Day 7 Entocort - Status

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 10:47 am

Hi Everyone,

It's Rich. I am now of day 7 on Entocort and I really don't think I have seen any improvements yet. My morning still consists of at least 4 trips to the bathroom, with each bowel movement getting looser and looser (and more urgent).

I am very light headed at times and even feel a little shocky, this is mostly in the morning, until about 3PM'ish. I get better as the evening progresses.

I called my dr.'s office and unfortunately got the receiving end of his head nurse, the wicked witch of the west. I told her how I was feeling and she sternly told me to stay on Entocort, and give it some time. Well duh, if you are feeling OK while taking it. I doubt she has ever taken it. I think that should be a requirement.

Anyways, my sister who is a drug rep who sells to GI docs has been explaining my case to her trusted docs. The consensus seems to be that I should be on Prendnisone and then Asacol/Liada or the like.

My next appt with my doc is in 2 weeks, and I guess I just have to continue suffering until then, as usual. I do have some old Colestid laying around that I think I will begin to take, especially since I must travel the next couple weeks. By the way, I am also day 5 on GF and DF diet. I am still losing weight but seem to be stabilizing, perhaps.

I am kind of confused as to what to do right now...

Rich

Joefnh · Post by **Joefnh** » Fri Sep 10, 2010 10:53 am

Rich I do not remember, are you addressing the diet as well ? gluten and soy free?? Low fiber??

I and several others on this board have had good luck by also using Questran for a while until the Entocort takes hold. Questran is a binding resin that you mix in with some water and drink, it is orange flavored and pretty good. Generally it is used to reduce cholesterol, but does really sooth the gut and slow things down.

I use the Questran now as a fail safe, like before a plane trip or long meeting (if needed)

When I first started taking Entocort, I was holding nothing in including the Entocort pills, that obviously was a problem.

Keep in mind that for a good portion of us the Entocort takes 2 - 3 weeks to have an effect.

--Joe

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 10:59 am

Hey Joe,

Appreciate the prompt response. I am following the diet with respect to GF and DF but perhaps not so much with respect to fiber and soy. I will try to watch that too. Is there a specific link that details the diet? I am also waiting to do my sensitivity test to learn for sure about my soy sensitivity.

I also have questran and am familiar with it. The colestid that I mentioned is simply questran in pill form so it is more travel (TSA) friendly. I am sure the wicked witch would frown on my using colestid right now, but then again, she doesn't have to live inside my skin either. Sigh.

Going to Phoenix next week, then Baltimore the following week and ending up in Berkeley. Gonna have to get something stable and soon.

I sure wish they would juice me with Prednisone for some quick relief.

What are good examples of "low fiber"?

Rich

Joefnh · Post by **Joefnh** » Fri Sep 10, 2010 11:10 am

Robby good plan on avoiding the soy and lowering the fiber at least for now. I bascially went to a paleo diet for the past 6 months and am slowly adding 1 ingredient at a time back into my diet to carefully monitor any response.

Here is a link for a discussion on treatment options with diet or meds
http://www.perskyfarms.com/phpBB2/viewforum.php?f=27

Here is a link to multiple food intolerances
http://www.perskyfarms.com/phpBB2/viewforum.php?f=47

Here is one on the food ingredients that should be avoided
http://www.perskyfarms.com/phpBB2/viewforum.php?f=52

Here is one on meal suggestions
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53

All of these can be found from the top layer of this site the Forum Index. Also check out Dees cooking section. Dee is a professional chef with MC and she has some really good recipes there.

Remember the diet is as important as the Entocort. To be successful you really need both.

--Joe

Gloria · Post by **Gloria** » Fri Sep 10, 2010 1:56 pm

Rich,

It took four weeks for Entocort to begin working for me when I first began taking it.

Gloria

Post by **tex** » Fri Sep 10, 2010 3:24 pm

Rich wrote:I am very light headed at times and even feel a little shocky, this is mostly in the morning, until about 3PM'ish

Those are neurological symptoms of an adverse reaction to something. If they didn't show up until after you started taking the Entocort, then it is probably the cause.

If you don't want to take a chance on being slapped around by the Wicked Witch, then I suppose you are stuck with continuing the treatment. Personally, though, I don't take drugs that cause adverse neurological reactions, because they can sometimes do more harm to the body than a Wicked Witch.

That said, for some people, Entocort still provides benefits, even though it causes neurological issues for them. You have to weigh the potential benefits against the issues/risks.

You're pretty tough, (and dedicated), if you can put up with all that foolishness while flying all over the country, and doing your job.

Tex

Joefnh · Post by **Joefnh** » Fri Sep 10, 2010 4:40 pm

Rich Tex is correct that you must weigh the risks and benefits for you. I did notice a bit of dizziness after starting the Entocort but by week 4 it had subsided.

--Joe

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 4:40 pm

Neurological is a good way to describe how I feel. Drunk too.

Honestly, I don't feel tough or dedicated, though I appreciate the compliment or acknowledgment, Tex. I just call it having to deal with the realities and vanities of life, even though many days I would rather stay home and curl up in a ball. Heck, many times I feel I am simply working to pay doctor bills. I know I sound like I am whining, but I figure you guys don't see it that way. And I DO appreciate that. I just read your history Tex, and if anyone has reason to whine, it is clearly you. Yet you don't. That is what I call tough and dedicated. How do you do that?

I guess I am going to stay on the drug, at least through the weekend, to see how I feel. At least I can take it a little easy on the weekend. Plus my wife can watch over me.

I would hate to stop taking a drug this soon, especially if I need to give it some time to work, but it is a struggle. I seem to be feeling things that others simply are not (or perhaps a handful have). Would love to have the Wicked Witch crawl inside my skin for just a second. As you all know, she wouldn't feel very comfortable in there. She's be asking for Morphine :)

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 4:41 pm

I hear ya, Joe...

Curious as to the type of engineer you and Tex are?

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 4:43 pm

4 weeks Gloria? That will be a challenge if I can make it that far (at least if this ickyness continues)... Appreciate the note though. Perhaps the Wicked Witch would be willing to take the drug for me for the next 3 weeks, like a surrogate or proxy :)

Joefnh · Post by **Joefnh** » Fri Sep 10, 2010 4:44 pm

Rich I am an electrical engineer and work for MIT. Mostly optics related stuff. Overall pretty interesting.

--Joe

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 4:52 pm

Interesting Joe!

Similar backgrounds it seems. I am an EE also (Purdue grad). Started my career working E/O systems for a prominent defense/aero contractor. Amongst other things, designed and built the imaging and optical systems for GOES and NOAA satellites. Just saw the latest full disc image of the earth from GOES 15, impressive. Also spent a spell with jet engines/FADEC controls, etc.

Now, I run a company of very cool people (engineers, investigators, technicians) who investigate large loss fires, product failures, engineering disasters. Kind of a good culmination of my years of design, manufacturing, and failure analysis experience. Also a job that cannot be outsourced :)

Take care.

Rich

Joefnh · Post by **Joefnh** » Fri Sep 10, 2010 5:36 pm

Not bad Rich, it must be nice to be at the top of the ladder. The GOES 15 imagery is quite nice. I was looking over some of the Vis and IR take on that bird recently. Nice job. About 2 years ago I worked on the MASSIVES program. Experimental Sat imagery for NASA / NOAA 200 giga pixel stuff. It had active atmospheric compensation with a dynamic wavefront sensor. < 1/32 lambda

What band(s) in the near IR did 15 fly with?

I mostly work on the stuff that never sees the light of day...

--Joe

grannyh · Post by **grannyh** » Fri Sep 10, 2010 5:45 pm

Just curious as to your dose of entocort and how you are taking it. I was on 3 pills a day and I asked the doctor when to take them.. he said I would figure out my own best way to take them.. as far as he was concerned he didn't care when I took them.. all at once or spread out throughout the day. He said I would have to figure that out since there was no proven way to take them.

I took one in the morning, one at dinner and one at bedtime.. that worked best for me.

Although I consider myself to be in remission.. I still go to the bathroom several times in the morning.. I get up.. make coffee, grab a cigarette and go out for a smoke. Most times half way through the smoke I put it out and run for the john with the morning paper I have picked up when I first go out to the porch. Then after the john.. I take my pill (i have been on one a day for several years now) make another cup of coffee and finish my smoke on the porch. Usually then it is time for another trip to the "library". I don't have D now.. just need a couple of trips to be ready for the day...
grannyh

hoosier1 · Post by **hoosier1** » Fri Sep 10, 2010 6:23 pm

Joe,

Small world.

I havent worked EO since 1997. Started in 1988 when GOES Pathfinder (gen 1) was developed and commissioned.

But I found the following which has the IR specs on the new bird.

http://www.nasa.gov/mission_pages/GOES- ... ge_prt.htm

Rich