from pages 61–62:

Most GI specialists seem to recommend a tapered withdrawal period of six to eight weeks for budesonide. Experience shows that if we extend that withdrawal period to four to six months or longer, the odds of remaining in stable remission are significantly higher. The final stages of the dosage tapering process seem to be the most critical, and those who spend more time transitioning from three mg per day, to three mg every other day, to three mg every third day, and so on, appear to have the best chances of remaining in remission.

Why is this so? There are no research data available in the literature to explain this phenomenon, but in my opinion it’s due to the effect that corticosteroids have on mast cell numbers. Since corticosteroids suppress mast cell numbers, when the corticosteroid treatment is withdrawn, surely the mast cell numbers will increase as the various body systems attempt to return to a more normal state (or to the state prior to the start of the corticosteroid treatment). As the mast cell numbers increase, this creates a proinflammatory environment and if it occurs too rapidly, the result may be a rapidly increasing inflammation rate, that in and of itself may trigger an inflammatory response. Therefore a much slower withdrawal rate seems to reduce the chances of triggering an inflammatory response that might result in a relapse of symptoms.

And here is reference number 5 from the first quote:

5. Bonderup, O. K., Hansen, J. B., Birket-Smith, L., Vestergaard, V., Teglbjaerg, P. S., & Fallingborg, J. (2003). Budesonide treatment of collagenous colitis: A randomised, [sic] double blind, placebo controlled trial with morphometric analysis. Gut, 52(2), 248–251. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12524408/

Trust me, there are often some bumps on the road back to good health, but if we persevere, we will get to where we are going.

I wasn't aware that taking vitamins or minerals at different times than when the budesonide is taken would matter, but maybe someone else has found other information. IMO, the main point to be considered when discontinuing budesonide is to taper the dose extremelu slowly, in order to minimize the rebound effect as mast cells repopulate the gut after the corticosteroid is discontinue. Sometimes, taking an antihistamine for a while after the budesonide treatment has ended can help to minimize the risk of a reaction due to the rebuilding of mast cell numbers.

Incidentally, I note that you list lactose as a food intolerance under your avatar. I hope that you are aware that lactose is not the main problem with dairy products for most of us — it's casein, which is the primary protein in all dairy products. Therefore we have to avoid all dairy products, not just those that contain lactose

Tex

[Lilja]

Incidentally, I note that you list lactose as a food intolerance under your avatar. I hope that you are aware that lactose is not the main problem with dairy products for most of us — it's casein, which is the primary protein in all dairy products. Therefore we have to avoid all dairy products, not just those that contain lactose

Tex

Thank you, Tex.

Taking the vitamins as long as possible after the Entocort, is just a theory I have; that medications and vitamins are sort of antagonists that don't play in the same orchestra and therefore should be kept apart.

I will correct the "lactose" in my avatar. That is just a language misconception. Thank you :-)

Lilja

[AnnW]

Lilja:

It is not ecessary to separate the supplements so far from the Entocort. Vitamins and minerals are best absorbed when spaced through out the day. If you start to develop yeast problems (common with Entocort) then there are supplements that can help inhibit yeast overgrowth. For now, however, just try to refrain from too many refined carbohydrates and simple sugars as these will feed yeast.

Dr. Ann