Round 2 of Entocort - seeking advice

[ozgal]

Hi all

Brief recap:
I was diagnosed with LC in March 2013. My GI prescribed Entocort 9mg for 4 weeks, 6mg for 2 weeks and 3mg for 2 weeks. I also adopted a SCD diet and omitted NSAIDs at the same time and was doing well (had daily normal colored Normans and no pain). However, 9 weeks after my last dose of Entocort, I relapsed.

So I'm back on round 2 of Entocort - this time cutting out dairy, soy, eggs etc. I started out an elimination diet of white rice/chicken cooked in coconut oil/ripe bananas/coconut water/peppermint tea/lemongrass and ginger tea. I eliminated bananas after week 2 of the diet as I noticed I was getting sore stomachs within 10 minutes of eating them. I've just recently introduced well boiled, peeled carrots and pumpkin which hasn't adversely changed my BMs. I'm also taking zinc, sublingual B12 and D3 supplements (thanks Gabes for your thoughts on this).

I've been on Entocort for 5 weeks at 9mg and although my BMs have dropped to 1 per day and the incontinence issues have gone (yay!), my stool is still light brown/yellowish and like sludge. My urination is still frequent and I have general fatigue with leg/foot cramps and occasional abdominal pain.

Reading other posts on the forum, I understand the 2nd round of Entocort is not as effective as the first time round. I also understand from Leah & others that I need to stay on Entocort until I start getting constipated.

However I'm a bit concerned about my progress as it's been 5 weeks now on full dosage and I'm not at constant constipation level (although I did have a 3 day period without a motion last week). I also never had light brown/yellowish colored stool on the first round of treatment. Is this something to be concerned about? Do you think there's something in my currently limited diet that's still causing inflammation?

Should I talk to my GI about continuing the full dosage for another month before dropping down to 6mg?

Any advice welcome.

best
Helen

[tex]

Hi Helen,

The light-colored stools could be a result of your diet changes, but it can also indicate faster than normal transit time. The biggest problem with the SCD is that it allows dairy products, and most of us are sensitive to casein, which is in all dairy products, as you are probably aware, so you are on the right track by upgrading your diet.

Your continuing symptoms are almost surely a sign that you are indeed reacting to something in your diet, just as you suspect. Some of us are sensitive to chicken. In case that might happen to be the problem, if I were in that situation I would try substituting turkey or lamb for a week to see if that makes a difference.

Because of or diets, many of us need to take a magnesium supplement, in order to prevent leg/foot cramps. Cramps can also be caused by deficiencies of calcium or potassium, but magnesium is the most likely suspect. Be careful with magnesium supplements though, because magnesium becomes a laxative at larger doses. The RDA for women is 320 mg, and it's 400 for men. I can eliminate my leg/foot cramps by taking 400 mg of magnesium citrate daily, but magnesium citrate is a pretty good laxative for some of us. Magnesium glycinate is the form that's the least likely to cause D, but it doesn't seem to be as effective as magnesium citrate, because I have to take 800 mg of it daily in order to get the same effect as 400 mg of magnesium citrate. We are all different though, and most of us require less magnesium supplementation in order to control our leg/foot cramps. Magnesium solutions can also be absorbed through the skin, and some members use sprays or lotions. It's even possible to absorb magnesium by adding Epsom salts to bathwater and soaking for 10 or 15 minutes.

In our experience, it does little good to lower the dose of budesonide before normally formed bowel movements have been the rule for at least a week or more. Using C as an indicator of when to lower the dose seems to work extremely well, because it removes all the guesswork from the process.

Looking at some of the foods that cause problems (such as bananas), it's possible that you may be having problems with excess histamine in your system. Chicken (and other foods) can also cause histamine issues if it is stored in the refrigerator for a day or so.

This is a mast cell issue, and many of us have to deal with it, some only temporarily, and some of us have to minimize foods that contain high levels of histamines, and foods that trigger the release of histamines, at all times, in order to achieve remission. You can read more about mast cell issues here.

I hope that some of this is helpful.

Tex

[ozgal]

Hi Tex

Yes, your reply has helped.

I will exchange chicken for turkey or lamb and see how I go.

Thanks for the info on magnesium. I definitely think I need this as my foot/leg cramps are becoming more frequent and bothersome. I was researching magnesium supplements last night and found a magnesium oil that you spray on your skin that sounds promising. It’s magnesium chloride. Does it make much difference if it’s citrate/glycinate/chloride or does this just signify the format they are in i.e. liquid, powder etc?

I’ve also noticed that I’m more wheezy lately (I have asthma). Do you think this is tied in with the mast cell issue?

Thanks again!

Helen

[tex]

Helen,

Here's some information on how the various types of magnesium supplements compare.

http://www.globalhealingcenter.com/natu ... magnesium/

Yes, I believe that asthma can definitely be affected by mast cell issues. Here's a link to an article that discusses that issue.

http://www.aacijournal.com/content/pdf/ ... 4-2-84.pdf

You're very welcome,
Tex