Poll About Entocort

Post by **tex** » Thu Sep 10, 2015 11:19 am

Hi All,

Someone has suggested that it would be interesting/helpful to see how many of us have used Entocort in our recovery program, and how we used it.

So I've composed a poll that will hopefully provide some useful information in the long run. The choices may not be an exact fit for everyone, but please try to select the choice that most closely fits your experience.

Thank you for your help.

Tex

brandy · Post by **brandy** » Thu Sep 10, 2015 12:00 pm

I used it for 4.5 months after initial diagnosis with long slow taper at end at recommendation of this board. The entocort worked/helped. I can't go on it again as I had too many side effects so it is important for me to stay GF. I should note that most people don't seem to have the side effects that I had. I've been off drugs for 3.5 years and stay in remission with diet. Tex, I think this is a good poll as Entocort/Uceris is so heavily prescribed for MC. I think this poll will be helpful for newbies.

Post by **tex** » Thu Sep 10, 2015 12:36 pm

Brandy,

Thank you for the extra details and for sharing your insight. Details and insight are always helpful because it's tough to offer poll choices that cover every possible situation.

Tex

Lilja · Post by **Lilja** » Thu Sep 10, 2015 2:51 pm

Hi,

I have used Entocort twice. The first time for 4 months, but it didn't help, probably because I was not aware of the importance of a slow taper.

The second time I used it for 12 months, of which 6 months were a taper off. Now, it is 3 months since I stopped Entocort completely, and I think I'm in remission.

I ticked option no 4.

T · Post by T » Fri Sep 11, 2015 9:38 am

I used it once for 4 months it did not mask any food intolerance and I could not get 3 days in A row that I didn't feel sick the only thing that
worked was eliminating the poison foods.

Sheila · Post by **Sheila** » Tue Sep 15, 2015 8:01 am

I took Entocort for almost 2 years, the last 6 months tapering off slowly. I was also GF, DF, DF and Ef for that entire time. I'm in remission and still maintain a modified Paleo diet.

sonja · Post by **sonja** » Tue Sep 15, 2015 11:46 am

Hi all,

I used entocort a long time. First intermittent, the last time more than 2 1/2 years in a row (mostly 3 a day).
It worked less and less and I could stop in december 2014, a month after I went gf.
I liked to take it, but my resistance was very low en I was constantly sick (flu, otitis, etc.); 2 winters from september until june.....
Since I stopped: the flu's stopped also!
But I'm getting more and more joint pains and osteoarthritis. That's why I'm thinking about taking a low dose, like some members do. I would like to know more about this option.

I thought that my low resistance was a side-effect of entocort, but maybe it was a side-effect of my LC.......does anyone know?
Now I'm gluten, casein and soyfree and in remission.

Sonja

Post by **tex** » Tue Sep 15, 2015 5:50 pm

Sonja,

Entocort definitely lowers the ability of our immune system to fight colds and flu.

I had a problem with osteoarthritis returning a few years ago, and I found that my diet was being cross-contaminated with gluten. I was also eating dairy products at the time, and an EnteroLab test showed that I was producing antibodies to dairy, so I cleaned up my diet, and stopped eating dairy products, and the joint pains and osteoarthritis all went away again, and they have not returned.

Tex

sonja · Post by **sonja** » Wed Sep 16, 2015 5:03 am

Hi Tex,

Thanks for your answer. I really hope that I will succeed without entocort.
I discovered yesterday that my female hormons (oestradiol/dydrogesteron) contain lactose.
They are so small........Maybe time to stop, but I know that they help a lot of women to get rid of their osteoarthritis.
Now I write this down, I realize that it is a good idea to stop and see what happens.
On the other hand, I'm now 3 weeks without goat cheese. You told me that it would take me 6 to 8 weeks to know if this really helps. My husband tells me: one thing at the time.
Another question for all: do you drink wine? I fear that this is problematic to for me.

Sonja

Sheila · Post by **Sheila** » Wed Sep 16, 2015 10:54 am

Sonja, We give up so many things when we first get sick, all of the comfort food and drink of a lifetime. I did take Entocort for almost 2 years and the drug does mask symptoms. I discontinued Entocort and I consider myself to be in remission. That being said, I enjoy a glass of wine every night and have done so for the past 4 years. It exacerbates my Rosacea and I am living with that consequence. My diet is so restricted, it is necessary to find a few pleasurable things that make the boring diet acceptable. I added one cup of coffee and don't have a problem with it most days. Take it slow adding in anything new.

Sheila W

Post by **tex** » Wed Sep 16, 2015 11:20 am

Sonja,

As Sheila discussed, some of us can handle wine and others have problems with it. The problem is usually caused by the sulfites in wines. Some people can drink wine if they locate a good low-sulfite wine. I can't drink it because of a genetic defect that causes me to develop a headache almost as soon as I begin to drink it.

Many members here have found that hormones affect their MC, and because of that, using contraceptives or hormone replacement treatments can trigger D for them, or prevent them from reaching remission. Even the HRT patches cause problems for some women who have MC.

Tex

sonja · Post by **sonja** » Wed Sep 16, 2015 12:36 pm

Hi Sheila and Tex,

Thank you for your answers. Good news for me!
Sheila, its the same for me what the wine concerns. I was really so glad that I could drink white wine, as I was used to do, until now almost daily one or two glasses. I agree with you that it makes the diet more easy to follow. I understand that you take the rosacea; I would do the same, but I want to get rid of al these joints pains and inflammations.

Tex, good to hear that sulfite is perhaps the reason, because it must be easy to find wine without or with a little sulfite. We have here a lot of wineshops and biological shops. Biological wine have less sulfite.
A problem is maybe that most bottles (maybe all) only says that there is sulfite, but not how much.
I'm sorry for you that you can't drink wine! I hope that there is something with alcohol you can tolerate!

I'm going away for 4 days and after that I think I stop the hormons. Just look what happens!

Sonja

louis · Post by **louis** » Wed Sep 16, 2015 1:37 pm

tried entocort in the past and it did nothing at all.

I would be more interested in a poll about LDN, if thats possible?
There seem to be quite a few people here that use it, im curious how many tried it and sticked with it or stopped.

Sheila · Post by **Sheila** » Wed Sep 16, 2015 3:28 pm

I did well on Entocort for MC and am in remission.

I started taking LDN 3 1/2 weeks ago for my other autoimmune issues and it is already making a difference. I'm less exhausted and, surprisingly, my hay fever type allergies are much better. I didn't expect that to happen. I'm hoping it will alleviate Sjogrens worst symptoms and I understand that could take a while. I know Monique got excellent relief of MC symptoms using LDN and I'm not sure about anyone else. It is often helpful for Crohns patients so it might be beneficial for MC. I don't know enough about it to express a well informed opinion.

Sheila W

Post by **tex** » Wed Sep 16, 2015 4:51 pm

Sonja,

All wine contains sulfites naturally as by-products of the fermentation process. But some wines have sulfites added as a preservative. Those are the ones to avoid. The ones to look for usually say something like "no added sulfiutes" on the label.

White wines naturally contain less sulfites than red wines, in most cases.

Tex

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