Entocort and low potassium

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tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 9/27/2007 9:40 PM (GMT -7)   
I have been on entocort for almost 9 mos. I started remicade about  4 mos ago and just before my 3rd dose I tapered off pred. I never got my 4th dose of remi due to reactions. about a month ago I spent 2 days in the hosp for h/a, vom and they found I had low potassium. I took IV supplements and got it back to norm. Also took a few doses orally after going home (also had a low mag level). I went for repeat labs yest and the PCP office called today and said it was low again, 2.7 and now they want me on mag and pot pills. Has anyone else had this happen on entocort? I think I've been on them too long and want to stop them. I can't find any info on tapering them. Can you do the alternate day dosing as with pred? I have been feeling awful and my feet and ankles are getting swollen. I need to call my GI I know, but he wanted me to increase my dose from 6 to 9mg last visit.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


gogogirl
Regular Member


Date Joined Mar 2007
Total Posts : 69
   Posted 9/28/2007 4:53 AM (GMT -7)   
I also had a potassium problem- down to 2.4,,, very scary! I as well was on enticourt, and i had blood sugar problems. I went off the enticort but had lasting potassium problems for almost a year after.

tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 9/28/2007 8:58 AM (GMT -7)   
That is not very encouraging. I HATE MEDS. So do you feel that it was the entocort if it took that long to recover? All the info I found was on short-term studies (8 weeks). I am beginning to think it is poison. I have light hair so I didn't even really notice til I was searching for clues, this AM I found a ton of facial hair I had never seen before.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 9/28/2007 8:58 AM (GMT -7)   
I probably had potassium problems too. I had really bad leg cramps quite often on Entocort.  I tapered off after about 18 months of being on it. The first time was unsuccessful, I had withdrawal symptoms and then I was put back on and stayed on one per day for 3 months.  Then once I was on Remicade through 2 infusions, I stopped it altogether and have been ok.  Except I just found out the Entocort gave me osteoporosis!  Totally sucks for a young woman, but now I'll get treatment for that.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 9/28/2007 9:58 AM (GMT -7)   
Hi Jenn4dex,

what treatment is there for osteoporosis? I've just got off of prednisone, am worried for this....


btw: one banana each day give higher potassium levels. Preventing cramps by eating bananas every day and drinking a lot of water. Stretch out before going to bed. Really good stretching. Helps a lot.
Have had severe leg and foot cramps for years. Even cramps in other muscles than the legs and feet. Really hurting bad! :(

Good luck, with all the best
from Ingrid :-)
 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. Don't use white sugar. No yeast in homemade breads.


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 9/28/2007 9:59 AM (GMT -7)   
That is awful news for a young woman. Thank goodness there are now fairly decent meds to treat osteoporosis. I am 59 and found out 2 yrs ago that I had it, when I first had a bone density test. Now after more pred and then entocort my bones are probably crumbling. The docs should reccomend calcium pills and steroids hand in hand. I do also take fosamax.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 9/28/2007 10:13 AM (GMT -7)   
The study I actually had my bone density test wants me to use Actonel and a Forteo injection (daily) so I am not sure that is the treatment for me. I am still deciding.  Otherwise my primary said she will refer me to an Osteo clinic where they would recommend either a monthly pill or injection.  Another darn treatment that I need.  Plus i refused to take Prednisone for this reason and I find out that Entocort is just as bad. I even lift weights 3 times per week.  Apparently not enough! Oh by the way, I'm only 38!
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/28/2007 2:20 PM (GMT -7)   
Diane,
 
Agreed that docs should recommend calcium pills along with steroids.
 
Pred can do a lot of damage in a very short time. And you had bad reactions to REmi. Why assume it wasn't pred or remi, but the Entocort? 
 
My daughter has been in remission on Entocort for more than a year and a half (except for the month after she tried going off it). On one pill a day since May, no side effects. So I would hate for you to prematurely blame a med that might be helping you.
 
It is not, by any means, as bad as pred, because pred is a systemic drug and Entocort's action is mainly in the terminal ileum. We hate pred, which caused significant side effects like raised blood sugar and kidney issues in just weeks. (I've seen another post on this site blame diabetes on a short course of pred.)
 
Are you in remission? If so, then why not go down to one pill of Entocort, daily?
 
The following link takes you to CCFA recommendations for supplementation. It says potassium and magnesium deficiencies can be caused by vomiting and D.
 
 
My daughter never has D...been on Entocort for 1 and 1/2 years with no magnesium or potassium problems.    
Daughter (19) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. In remission with Entocort 3 mg (one pill), SCD multivitamin, homemade yogurt, vit D3 800IU, 900+ mg calcium, B complex vit, 25 mg iron. Now on modified SCD (added rice and potatoes).  
 


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 9/28/2007 8:00 PM (GMT -7)   
njmom, this could very well be from remi but find it more likely to be the pred or entocort. I don't take any diuretics, and my D hasn't. changed too much. Today it was more than usual probably from the potassium pills, lol Also had/have the bufallo hump and the fat pads up above the clavicles.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/29/2007 8:42 PM (GMT -7)   
Have you been taking Entocort WITH pred?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/30/2007 5:32 AM (GMT -7)   
Hi I had low potassium before I started any meds in Nov. when I was hospitalized for abc. surgery. As for ost. get help from your DR. or maybe the pharm. can direct you for now since they know about combining drugs and vitamins .till you see your DR. Hair issues on the face go with the steriods .As far as going off Entcort ask your DR. he might want to replace it with something else.lol gail
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