Off Entecort for a week

[ant]

Hi all

Thought I should report in. After tapering down to one Entocort every other day for about two months I took the plunge a week ago and have come off the drug completely.

I initially had two or three days of bloating, but not D and mainly firm BMs. Currently no flare or bloating and four days of firm/firmish BMs. I will see what the next few weeks bring......

Since tapering down (and now off) entocort I have noticed slight stiffness /numbness in my fingers and knees in the mornings. Not sure what that signifies?

Also I have noticed that my skin has become a bit more translucent (over many months - not suddenly). I can see blue veins more in my feet, chest and arms - not such a pretty sight!! Again not sure what that signifies, except that collagen and fat is not getting there enough. (I have not lost weight in the last year, although I did in the first six months or so of MC - from overweight to about "right" for my height)

Anyway all in all I hope I have reached a significant milestone in the road to remission. All best ant

[tex]

Ant,

The symptoms that you describe, are almost certainly the effects of your adrenal system reprogramming itself as it tries to relearn how to regulate the production of cortisol, in response to stress. Cortisol induces collagen loss in the skin at a much greater rate than in any other tissue, so that's why the effect is so apparent there. In laboratory rats, for example, cortisol-induced collagen loss in the skin is ten times greater than any other tissue.

I hope the transition continues to go smoothly.

Tex

[Gabes-Apg]

Ant
great news that so far so good with the change. Well done for being brave to transition to reduced meds

i agree with tex- it is those adrenals........ i am only just realising what an influence and impact they have had or can have.

as a very wise and amazing person told me softly softly catch the monkey.....



take care

[Joefnh]

That's great news Ant! I am looking forward to the day I can stop...

I hope the skin issues resolve soon.

--Joe

[Gloria]

Congratulations, Ant! I'm keeping my that you'll continue to maintain remission without Entocort. You've taken it very slowly and your body should be quite adjusted. I also noticed that my knuckles had more stiffness when I was off Entocort. 'Twas a small price to pay for the thrill of being off of it.

Tex, your knowledge always amazes me. I never connected the obvious translucence of my skin with using Entocort. I've always had visible veins in my hands, but now they're becoming more apparent in other parts, such as my neck, chest, etc. It's probably due to being so thin right now, also. I can fold the skin on my hand and the two layers are only about 1/16 of an inch. All the veins would be visible with that little of a fat layer.

Gloria

[tex]

Gloria,

Actually, I never gave it much thought, until Ant mentioned his symptoms, because dermal thinning, (actually it's usually referred to as skin atrophy), is never mentioned as a side effect for oral cortocosteroids, (at least I don't recall ever seeing it mentioned). It's been a well known side effect of topical corticosteroids for many years, though.

Skin Atrophy
Repeated use of topical steroids in the same area can cause thinning of the epidermis and changes in the connective tissue of the dermis. The skin becomes lax, wrinkled, and shiny. Affected areas can be depressed below the level of normal skin with visible telangiectasias, hypopigmentation, and prominence of underlying veins. In most cases the atrophy is reversible once topical steroid use is stopped, but it may take months for the skin to “thicken” back up.

http://dermatology.about.com/cs/medicat ... ffects.htm

According to research, decreased collagen synthesis seems to be the primary cause of the problem.

http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract

For all I know, budesonide may be more prone to this effect than the other cortocosteroids, because the tendency of inhaled budesonide to cause the problem has been well documented. This side effect was documented in adults about 15 years ago, and it was recently investigated in children:

http://www.ncbi.nlm.nih.gov/pubmed/19858777

And yet, no one mentions the effect connected with oral delivery. This may turn out to be one of the most potent systemic effects connected with budesonide.

Tex

[JoAnn]

Hooray for you Ant, I'm glad you've been able to take the plunge and things are going well. I'm still doing well 2 months off, but do use immodium from time to time if things don't feel quite right. I'd rather catch it early than regress. Wow, I didn't know about the skin thing, just thought it was part of aging. Here's to your continued success and healing, JoAnn

[barbaranoela]

Ant and continued success coming from me 2~~~~~

Dont U just wanna hug that word---remission~~~~

luve Barbara

[Gloria]

I'm still doing well 2 months off, but do use immodium from time to time if things don't feel quite right. I'd rather catch it early than regress.

I have a question about using Imodium. I've always been reluctant to use it, and have only taken it as a last resort, usually when I'm going to be at an event when I can't easily dash to a bathroom. For some reason, it bothers me more to take Imodium than Entocort. Imodium works very well for me, but I've read that sometimes it takes a larger dose after continued usage. Just one pill will usually relieve my symptoms for a couple of days (while I'm on Entocort). It makes me feel a little "bound up" and I guess that's what bothers me. In three years of MC, I have only used half of a container of Imodium.

Those who use Imodium or other similar drugs have implied that they halt the progression of symptoms. I've always thought that it just stops them temporarily and once off it, the progression will continue. Like Entocort, it doesn't cure anything, but suppresses the symptoms. Is it more likely that the usage buys time to work on changing the diet to correct the problem?

DH thinks I should get off Entocort and just use Imodium. I'm sorry to report that Entocort is no longer working for me. I'm on 9 mg./day and I'm still having problems in spite of being on an extremely limited diet.

Gloria

[ant]

Dear Tex and Gabes

Thanks for the explanation on cortisol. It makes a lot of sense.

Perhaps thinning skin is only 'significant' after taking Entocort for a long period (as I have done) and that is why it is not listed as a side affect. In the interests of accuracy, I need to say that I did have some visible veins for many years on the left and right of my upper chest (enough for my Doctor to remark on few years ago). However, in the last few months the symptoms increased there and are now also on my arms and feet. Also I have noticed thinning skin on the hand (as Gloria describes).

In laboratory rats, for example, cortisol-induced collagen loss in the skin is ten times greater than any other tissue.

Hmmmm At least I am not a lab rat!

Now the question is what can I eat/take to get the collegian back (and will whatever that is also help osteoporosis issues)?

Dear Joann

Here is to your continued success.
I think we both know that the MC monkey can pop his head up at any moment so and lets hope this does not happen

Dear Gloria

I am so sorry that you are back in a long flare and nothing seems to work at the moment. While I by no means consider myself out of the woods yet, it seems that I needed to find some 'odd' intolerances to start on the road leading to the stage I am at now (for me that was nightshades - tomatoes and potatoes). Also, it may be co-incidence but I have continued to take Boswellia (usually 2 400mg a day) for the last 6 months.

On your question about Imodium, IMHO trying to stop a flare from developing by hitting it with something as soon as possible makes sense. I assume that a flare causes damage and thus sets off a vicious circle of a less healed gut being more prone to another flare up, etc. etc. In other words anything that might calm the inflammation helps, even if it does not cure the underlying causes of MC. (FYI, because I am lucky enough to tolerate pepto bismol, I use this to hit a developing flare with Imodium as another line of defense.) I may have this thinking all wrong so someone please correct me if that is the case.

All best, Ant

[JoAnn]

Hi Gloria, Immodium has worked very well for me. Like Ant, I've used Pepto-B and Immodium on and off entocort. I usually use Pepto when I have some stomach pain and the immodium if things feel looser than they should. Before I went on Entocort, I would take 2 immodium before I went to bed and I actually had very good results with it. You might experiment with that and adjust the dosage if it seems like too much and see what happens. The immodium does seem to calm my bowel and helps me feel "normal". I hope this gives you some help. JoAnn

Ant, I've got my fingers crossed for both of us and hopefully we'll stay on that bike. I'm not going to celebrate until I've been off for 6 months (and hopefully you, too) and then we can

[Linda in BC]

Ant and Gloria:

I have had blue veins visible and very thin skin on the back of my hands for most of my adult life, just like my mother had , and I have noticed as I age it is increasing. I just did the skin pinching that you described, Gloria, (have never done that before) and the two layers are less than 1/16th of an inch! (About the thicknes of piece of thick cardstock) My point in telling you this is that I have never taken entocort or any steroid, so to me Tex's explanaion of lack of collagen due to stress (via cortisol and the adrenals) makes more sense to me. I am beginning to suspect I have cortsol/adrenal issues, and have had for a long while.

Ant, so glad to hear so far so good!

Linda

[Polly]

What exciting news, Ant!

Am keeping fingers and toes crossed for your continued success.



Love,

Polly

[tex]

Ant,

The effect is not limited to long-term use. Note the comment from the research report at the following link:

Thus, even a low dose of inhaled corticosteroid represses skin collagen synthesis within a relatively short period.

http://www.ncbi.nlm.nih.gov/pubmed/8630563

Now the question is what can I eat/take to get the collegian back (and will whatever that is also help osteoporosis issues)?

Be sure that you are not magnesium deficient, because a magnesium deficiency tends to suppress collagen synthesis. The common blood test that doctors use to check for magnesium deficiency is pretty much worthless for determining a magnesium deficiency, (as long as any magnesium remains in your body, it will show your blood levels to be "normal", regardless of how low your tissue magnesium levels might be). The best way to handle it is to calculate your daily magnesium intake, and make sure that it is adequate.

The foods recommended in the article at the following link will supposedly enhance collagen production, but I have no idea whether they will help an osteoporosis issue. Obviously, you'll need to bypass the recommendations on beans, legumes, tofu, and soy.

http://www.locateadoc.com/articles/top- ... -1905.html

By the way, I agree with your advice to Gloria - in general, diarrhea tends to cause more diarrhea, and chronic diarrhea can lead to the inflammation pattern described as microscopic colitis.

Tex

[tex]

Linda,

Good point - budesonide is not the only culprit in the thin skin issue. The hypothalamic-pituitary-thyroid axis, (HPT axis), is a very complex regulatory combination.

Tex