GI doc trying me on Entocort and have some questions

[dogmom]

Only thing that has ever worked. Took it for 4 days last summer and MC was over for 9 months. Came back with a vengeance, including severe dehydration requiring IV in ER. After 2 weeks, am back to normal. Doc said needed to take for 30 days. Ran out of samples after 2 weeks and cannot afford the $600+ co-pay. Saw here where I could order it for $15.00 for 10 day supply. Am now in remission again but do not know how long it will last but at least I know where I can find affordable medication.

[tex]

Hi,

Welcome to the board. Yes, the drug companies and insurance companies are really greedy in this country Many members here find it necessary to order budesonide in order to be able to afford to use it to treat their MC. There is a shipping charge of course, so most people order a 3-month supply each time they order, in order to save on shipping costs.

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

Tex

[CathyMe.]

Great news Brooke! So glad that you found a dose that works for you! As I've said many times before Entocort was a lifesaver for me.

[dogmom]

I am 78 and my symptoms started almost 3 years ago. Last June and July I was in a horrible stage and my G.I. gave me Entocort which I took for 4 days and my symptoms disappeared and the disease remained dormant for 9 months. It came back with a vengeance recently and again I was on Entocort for 14 days and my symptoms resolved. Since I cannot afford to have the prescription filled, your information about the all pharmacy website has given me a huge sigh of relief. I now know I can get the medication at a reasonable rate the next time I need it. This is, after all, a lifetime disease that will never go away.

[dogmom]

In January I had a horrible case of thrush. I am continuing to have trouble keeping it under control and take probiotics and rinse with baking soda and water. I am now wondering if this isn't associated with the MC which recurred in April. My G.I. never said a word to me about diet. What kind of diet and where can I find recipes. I know about gluten free and dairy free but that would be very difficult for me. I use South Beach diet since my husband lost over 80 pounds on that diet and has kept it off because I learned to cook all over again. We have limited income so these high priced foods are just about out of the question.

I am open to any suggestions.

[tex]

The thrush is a sign that you might have a yeast overgrowth in your digestive system. It's a somewhat common problem with MC, and I had thrush back when I was still reacting.

Many of us here control out symptoms by diet alone. Most of us have to avoid gluten and dairy, and many of us have to also avoid soy. Some have to also avoid eggs, and some also have other food sensitivities. We are all different, but we all work out a treatment plan that works for us.

Most GI specialists insist that diet has nothing to do with MC, but that's like saying that breathing polluted air has nothing to do with asthma, COPD, black lung disease, or lung cancer. Obviously that's not correct. When we eat something that our digestive system cannot tolerate, it tells us that something is wrong, by all the symptoms we develop. If we stop eating the problem foods, the symptoms go away, and our digestive system slowly heals. For some strange reason, most GI docs don't understand that.

One of our members is a professional chef, and she has developed hundreds of delicious recipes that are free of gluten, dairy, and soy. And she also lists ways to make substitutions for eggs, for those members who are sensitive to eggs. Many other members here have also added good recipes. You can find the recipes at the link below:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

There are also many other good sources of recipes that are free of problem ingredients that can be found by searching the internet. Many paleo recipes are safe for us, for example. And by avoiding expensive processed foods, and cooking your own food from scratch, it's much easier to avoid the problem ingredients, and cut down the cost, at the same time.

Tex

[brookevale]

Well it's May 16 and I've been on Entocort for a little over three weeks. Normans to the point I am now constipated. I am sad there has been no weight gain. I am trying to be hopeful and stick to "the diet" but as always am struggling. I hit rock bottom and have been sticking to the diet to a tee for four days. One thing I've realized is that what I thought was a complete decaf coffee intolerance I now believe is more the almond milks I have been using in it. One has carrageenan. The other, guar gum. I am trying plain, pure coconut milk but it curdles. Anyhow, still dealing with severe yeast infection-like symptoms for two and a half months now. The internal itching and pain is intolerable. I test negative for every culture--yeast, bacteria, and STDs. The only thing I test positive for is copious amounts of white blood cells in culture--a sign of inflammation or infection. I am going to see a specialist in Boston on June 19 about it as none of these doctors here can figure it out! I do have something called pelvic congestion syndrome, and am having a procedure next week. But, both the doctor and I both believe my insane itching isn't related to that. I'm on antihistamines and nothing helps it.

[tex]

Brooke,

I assume that your doctors have checked your liver enzymes and they are normal. Correct?

Tex

[Chrisdat]

Entocort for me does not cause anxiety attacks, or panic attacks, but it does "ramp me up". I used to love my quiet mornings before everyone was up. I read, prayed, caught up on the newspapers and just loved the quiet hours.

Now I get up, take Entocort, have a cup of coffee and sit down. Within an hour, I'm up cleaning the house, brushing the dog, folding laundry, reorganizing the freezer, etc. my husband loves it:)

But honestly, it's a side effect, but tolerable. I just need to learn to take time in late afternoon to work in the reading, praying and enjoying a quiet cup of tea.

[brookevale]

I have had the liver function tests which are ok. Although, I don't "feel" like my liver is ok. I no longer have side effects from the entocort thank God. I have had normans but am still losing weight (down to 105 lbs this morning from 135 lbs in December). I am eating next to nothing--meat and some vegetables. Scared about continuing to lose weight so rapidly and don't want to end up on a feeding tube.

[tex]

Eating "next to nothing" is guaranteed to cause weight loss. We have to eat more than a starvation diet in order to maintain or gain weight.

Tex

[Pat]

Brookevale,

Eat more meat and vegetables. More servings. Lots of it. Track your calories and eat enough so that you won't lose any more weight! Forget about portion control. Eat!

Pat

[CathyMe.]

I agree with Pat and Tex. You need to eat more protein and veggies and try some different fats, like coconut oil!

[Zizzle]

Brookevale,
I too have been losing weight, but not an an alarming rate, due to my limited diet (10 lbs in 8 months). If you can tolerate it, you should add as much coconut oil or olive as you can to your meats and vegetables. Try eating coconut oil by the spoonful - it has the added benefit of killing yeast and other microorganisms. Can you tolerate avocados? They are loaded with healthy fat too. I was grain free but had to add rice back in to increase my carbs and to help keep me hungry!

[brookevale]

I am doing better with eating. Organic turkey bacon, chicken, turkey, bison, fish, shrimp, clams (to get iron), duck, overcooked vegetables and Beech Nut organic veggies stage 3, ghee, rice cakes. I actually gained a pound this week. Hoping it continues in a positive direction. I just posted on another of my threads I'm trying to incorporate NOW MCT oil and hope I can tolerate it. Every other oil makes me sicker and lose weight. I am also going to see a holistic nutritionist next week.