entocort treatment

[jmiller39]

Hello everyone,

I was dx a little over a month ago and finally had my appt. with my GI doctor the other day, he prescribed entocort for me. Can anyone tell me if they have had any bad experiences with this medicine? I am a little nervous about taking a steroid! Have heard to many horror stories about facial hair growth, weight gain, etc.

Also has anyone else ordered this from Candadrugs.com? I have no insurance and my doc recommended I get the medication from there?

Please please give me some sound advice for this medicine! Are there any other treatment options?

Thanks everyone.

Jolene

[Gloria]

I have been taking various dosages of Entocort for 3 3/4 years. I haven't had any negative side effects that I'm aware of. I also was initially very reluctant to take a steroid and held the prescription a month before I filled it. It took 3-4 weeks for it to take effect and reduce my MC symptoms; others have seen results in less time. I credit Entocort with giving me my life back.

There are a few others on the board who have been on Entocort for longer than me. I don't think they've had any side effects, either.

That's not to say that no one has them. Some here have had dizziness and other problems and had to discontinue the medication. You should know pretty quickly if you'll have problems using it.

Several board members have ordered Entocort from Canadadrugs.com. It is much cheaper than it is in the U.S.

The other treatment option is to manage your MC through diet. Many here have successfully done so. Even if you take Entocort, it will not "cure" your MC. It will manage the symptoms, but as soon as you stop taking it, your symptoms will return. All of us who are on Entocort also change our diet so that once we stop taking Entocort, the diet will continue to keep us in remission. Most of us have to give up gluten and dairy. About half of us also are intolerant to soy. Several of us, including myself, are intolerant to many more foods. Hopefully you will be one of the fortunate ones who only needs to give up gluten.

Keep reading here and you'll learn more than your doctor will ever tell you about MC.

Gloria

[tex]

Hi Jolene,

Because of the fact that it does not become activated until it reaches the lower third of the small intestine and the colon, only about 10 to 15 % of the active ingredient in Entocort EC, (budesonide), is absorbed into the bloodstream. That means that the risk of adverse side effects is much lower than for most other corticosteroids. As Gloria pointed out, our combined experience here bears that out.

Quite a few members order their Entocort, (actually, a generic form of budesonide, called Budez CR), from an online pharmacy located in Cypress. To give you a price comparison, the cost of a 90 day supply, (270 capsules), is $121.50, plus shipping. It usually takes about 3 weeks to receive an order, but the biggest holdup is in Customs, so deliveries from Canada may not be much faster. From Canada, though, you can buy the branded product, (Entocort EC), if you prefer, (if you don't trust the generic). Of course, the branded product is much more expensive, even in Canada. Most Canadian pharmacies require a prescription, (even though prescriptions written by U. S. doctors are only valid inside the borders of the U. S.), whereas most overseas online pharmacies do not require a prescription for ordering. The members who are using the Budez CR have found that for them, at least, it seems to be just as effective as the high-priced stuff.

http://www.alldaychemist.com/1283_Entocort-EC

The other treatment options include mesalamine-based anti-inflammatories, (which are usually much slower to bring relief than Entocort), and powerful immune system suppressants. Of course, the safest, and usually the most effective treatment for MC, in the long run, as Gloria has already pointed out, is diet control.

Tex

[fudette]

Hi! I just started entocort almost 3 weeks ago and so far I'm not having any side effects. I'm actually starting to feel better, too; although that may be in part because I have also started a GF diet.

I could definitely understand your trepidation about starting a steroid. My mother was on prednisone for years and she had some serious side effects. I really did not want to take it either but after researching it on line and getting some great information here I decided I would fill my prescription.

Laura

[nancyl]

Jolene,
I started taking Entocort one week ago. I just had to take something so the healing process could begin. I am DF and waiting for my Enterolab tests so I will know what else I may have to eliminate. I am hoping that staying away from the wrong foods will turn this around so I can get off of the drugs. My doctor only gave me a six weeks supply and then we will take it from there. I don't seem to be suffering from any side effects.

Good luck with your decision on whether to take it or not.

Nancy

[patc73]

Jolene, you asked the exact question I was going to post! I, too, was diagnosed three weeks ago, and have been feeling better each day that I'm GF and DF. Today I actually saw a real gastroenterologist (I was diagnosed with biopsies from a colonoscopy done by another doctor). I'm upset, so I needed input from by MC Forum new friends! You guys are a wealth of knowledge, and I trust you since you're in my situation. I was given a prescription for Entocort, also, but when I went to my pharmacy it was going to cost over $1300 for just one month's supply. I can't afford it! The pharmacist asked the doctor's office to let me know if there was anything else I could take instead. I'm already on Questran and it has brought me back to a semblance of normal. I also am scheduled for an endoscopy to determine if I'm in fact gluten-intolerant, but in order for it to be accurate, the doctor wants me back on gluten. (He seemed very cavalier about whether I even need to be GF!) The thing is, after nineteen days of no gluten, I'm less bloated every day, and the D is gone for now. Help! What do I do? Keep up the GF diet? Or go off it for three months and feel lousy in order to find out if I've got celiac? Maybe I should order the Budez CR. Does the Cypress pharmacy need an Rx? Thanks in advance to all of you!

[ant]

Dear Pat,

I order the generic from alldaychemist. Much cheaper if you can get it and I do not use a prescription.

I totally understand the dilemma of having an endoscopy and doing a gluten challenge to "prove" your are officially celiac. I refused to do this because:

a) Enterolabs already showed I was gluten intolerant
b) My gut reacted badly to reintroducing gluten for a week prior to my stool sample collection
c) there is high correlation between MC and Celiacs in published statistics
d) I have Dx osteoporosis (also strongly related to celiac/gluten intolerance)
e) the clinic evidence from so many members of this board

So, IMHO, I would not do a gluten challenge if you already feel being GF helps,

Best, ant

[sarkin]

Pat,

I must agree with Ant - the idea of challenging gluten because your doc only knows insensitive, outdated tests seems a little like blaming the poor patient for getting better. I don't think you deserve the punishment.

The Enterolab base testing would cost a lot less than the Entocort Rx (yikes!!! I hope you can find a cheaper route to remission, with or without it - it does help many people, and also many of us have been lucky enough to find a non-Rx path to healing). You can read about it on this site (there's a whole section with test results of many members), and there's a lot of info at enterolab.com.

MANY people have gluten problems who don't show it on the blood and endoscopy tests your doctor seems to have in mind. That's why so many celiac patients go years undiagnosed, with worsening symptoms and increased autoimmune risk (12 years to diagnosis is one statistic I read). I was GF for 3 months before I ordered my Enterolab tests, and my anti-gliadin antibodies were 103 (under 10 is normal) - so they can detect elevated immune response a lot longer than 19 days after you remove the troublemaker from your menu. Their tests show up to a year, maybe as long as 2. For other potential problems (dairy/casein, soy), the window is shorter - though my casein antibodies were still elevated about 3 months after my last dairy product.

I think your 'scientific method' is way ahead of the medical profession - you cut out the gluten and got relief. That used to be the standard of proof for celiac disease. And now it's known (well, not by all GI docs) that you don't have to have celiac to have serious, debilitating, autoimmune problems with gluten.

I went GF without blood/biopsy proof I needed to. About a month in, I thought - am I sure this is my problem? So I ate about half of a small flour tortilla with a take-out meal we ordered. I was in bed for the better part of a week, except when I was on the toilet, and nothing helped. I would recommend just imagining that you did that, and skipping the actual "gluten challenge" part. I wouldn't wish it on anyone.

Your doctor is cavalier because he's not going to live with the consequences. You can get certainty about this without torturing yourself.

(Sorry - a friend of mine told me to go back on gluten for 'valid' testing, just when I was starting to feel better, and I hope I'm not screeching as loudly now as I did then!)

GREAT NEWS that you're feeling better, 19 days into this experiment!!! Good for you - that really is reason for optimism. Give yourself a pat on the back - it sounds as though you're on the right track...

Keep us posted,

Sara

[tex]

Pat,

I agree with Ant and Sara. Most doctors think that a gluten challenge is no big deal to someone who is gluten sensitive. It's a shame that they can't experience the pleasure of being in our situation for a month or so. They would change their opinion long before the "tryout" ended. They should be ashamed for even suggesting such a cruel test procedure. If they can't dream up a better way to diagnose celiac disease, they should hang it up, and turn the job over to someone who knows what she or he is doing.

I'm not a doctor, but IMO, unless for some reason or other, you just feel as if you have to have an official diagnosis of celiac disease, there's little point to pursuing a diagnosis. If you already have an MC diagnosis, and if you treat your MC symptoms by diet, that will take care of the celiac issues, automatically. The MC diet is inclusive of, and much more restrictive than the celiac diet. If you feel that you have to have a celiac diagnosis in order to adhere to the GF diet, then by all means, you should try to get a diagnosis, because if you are indeed gluten-sensitive, and you fail to eliminate gluten from your diet, then you will be accumulating damage to your intestines, and you will have the increased risk of lymphoma that untreated celiacs are faced with.

As long as you have the self-discipline to totally avoid gluten, (without a celiac diagnosis), then I see little point in doing a gluten challenge. I'm pretty sure that I'm a celiac, but I never was tested for it, and once I reached remission, I wasn't interested in doing a challenge, so I'll never know for sure. I wasn't even aware of Enterolab before I adopted the diet, so when I finally got around to ordering some Enterolab tests done, I didn't bother to have them test for anti-gliadin antibiodies, nor for tissue transglutaminase anti-bodies, because I had already been on the diet for over 3 years. Based on my genes, though, (I have a celiac gene), and the fact that my fecal fat score still showed a slight amount of damage, Dr. Fine advised me that I am gluten-sensitive, so I will always remain on the GF diet.

The patent on Entocort expired about the middle of May, but it remains to be seen how long it will take before someone brings a generic version to market in this country, and even when they do, you can bet that it will be a lot more expensive than the Budez. In the meantime, as far as I can tell, Budez is by far the best option for anyone who doesn't have insurance. In fact, the price of Budez is lower than the copay for Entocort in this country, for many/most insurance companies. And, as Ant mentioned, no prescription is needed, (actually, prescriptions written by U. S. doctors are worthless outside the borders of this country, but for some strange reason, Canadian online pharmacies require them anyway).

Everyone has to make her or his own decision on whether or not to pursue a celiac diagnosis, (which is especially tough if a gluten challenge is required), but really, it's a moot point, in the real world, for most of us. I've had major abdominal surgery twice, in the last 6 years, and no doctor at the hospital has ever questioned the validity of my claim when I tell them that I am gluten sensitive. I have even told some of them, (such as my GP), that I never had an official celiac diagnosis, but he still has never questioned the "fact" that I'm gluten-sensitive. That's why I say that it's a moot point, for all practical purposes. Of course, as they say, YMMV.

Tex

P. S. Apparently Sara and I were writing at the same time, and she finished before I did, so she has already covered most of this. Consequently, I apologize for being so long-winded, for no good reason. Since I'm naturally lazy, though, please forgive me if I don't rewrite this entire post.

[patc73]

You are all my saviors! After thinking about this overnight, I think I'm going to disregard the doctor's advice and go with yours. It just doesn't "feel right in my gut" to go backwards at this point and reinflame my intestines just to prove I'm gluten sensitive. I will order the Budez in case of a flare, but right now, I'm better (no D) and I figure, if it ain't broke, don't fix it. I'm going to cancel the endoscopy appointment, too. Dealing with MC with diet and Questran is working for now. Thanks so much, Tex, Sara, and ant!

[patc73]

Oh, and also, I had a rash, that I strongly suspect was dermatitis herpetiformis, for years that has cleared up in the 20 days I've been GF. If DH is the skin manifestation of celiac, and it's gone, doesn't that prove I'm gluten intolerant?

[sarkin]

Pat,

I'm liking your thinking. (I not just agreeing with you for agreeing with me here - I'm also applauding your reasoning overall!) Great news about the rash. I think you had enough proof without the rash - but that would be a clincher for me, too.

Some folks have a honeymoon period when removing gluten from the diet, followed by symptoms indicating other food intolerances. I truly hope it doesn't happen for you - but if it does, you'll get that figured out with the same good thinking. Enterolab or MRT testing might be helpful at that point. That's how I found out eggs were off-limits for me - dairy and gluten I figured out via the hard lesson of just the kind of trial you're smart to avoid - though mine was self-inflicted, not doctor-ordered.

GOOD FOR YOU!

Cheering for you in the "other" Brooklyn,

Sara

[ant]

Dear Pat,

Happy you took charge of your own body.

I forgot to add, I also have two genes that predispose to celiac. A simple cheek swab can check your genes for predisposition to celiac. No challenge, no pain.

I did that through Enterolab, but the actual lab they outsource to is run by The Red Cross (not many docs will argue with a Red Cross document).

Best, ant

[sarkin]

Ant,

Zizzle's doctor did argue with that result, but he's special and famous ;) And - of course - when *he* ran the same test, it came back with the same result Enterolab had reported. (Because she hadn't run out and changed her jeans - oops, I mean genes...)

Science, medicine - maybe we can fix them up on a blind date.

L,
S

[tex]

If DH is the skin manifestation of celiac, and it's gone, doesn't that prove I'm gluten intolerant?

Yes it does, and any doctor worth his or her salt, should recognize that as valid proof. The evidence can't possibly be any clearer than that.

Please be aware that if you are subject to DH, you will almost surely have to be careful about skin contact with cosmetics, (and virtually anything else), that contains gluten, because it means that the epithelium of your skin is just as sensitive to gluten as the epithelium of your intestines.

By contrast, most of us who are gluten-sensitive, don't have to avoid skin contact with gluten, because it doesn't cause any symptoms. We only have to keep it away from our GI tract, beginning at the lips, and extending all the way to where the sun don't shine. For anyone with DH, however, that exemption does not apply. The symptoms may be restricted to the skin only, (IOW, no D), but DH is no fun, so the precautions have to be extended to include avoiding skin contact, also. I'm not certain that this rule applies to anyone and everyone who has DH, but it apparently applies to most cases, so it should be kept in mind.

Good for you. You made the same choice that most of us would have made in that situation, I believe. Doctors who ask patients to do a gluten challenge have apparently forgotten the Hippocratic oath. Shame on them.

Tex