enterocort side effects?

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pix
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Date Joined Mar 2008
Total Posts : 134
   Posted 4/2/2009 7:09 PM (GMT -7)   
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I have been started on enterocort for my autoimmune hepatitis, and I know it is useful in Crohn's, too.  (which I also have....)  I know it is a steroid that is supposed to have "minimal" side effects compared to prednisone.  I trust my doctor, but hey, a steroid is a steroid, right?  what do I have to look forward to? 
Pix

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/2/2009 8:36 PM (GMT -7)   

Pix, the drug is spelled Entocort.  I found an explanation of side effects here:

http://colitis.emedtv.com/entocort-ec/entocort-side-effects.html


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/3/2009 11:13 AM (GMT -7)   
Thanks, Hep93. It was a good link.
Pix

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/4/2009 11:08 AM (GMT -7)   
Wish you the best, Pix. My mom has taken prednisone for 18 years and it really has taken it's toll. I've never heard of this other option. I'm going to read up on it.

My mom also has AIH. Stinks....to be told you are sick and they have no real explination.

Margaret

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 4/4/2009 11:27 AM (GMT -7)   
Mrsqt, why has your mom taken Prednisone for so long?  If anyone ever read about the long list of side effects from this drug in the PDR (Physician's Desk Reference), they'd never touch the stuff.  Aside from the usual side effects of agitation/nervousness/pacing/weight loss, it is also the #1 cause of ostenecrosis (bone death) which usually affects the hips (femoral heads), but also can attack any large joint (knees, ankles, etc.) and cause tiny stress fractures in the spine and long bones.  I have bilateral hip replacements from ON, though mine wasn't caused by steroid use.  I realize there are certain conditions where Prednisone must be taken, but if there is any alternative whatsoever w/o the harm to bones, I'd certainly think that would be better.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 4/4/2009 1:28:41 PM (GMT-6)


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/5/2009 10:02 AM (GMT -7)   
My husband Harvey (transplanted 1/21/09) is currently taking Entocort (3mg 3 times daily). He has not taken prednisone since his hospitalization after the transplant. With the exception of high blood pressure, I see no side affects from taking Entocort. I understand that this is cutting edge medicine (according to the Director of Transplantation).

I wish you well.

Penny

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/5/2009 11:03 AM (GMT -7)   

Dear psc wife,

Thanks for responding to my post!!!

I don't have any side effects (yet), but I've only been on it for a few days.  I might have a transplant in my future, too, and I would like to ask  "How long was he 'disabled' by end stage liver disease before his transplant?" (I think my question really is "When could he no longer live alone?", since I don't have a person to be my caretaker)

Pix


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 8:36 PM (GMT -7)   

 

Pix,

 

Sorry for the delay in getting back with you.  I’ve been working too many hours.

 

Anyway, Harvey was a truck driver and he was becoming dangerous on the road due to his level of concentration.  It just wasn’t worth it.  This occurred May 31, 2006.  His symptoms didn’t become debilitating until the end of October, 2008.  He was pretty much bed ridden by that time.  He was transplanted January 21, 2009.

 

I only work about 2 ½ miles from home.  Before the surgery, he slept most of the day.  I would prepare breakfast and see that he took his meds in the morning.  He would sleep until I returned at lunch.  Again, I would prepare him something to eat and have him take his meds.  They he would piddle around for a bit and return to bed.  I would come home after work and keep him up as long as I could.  He would toss and turn most of the night.  He simply couldn’t sleep.  But he was so tired, he couldn’t do anything. 

 

He was hospitalized in November, 2008 and ended up with a feeding tube.  This was actually a blessing since he had lost his appetite for food.  I could ensure he got the calories he needed and that he took all of his meds (especially his Lactulose).

 

I’m sorry you don’t have someone directly supporting you.  Do you have friends or family nearby?  You know, you will need a great deal of support after the surgery.  It’s good that you are trying to get things in order.  Understand that everyone is different.  Harvey's case was extreme.  I met several people at the transplant clinic 2 weeks after their surgery.  They looked wonderful.  The only thing that gave them away was their mask. 

 

Wishing you the best.

 

God bless,

 

Penny


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/8/2009 11:07 AM (GMT -7)   

Thanks, Penny.  Of course I have family and friends, but I don't know how I would ever figure out how to ask for so much help, especially when I wouldn't know what I need, since I would be so sick.  I will most likely just stumble along until I qualify for some sort of home care, or nursing home.  I'm not there at all yet, and I'm not the sort of person to pretend it's not a possibility.

Pix


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/8/2009 12:14 PM (GMT -7)   
Hi Pix, I can relate to not knowing how to ask. I didn't either and my not asking for help as a working caregiver almost killed me. You as a patient really need to start now and get someone or ones involved that you really trust to follow through with things. You already know what to expect so don't wait too long or you may not be able to explain things to them properly.

I think the first thing is to have a heart to heart talk with any potential caregiver. Even have them come on this site or you can give them my email if you like..........I can give them a good idea what needs to be done when...........like when they need to step in for your behalf and get things done on the medical side. Or what to keep an eye out for with you personally to know when it's time for them to start assisting you. I am sure that most of our caregivers would be more than willing to help out educating them.

Pix you are a very important member of this forum.........please ask someone to assist you.

Lot's of thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/8/2009 1:56 PM (GMT -7)   

Dear Pink Grandma

Thank you so much for what you said to me in your post.  I do have financial things in place (power of atty, advance medical directives) and stuff like that.  My main person will most likely be my son, and I have actually talked about liver failure with him.  The idea of getting help from you guys never even crossed my mind, and it is a beautiful idea.  Maybe I will be able to get some sort of network going with my friends.  I guess I'm afraid I'd scare them all away. 

I am religious or at least I try to have trust in God.  I suppose maybe its time to try to put that into action, huh...

Pix

 

You are a very beautiful person, PG


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/8/2009 2:29 PM (GMT -7)   
Pix if you talked to some of your friends about this and it did happen to scare them away........then they were not really your friend to begin with........But with you being the beautiful person that you are........I am sure that any of your friends would step in to help you if you asked.

I am glad that you have your finances and power of attorney in order and it's good that you have talked to your son about liver failure.......but you are going to need his assistance before your liver starts to fail. I know as a parent you are trying to shield your son from worrying too much about you. But Pix as your son, it's his turn to help out his mom. When ever I need my kids assistance now........I ask. They are grown ups and it's about time that I started treating them as such.......Same goes for you. I will be looking forward to meeting your son online........whether it's on HealingWell or email.

Take care.......thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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