Newbie with Uceris tapering question

[viltsen]

I was diagnosed with MC (collagenous colitis) about 6 weeks ago. Up until November of last year, I was about as healthy as a person can be, although I do have a family history of lactose intolerance and gluten sensitivity. I cut out lactose and gluten 6 years ago to avoid occasional urgent bowel movements and for 6 years, as long as I didn't accidentally eat dairy, I was fine.

Then, last December, my digestive system basically collapsed. In January, I could eat virtually nothing: even small amounts of rice and chicken resulted in black, watery D. I couldn't leave the house; I lost 10 pounds in a month which is almost 10% of my body weight. Immodium did nothing.

After a colonoscopy and diagnosis, I was put on Uceris and within 5 days was back to a normal human. That was 6 weeks ago. I am now finding that if I expand my diet too much, my stools get soft again. I've been trying to follow the FODMAP diet (but with no fruit) for the last week because I'm desperate to find something that works before I go off Uceris.

I saw my doc yesterday and they are willing to let me go 90 days on Uceris because my system doesn't seem to be ready to go off. (So far I think my doc is okay in that they are appropriately focused on diet and also willing to extend the course of Uceris.) However, she talked about tapering after 90 days--maybe going to one pill every other day. She didn't seem to know whether Uceris comes in 3 mgs.

Based on an earlier post I saw, it seems the folks on this forum either believe Uceris can't be tapered or shouldn't be or...?

(Also, I am fascinated by the relationship between Uceris/steroids, MC and hormones. I can't shake a suspicion that my digestive system crash is related to the onset of menopausal symptoms, at least in me. And my night sweats returned when I went on Uceris.)

Finally, in case it is of interest to those of you who are MC experts, my sister has the exact same issue as I do. Hers came on more gradually, starting at an earlier age, but it is in large part identical.

[nerdhume]

I took Uceris for 2 months the first time and then stopped without tapering. That worked fine for me. I take it for occasional flares and I stop taking it when it causes constipation. I don't think it has to be tapered because it dissolves in the colon and doesn't effect the entire body the same way as other steroids.
Hot flashes, especially at night is one of it's side effects. That leads me to believe it has a hormone effect. I always feel really good and full of energy when I am on it.

[viltsen]

Thank you, Nerdhume. This is a very helpful, and hopeful, post. I wish I could say I feel super energized on Uceris. I am a pretty high energy person generally and I am quite tired now, but I think that might be due to nutrition. I am still struggling to get adequate calories without setting off my system. I'm starting to feel more confident about the dietary adjustments I made recently so hopefully that does it!

[tex]

Hi,

Welcome to our Internet family. The reason why it's claimed that Uceris does not need to be tapered is because according to manufacturer trials, no budesonide from it is absorbed into the bloodstream. Other corticosteroids suppress adrenal function because of their ability to enter the bloodstream and therefore become available systemically.

But while it may be true that Uceris has no systemic effect on the adrenals, this viewpoint overlooks the fact that corticosteroids apparently work by suppressing the number of, and activation of mast cells in the gut. It actually does this, according to research, by enhancing the immune system benefits of vitamin D, so that vitamin D actually suppresses the inflammation. That appears to be the reason why corticosteroids deplete vitamin D reserves in the body. And because of that effect, when corticosteroids are withdrawn, mast cell numbers and activation rebound and typically over-respond, leading to a relapse of inflammation as the corticosteroid exits the body, if it is withdrawn too rapidly.

At least this is true for Entocort, and the experience of members here bears this out. We don't have enough user experiences yet to determine whether or not this will apply to Uceris, also. IOW, the safest policy is to taper the dose when withdrawing, but we still don't know if that's actually necessary.

And yes, IMO Uceris does have a hormonal effect. Here's how I described my opinion on this in a post to Theresa last fall:

Theresa,

I'm somewhat skeptical about that "no systemic effect" claim also, for precisely the reason that you mentioned (hormonal effect). If none of the active ingredient is absorbed into the bloodstream, how could it have a systemic hormonal effect? IMO, the quote below (from pages 56–57 of the vitamin D book identifies and describes the problem):

Vitamin D is actually a hormone.
In fact, the active form of vitamin D, 1,25(OH)2D3, is a steroid hormone, while the inactive form, 25(OH)D3, can be described as a precursor to a hormone. But before hormones can serve any useful purpose in the body, they must be able to relay their molecular information and instructions, and they do this by binding to specialized proteins called receptors. In humans (and in fact, in all vertebrates), there are five major categories of steroid hormone receptors. They are known as androgen receptors, estrogen receptors, glucocorticoid receptors, mineralocorticoid receptors, and progestin receptors.

Each type is specialized to match the needs of the hormones that it binds with. In the case of the glucocorticoid receptors, they contain nuclear receptors, and this is important to our discussion here, because the active form of vitamin D is a nuclear hormone. For anyone not familiar with this designation, no, a "nuclear" hormone is not radioactive. "Nuclear", in this case, simply refers to the fact that cells in this group are of a type that have a membrane-enclosed nucleus that contains most of their genetic material.

The unique characteristic of nuclear receptors that distinguishes them from other types of receptors is their ability to directly bind with DNA and modify gene expression. Nuclear receptors are able to sense and bind to certain hormones such as cortisol, thyroid, and vitamin D. These hormones act as ligands and activate the respective receptors. For biological purposes, a ligand is simply a substance (typically a small molecule) that binds with a biologically-active (meaning that it is produced by a living organism) molecule in order to form a complex that serves a biological purpose.

Since nuclear receptors have the ability to bind directly to DNA, this means that when they are properly activated, the receptors are able to regulate the expression of adjacent genes. In other words, when the presence of a specific type of hormone is detected, and binding occurs, this activates the receptor, and the corresponding gene is either up-regulated or down-regulated, according to the normal function of the hormone.

I've added the red emphasis of course.

OK, here's where it gets tricky: All cells contain DNA material, so this reaction (nuclear hormone receptor binding) can occur in the cells of the epithelia of the colon. But in order to have a systemic effect, hormones have to enter the bloodstream. So technically, the manufacturers of Uceris may well be correct (that the budesonide in Uceris does not enter the bloodstream), but the effects of the resulting glucocorticoid receptor binding do indeed result in a systemic event that apparently involves the circulation of hormones produced as a result of the glucocorticoid receptor binding. And as a side note, while most of the sex hormones have a relatively short half-life, estrogen has a relatively long half-life, which means that even a small amount in circulation can have a significant effect, because it lasts longer than most hormones in circulation.

At least it appears to me that this is what is happening with Uceris. I hope I haven't just confused the issue.

Tex

Your remaining symptoms are probably due to another food in your diet. Have you tried avoiding all traces of soy? Soy is the third most likely food sensitivity for us.

Again, welcome aboard, and please feel free to ask anything.

Tex

[viltsen]

Thanks, Tex. I had stumbled upon your post to Theresa last night, which informed my initial post.

I don't claim to understand it perfectly but I do now understand what you said above about Vitamin D and mast cells, and plan to do some more research on that topic. I have been taking Vitamin D for several years now (living in gray Portland) but I'm thinking of upping my dosage.

In terms of soy, you may be right. I have been completely off soy for the last 10 days but was eating small quantities prior to that. Interestingly, yesterday was the first day that I am 100% sure I was FODMAP compliant and today is my best day in several weeks.

I read in another post, by you, I believe, that many people in the forum have trouble with fruit while they are healing. I suspect this is the case for me.