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how has Entocort been for you?

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Crohn's Disease
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Posted 7/19/2009 5:09 PM (GMT 0)
Hi everyone,

I haven't been on the site for quite awhile. I've only had Crohn's for about 5 years, and for the past couple of years I have been able to go without any meds at all! Sadly, I think my time being med-free has come to an end. I struggle with symptoms that are easy for me to stay in denial about- but I realize that staying in denial won't make it any better!

So, what I'd love to know is how some of you have tolerated the drug Entocort. My GI doc is really pushing for me to take this, and swears it's much better than Prednisone. I have taken Prednisone twice in the past and tolerated in quite well- BUT I am sooooo afraid of the horrible potential side-effects. I am in nursing school and probably know more about drugs than is good for someone who has to actually take them! I had a moon face that lasted for at least 6 months after I stopped taking the drug. I didn't gain weight, but I know it made me lose some muscle mass. I am getting married in 4 months, and would love to look normal!

Also, I am extremely anemic- but I am "allergic" to iron. I have to take anti-emetics to keep down Slow-Fe, and even that doesn't always work! Because of the anemia my muscles get soooo sore when I exercise- to the point that it's painful to move at all. Does this happen to anyone else?

Thank you so much for reading! Sorry for the length- I am really struggling with this right now.

-Jenna :)
Posted 7/19/2009 5:41 PM (GMT 0)
Hi!

The first thing I must say. Get out of your denial right this second! I've been diagnosed for 6 half years but had it all my life. and it's wasn't until recently I said. Ok I really have a disease and I can't ignore it anymore. I'm still pretty young, so I party hard core. From clubs.. to after hours parties (and you don't want to know what we take to stay up that long) My crohn's is now worse off then when I first was told. I am probably to be blamed for the way I am now!! Been on remicade, got antibodies and now suffering from arthritis. Just start Humira

Congrats on your up coming wedding. I too am getting married but in 7 months. (In Jamaica) and I had the same problems. Wanting to look normal for my wedding. However the doc wont treat me with pred anymore. Side effect are to much for me and my body.

I did entocort for years. It didn't help me much (maybe cause I was to busy partying to pop probably pills) But it really could be the med for you. And it could give you the chance to get off the pred, and look normal for the wedding, Oh and maybe avoid the bad side effects of the preds (not to say you would get bad side- effects, not everyone does) but why not try anything to get off the preds if you can.

When I did take them however, I never had a bad side effect. no dizziness,nausea. and no moon face ;) (I had gain 50 lbs from predz)

I suggest you try you and see if it'll be your med. I say anything is better then preds.

Keep us posted. Good luck!

congrats again on the up coming wedding! :)

Tracy xoxo

Posted 7/20/2009 12:03 AM (GMT 0)
I haven't ever been on Pred, so I can't comment, but I've been on Entocort and I haven't had any side effects. I think right now I'm either becoming tolerant to the Entocort or I have a stomach ulcer from it (going to the doctor tomorrow, so I guess I'll find out then...), but Entocort has a lot less side effects than Prednisone does, and it's highly unlikely that it'll cause anything that will make you not look normal for your wedding. It's definitely an option to try in my opinion!

I haven't had any muscle pain or anything with my anemia. I have a lot of trouble taking iron pills as well, I'm not allergic but they are really hard on my body. The only one that has ever worked well for me with no side effects is Proferrin (I think it's only available in Canada), but it's really expensive - about $80 a month. I recommended Proferrin to RiderFan as well (he is also allergic to iron), and the last I heard, he had no problems with Proferrin and he was improving a lot on them. Again, if you're Canadian, it might be an option to try out. If you're not, there is probably something similar available where you live - it's heme iron polypeptide.

Hope this helps!
Posted 7/20/2009 5:59 AM (GMT 0)
Thank you both for the feedback and support! It's good to know that I can keep Entocort as an option. I think I'm going to try the Specific Carbohydrate Diet for awhile and see if I get some results from that before I go the drug route again. If that doesn't do the trick, then I guess Entocort will be next.

Blessings to you both,

-Jenna
Posted 7/20/2009 1:35 PM (GMT 0)
I find Entocort much easier to deal with than Pred. It has way less side effects. For me it takes about a week to notice an effect, but I have had pretty good luck with it. Congrats on your upcoming wedding.
Posted 7/20/2009 2:01 PM (GMT 0)
Entocort has much fewer side effects, but it didn't work at all for me. Went onto it twice when in severe flare and it did nothing so ended up back on pred.

Congrats on your upcoming wedding!
Posted 7/20/2009 2:30 PM (GMT 0)
Personally I will ONLY take Entocort. I don't touch Prednisone at all.....If ur looking for the lesser go w/ the Entocort....Plus too Denial is normal...Went through it myself til one day I said this disease is what I have, I won't let it have me... So taking care of ur self and medicating to hide the disease Sort of speak is the key...Cause when ur flaring the disease runs ur life...So Good luck and Feel better!
Posted 7/20/2009 4:09 PM (GMT 0)

I was on Entocort off and on for several years and it always worked really well for me up until this last time earlier this year.  Then, I guess it just couldn't get on top of the inflamation and I continued to go down hill.  I had fought Prednisone up to that point, always willing to pay the extra money it cost to be on the Entocort.  I finally had to do a course of Prednisone and stop the Entocort.  It has become ineffective for me.  Not sure how it would be in the future if I were to try it again.  Bottom line - I think it's a great drug when it works.

Good luck with everything...."this too, shall pass"....

Posted 7/26/2009 6:57 PM (GMT 0)
personally pred is 10 times the better drug for me compared with entocort - i was a disaster on it - but i've upper gi crohns so it wouldn't have worked for me for that reason - once your sure your crohns is only lower down in the terminal ileum & colon area its prob worth a go - note don;t let the dr tell you its less damaging on the bones its not in the long term- make sure you calcuim supplement the same way as you do on pred
Posted 7/26/2009 6:58 PM (GMT 0)
if you dont want to go the drug route ask your dr about a liquid diet - works well for some ppl - basically drinking ensures & no food for a period of time
Posted 7/27/2009 3:53 AM (GMT 0)
I was only on Entocort for three months and now Dr. has taken me off the entocort. I have developed a stomach problem they call it watermelon stomach = the lining of my stomach has many bloody open tissues and I have a severe case right now. I also have afew large ulsers now. I was told entocort being a steroid can cause ulsers. I never had this problem before I started on this med. Though I did had one small ulsers. They are treating my problem now with Sucralfate its suppose to coat the linning of my stomach so it will heal. I'm sure the reflux/gerd has not helped it any. I don't totally blame the med completely to my new problem but I'll never take the entocort again they'll have to replece this med with new one if they ever bring this med up to me. I started spitting up blood so I had it checked out and they did the endoscopcy. Sorry I'm not bringing good news taking the entocort. Dr. said he may have to do lazor surgery on some of the bleeding tissues though he is waiting on the biopsy report will call this week. He says some people but its a very low percentage get crohns in the stomach only like 5%. My stomach was fine three months ago when they did endoscopcy. I have crohns in smaller intestine. I'm just hoping the med will heal up this stomach mess.
For me Its pretty scary to take any meds though you have to when youre ill you just don't have a choice at times it seems.
Kathy
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