GI doc trying me on Entocort and have some questions

brookevale · Post by **brookevale** » Wed Apr 30, 2014 7:43 am

Hi,

Last I posted I was tested for MC and it came back negative. I saw my GI doc last week and he wanted me to try Entocort anyways as I'm still having the D, food intolerances, weight loss, and unexplainable female and bladder itching and pain (severe pelvic pain too) that are worse after I eat. He is wondering if I have MC but it just didn't show up in the pathology or is in too early of a stage to test positive. Ok, so I tried taking just one 3mg pill last week and had panic attacks later in the day. I am trying it again today to see if the anxiety was caused by something else. I have a few questions. Has anyone had anxiety or panic issues on this drug? How is it that Entocort works exactly on MC? Does it allow better absorption of foods? I think that's it for now. I have been doing a food elimination diet but will be honest that recently I have "relapsed" and ate some dairy, gluten, and soy. No surprise that I stepped on the scale this morning and lost another 2 pounds, stomach gurgling is pretty bad, and loose stools have increased. I have come to realize too that I cannot tolerate iron pills which is a problem as I am anemic.

MarthaE · Post by **MarthaE** » Wed Apr 30, 2014 8:01 am

Hey Brookevale,
I don't know about the pain attack being associated with the entocort, but I do know how stressful the MC can be. I have found multiple food sensitivities and am still trying to figure out what I can eat. I have low iron and have started a supplement that seems to be easy on my belly http://www.swansonvitamins.com/spatone- ... MgodihsA9g I am still on one entocort daily and still having active symptoms. It may take a bit for your belly to adjust. Let me know how you're doing. Hope you're improving soon. m

MarthaE · Post by **MarthaE** » Wed Apr 30, 2014 8:51 am

oops panic attack, sorry

Heady · Post by **Heady** » Wed Apr 30, 2014 9:18 am

Some of us have moments when we purposely or inadvertently consume something our body can't handle! Get back on the wagon and work hard. You didn't mention "exactly"what you are eating!
I can't stress enough how important diet is. My diligence with my diet has been a life saver for me. When I first got sick last oct. I cut out caffeine,supplements. The day I found this site I cut out gluten,soy,nuts, dairy,raw veg,fruit,artificial sweetener. A week later I gave up oats,egg & within days...NO D. Many of us are unable to tolerate supplements(other than vit.D)when in a flare. I suggest start cooking in a cast iron fry pan & start eating liver to help with the anemia. I highly recommend you purchase Tex's book in the upper right hand corner of this forum as it explains our MC clearly.
I will leave the medical explanation of Entocort & how it works to the forum veterans.

Post by **tex** » Wed Apr 30, 2014 9:51 am

Hi Brooke,

I'm sorry to read that your symptoms are continuing. Corticosteroids seem to work primarily by stabilizing and suppressing mast cell numbers.

Unfortunately not everyone can tolerate Entocort, because for some individuals it causes neurological symptoms of various types. Listed known psychiatric side effects noted in post-marketing data include, for example, psychosis, depression, aggressive reactions, irritability, nervousness, restlessness, and anxiety. So presumably it can probably also cause panic attacks. What's surprising is that only a single 3 mg capsule would cause such a reaction. You must be very allergic to it, if it is the cause of the reaction.

Yes, Entocort can help nutrient absorption by suppressing inflammation. However, please note that for most of us, it is not effective enough (even at maximum dosage) to overcome the effects of major food sensitivities that remain in the diet. IOW, if you are sensitive to gluten and/or casein, for example, then the Entocort will probably not be able to suppress the inflammation as fast as it is generated by those foods, if they remain in the diet. For a relatively small percentage of people, Entocort can bring remission without diet changes, but most of us are not that fortunate.

Some members here have been able to rebuild their iron level by adding blackstrap molasses to their diet.

Your symptoms suggest major mast cell/histamine issues.

Tex

brookevale · Post by **brookevale** » Wed Apr 30, 2014 9:55 am

Thanks all. I pretty much eat meat and vegetables only. I can't really tolerate anything else. I thought I was ok with eggs until I went three days w/o them and noticed improvement so no more eggs. My challenge has been that my family loves their sweets so they are in the house. My worst time of wanting to eat outside of my diet is after 8:00. I have a history of adrenal insufficiency so my circadian rhythm is off and I get horrendous cravings in the evening. I have Tex's book but searching through it didn't find info about how entocort works exactly on MC, the intestines, etc. I guess I just want to know how it reduces the inflammation and heals if it really heals it. This forum is great as I can tell on myself when I don't eat well and get reminded of how important sticking to my safe food list affects me.

alcyone · Post by **alcyone** » Wed Apr 30, 2014 10:24 am

Hi Brookvale,

Sorry to hear you are having trouble! I can't comment on the issues with Entocort since I've never had it, but I do have some experience with anemia and a seemingly irrepressible sweet tooth.

As Tex mentioned above, blackstrap molasses can be great for adding minerals into your diet, especially when taking them in pill form is too harsh on your system. I have recently started taking a couple of tablespoons a day for extra potassium, magnesium, calcium and iron, and I tolerate this very well. The main reason I wanted to mention this to you is that it has had the added bonus of helping me with my sweet cravings. Taken straight, blackstrap is pretty bitter stuff, so I started mixing a couple of teaspoons into my almond milk and it gives it a flavor similar to chocolate milk. I wouldn't have guessed that would be the case, and maybe it's just been so long since I've had chocolate that my tastebuds are skewed, but it was a pretty happy discovery. I also sometimes mix about a teaspoon of the molasses with a tablespoon of almond butter, and it gives that same chocolate-ish kick.

I realize this type of "treat" may not be as exciting as the things your family keeps around, but getting creative and finding something you can have that won't make you sick would be a huge help to you in those weak moments. This disease definitely helps us think outside the box!

Wishing you the best,
Erin

brookevale · Post by **brookevale** » Wed Apr 30, 2014 11:04 am

Tex,

I didn't see your response until after I posted. Thank you for the info on entocort. I am also having numbness. I think I am just one of those people who is hypersensitive to medications and supplements. I will get the molasses from our food coop. I am grateful for this forum. Though I tested negative for the MC I have had all of the symptoms and reading everyone's experience coincides with all I have and continue to go through. The weight loss is awful. I am trying to push myself to do some yoga dvds as I am having muscle wasting. I will keep checking in.

Thanks!
Brooke

Post by **tex** » Wed Apr 30, 2014 5:48 pm

Brooke wrote:I have Tex's book but searching through it didn't find info about how entocort works exactly on MC, the intestines, etc. I guess I just want to know how it reduces the inflammation and heals if it really heals it.

That information is on pages 57–58. Here's a partial quote:

Most references in the literature claim that the mechanism by which corticosteroids manage to suppress the symptoms of inflammatory bowel disease is unknown. A more extensive search of the literature, however, shows that this is not really a mystery after all, and the way that they work is indeed known, it’s just not widely recognized. Research shows that corticosteroids reduce the number of mast cells present in intestinal mucosal tissue.1

And here's the reference noted in that quote:

1. Goldsmith, P., McGarity, B., Walls, A., F., Church, M., K., Millward-Sadler, G. H., & Robertson, D. A. (1990). Corticosteroid treatment reduces mast cell numbers in inflammatory bowel disease. Digestive Diseases and Sciences, 35(11), 1409–1413. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/1977567

While corticosteroids are definitely capable of suppressing the inflammation, they do not promote healing. In fact, research shows that they actually interfere with healing. Therefore, we have to rely on diet changes to do the actual healing of our gut.

You're very welcome.

Tex

P. S. We have several other members who are so sensitive to Entocort that even a single 3 mg capsule causes strong effects.

janet · Post by **janet** » Wed Apr 30, 2014 6:41 pm

BROOKE I HOPE YOU FEEL BETTER SOON, AND START GETTING SOME WEIGHT ON.
ALL I CAN TELL YOU IS THT I HAVE BEEN ON ENTOCORT AND IT DID NOTHING FOR ME.
YES I HAD SIDE EFFECTS, QUITE A FEW THE WORSE ONE I THINK IS MY HAIR LOSS, WHICH IS QUITE SIGNIFICANT
I TAKE A PRIDE IN MYSELF EVEN THOUGH I AM GETTING ON IN YEARS.
TRUETHFULLY WHICH IS ALL I CAN SAY FOR MYSELF.
AFTER ENDURING MONTHS OF THE STEROID I AM BACK WHERE I STARTED.
I WATCH WHAT I EAT, I AM CAREFUL. I TAKE IMODIUM. I CAN HACK THAT.
GOOD WISHES TO YOU BROOKE, ENJOY YOUR FAMILY.

MARIE
I HAVE HAD PANIC ATTACKS, THEY ARE TERRIBLE, I NOW PUT ON DEPEND PANTS, WHEN I DO OUT.
ITS A SECRET SO DONT TELL ANYONE

Heady · Post by **Heady** » Wed Apr 30, 2014 9:52 pm

Hey girl I hear ya.... I got on the scale on Sunday morning and Was shocked that I am down to 125 lbs.
I never dreamed that I would ever lose his much weight to be down to what I weighed when I got Married in 1986. Two years ago I weighed 180 lbs. Hang in there.

brookevale · Post by **brookevale** » Thu May 01, 2014 9:09 am

Thanks again everyone for the support and information. I am having very annoying symptoms with the Entocort--tired yet have weird energy, spacey. I've only been taking 6 mg as I'm nervous to take the whole 9 mg. Something I have been thinking about is why on earth would the dosage for entocort be the same (9 mg) for a 250 pound man and a 110 pound woman (me)??? It doesn't make sense to me. I have been reading about the discrepancies in drug trials and their inherent disregard of gender and body weight. I recently saw a 60 Minutes episode that highlighted this. So, I seriously don't believe that I should be taking the same amount as someone twice my size. This is my reasoning for taking only 6 mg. If the side effects don't improve, I may go down to 3 mg to see if it helps the inflammation and side effects are more tolerable.

Heady · Post by **Heady** » Thu May 01, 2014 9:35 am

That makes sense to me also. But I am not an MD.
My worst craving time is evenings also. I have been forcing myself to climb into a warm tub with Epsom salts and a book,go for a walk,go shopping,ride my exercise bike in front of TV, tonight I am going to a friends baseball game. anything to busy myself away from food. Last week I smashed up organic brown rice cakes into a ziplock bag and slowly ate them little piece at a time for family movie night. I have had a hard time not allowing dietary concerns to consume my every thought.

Post by **tex** » Thu May 01, 2014 9:54 am

Brooke,

You are quite correct about the dosage/body weight issue. Any veterinarian, rancher, or farmer, when treating livestock or pets, determines the dosage of any medication based on either weight or age (or both) of the animal being treated. Why MDs observe only the age issue (while totally disregarding weight) is beyond me.

The drug companies get around this issue by convincing the FDA (which is easy to convince, since the FDA does no tests of its own) that their products are safe and effective over a broad range of dosages, so that the labeled dose is suitable for all patients for which the label is targeted. The problem with this approach is that while the products may indeed be generally safe and effective for "most" patients at the labeled dosages, precious few patients actually receive an optimum dose because of the one-size-fits-all approach. While a lot can be said for the universal appeal of "simple" treatments, in many cases they leave a lot to be desired.

Tex

brookevale · Post by **brookevale** » Sun May 04, 2014 1:07 pm

Thought I'd provide an update. This is my 5th day on Entocort. I think I have found a manageable dose that fits me with not too many side effects. After all, like I stated before, I disagree that meds are one size fits all. I am taking 1 3mg and empty out 1/2 of a 3mg capsule, so 4.5 mg once in the morning. I do still get side effects like dizziness, "spacey" feeling, nausea. I had a Norman two days ago and haven't had D since. I am still struggling with sticking to my diet but doing much better. I also realized all of the excess meat I am consuming is adding to my bladder issues. I think it's because the bladder does not like an acidic body and meats are acidic. I try to balance with alkaline vegetables. It's a shame I can't tolerate fruits as I could alkalinize that way. So, I started consuming a few Prelief tabs a day, which are supposed to balance acidic foods/beverages. Since I keep cheating with some sugar/carbs for nighttime snacks I think that is contributing to the acidity as well. And, still having female yeast/bacteria issues but they are improving (2 months of this crap!). Trying to add Florajen acidopholus probiotics when I feel I can tolerate.

I'll keep checking in. Nothing worse than someone blasting their problems on forums and then never reporting on what works.