prednisone question

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kcgh03
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 8/31/2008 3:04 PM (GMT -7)   
Hi all! 
I was diagnosed with Crohn's disease this past Dec. I recently changed Dr's b/c I felt like I was getting nowhere with the old one.  Good thing I did b/c my "Mild" Crohn's is actually more toward the severe side.  The old Dr was treating symptoms rather than what was REALLY going on in my body. 
I have been VERY FORTUNATE in that my symptoms have been faily mild.  My Dr thinks it is because of a built up pain tolerance since she thinks my Crohn's actually started at least 10 years ago.
Anyway, on to my question!
I was put on a 40 mg taper of prednisone about 11 weeks ago.  I felt GREAT while on them!!!!  I noticed when I got down to 5 mg that I was getting a little crampy and tired again, I knew it didnt work.  2 days after ending the taper I was definately flaring up again.  I was put on antibiotics to see if that helped.  I didn't make it 4 days on that without calling the Dr.  I guess since I felt so good on the prednisone I FINALLY felt the full brunt of Crohn's once I got off of it.  She started me on another taper of prednisone to get the flare gone and she said that I would probably be starting 6MP when I go back to see her on the 11th.  I am feeling MUCH better on the roids again but it is taking a little longer than last time. 
What I am wondering is is there a such thing as being on a maintenance steriod dose to prevent me from having to move to the 6MP.  I am really worried about taking a new medicine and the side effects.  I know that the prednisone works and that my side effects are minimal and tolerable.  Do you think that it is an option or not since I flared up so quickly after my first round?
I am looking for any advice on this....I want to be fully prepared when I go to my next visit!
Thanks
 
BTW:  I am also taking 4000mg of pentasa

kcgh03
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 8/31/2008 5:40 PM (GMT -7)   
Thanks Kasper. I was afraid entocort was the answer. I was put on it by my old Dr but my new Dr says that for me to be on it was like shooting bee bee's at a bear. She said that my Chron's is effecting so many places that the entocort can't actually reach all of them and be effective. Could be a difference in opinion in Dr's. I do know that I never felt as good on the entocort as on the prednisone. hum..... I feel like I keep going in circles, I guess alot of people feel that way with Crohn's!

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 8/31/2008 5:55 PM (GMT -7)   
Everyone is so different! Because of the whole bone loss issues etc. with Prednisone, doctors do not like to have patients on it often and even more not as a Maintenance Drug. That is the thing about Prednisone. It works so well to control the Symptoms that need to be controlled right away: Pain, blood loss, severe inflammation, etc. But unfortunately, for many (like me) with such a severe case, we get sick right when we get off. Eventually it seems like a roller coaster type thing. Sometimes it is necessary and sort of worth the break of these awful symptoms. You are fortunate to be one that doesn't have many side effects. In a way that is a good thing. And because of that IF YOUR BONES ARE OKAY, you may be a Crohn's patient who is able to be on them more than the average.

Entocort DOES work for some and it is more of a MAINTENANCE Drug then Steroids and much better for you as far as side-effects. Honestly, I would not be worried about going on it. With a drug like this the possible side-effects are a lot better then the pain and suffering we go through due to this illness. Does that make sense?

Please feel free to contact me anytime with questions as I would be more than happy to help!

Take Care and hope today is an "ok" day for you!

~ Brittany
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA, on and off of prednisone temperarily 20mg right now....
Multivitamin, Probiotics, iron, fish oil

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/31/2008 6:22 PM (GMT -7)   
Hi I did have a GI suggest it as a maintenance med. I do have some problems on it like terrible heatburn. Insomia and mood changes.I did not go back on it and think of it as sort of a emerg. drug for me. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 8/31/2008 6:28 PM (GMT -7)   
Yeah that is pretty much how it goes for me to! I think some doctors are different I guess OR they get desperate as we all know you know?! Crazy!
Good luck and hope it is helping you:) LOVEPINK
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA, on and off of prednisone temperarily 20mg right now....
Multivitamin, Probiotics, iron, fish oil

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/31/2008 6:48 PM (GMT -7)   
Ahhh Prednisone, the drug we all Love to Hate.

It's awesome that Prednisone provides "immediate" relief for you, but as others have mentioned, there are some pretty serious long-term effects from Prednisone that you need to be aware of. My brother is only 34 and has had 2 hip replacements due to bone loss from intermittent steroid use. For this reason, my doc refuses to put me on steroids unless it is a life or death situation (like earlier this month). You, however, might not have the bone issues like lovepink said, so you might be okay... but definitely do your homework and be prepared to talk to your doc. I can't imagine being on Prednisone for the long haul, but I get every nasty side effect in the book from it. I guess it likes you better. I'm jealous!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 8/31/2008 6:51 PM (GMT -7)   
Well I think we all know the potential side effects to these scary drugs! I guess when you really have no choice it is worth it. But do all you can to help prevent these nasty side effects. Take Calcium with Vitamin D, try to get excersise (even lifting small weights), etc. Good Luck everyone! LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/31/2008 7:09 PM (GMT -7)   
Hi all. There are some mis-conceptions on this thread that I think should be cleared up.

Someone alluded to Entocort being better than steroids. Entocort is a steroid called Budesonide, and while is has less systemic effects than prednisone, it does carry long term risks as well. Studies have found that Entocort can cause just as much bone loss as prednisone, unfortunately.

In fact, someone on this site (Judilyn) contracted AVN while on Entocort! From one of her posts: "I also had severe bone loss and developed avascular necrosis in my shoulder, leading to a partial shoulder replacement. I'd recommend treating Entocort just like Pred, and staying on it for the shortest time possible."

Bottom line is that Entocort is not a maintenance drug and there most definitely ARE significant side-effects.

I could be wrong of course, but my understanding is that Imuran/6MP carry less long term risks (for most people) than long term low-dose prednisone. I only come to this conclusion because more people seem to be on Imuran than on continuous low dose prednisone as a remission maintenance strategy.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).

Post Edited (Rider Fan) : 8/31/2008 8:14:53 PM (GMT-6)


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 8/31/2008 7:27 PM (GMT -7)   
Like I mentioned before ALL DRUGS are different for all people. Some people get side-effects and some don't! Whatever works for you is what you should do. Good Luck with what you decide and remember we are all here for each-other! We can all go off of experience on this forum and that is what I love about it. It doesn't necessarily mean anyone is wrong or right. LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/31/2008 8:04 PM (GMT -7)   
Yes, people react to drugs differently and I'm not saying I have all, or any answers. But when people say or imply things that are contradictory to scientific evidence, I think they should be corrected before other people who read this thread make improper conclusions. I don't think this means I'm not here to help....
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 8/31/2008 9:33 PM (GMT -7)   
Hi,

I have had crohn's for 28 years. I have been on Remicade and am currently on Humira. But guess which drug has been my miracle drug and saved my bacon many times over? Prednisone. I to tried Entacort, but it didn't work as well for me as prednisone. I think that when your crohn's reaches a stage where you can't get off pred., you need to discuss other drug options like remicade, or maybe even a bowel resection. You didn't say where your crohn's is, and that will play a part in what treatment is right for you. None of these drugs are without their side effects, and I know first hand how scary it is to start them. Have a good talk with your GI, and then make your decision.

Julia

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/31/2008 11:11 PM (GMT -7)   
Prednisone is basically a booster med until the maintenance meds kick in or pred is used for emergency short term relief.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kcgh03
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 9/1/2008 4:48 AM (GMT -7)   
Thank you all for the info. I do have side effects from the prednisone but I feel willing to deal with them to keep me from going on 6MP....I know that is crazy! I am coming to realize that the steroids are def a short term fix, I just wish I could feel so good all the time. I think I am just going to take all my issues up with the Dr and let her make the best choice for me. Will do more research on the 6MP as well.

As for where my chron's is. well, the worst section is in the ileum and was almost completely obstructed this past Dec when I had my colonoscopy. There are other areas of infalmation and spazing throughout the small intestine. I also had ulcers and a palup in my large intestine. I had a small bowel series done at the begining of the summer that showed WAY more than the colonoscopy, mostly b/c the scope couldn't get through to see it.
We'll see how everything turns out. It just sucks that I have gone this long without many symptoms and now that I am "getting better" I start getting the full fledge ones....I guess it has to get worse before it gets better!

Thanks again, so happy there is somewhere to talk!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/1/2008 8:23 AM (GMT -7)   
Hi Sounds like a good plan and in the meantime enjoy the good results your getting from the pred. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2687
   Posted 9/1/2008 11:24 AM (GMT -7)   
My doctor has told me that the pred effects get worse the longer your on them. I felt great on it, but no way would I want to be on it long term. It basically ages you in a hurry. I certainly wouldn't want cataracts, a hump on my back, brittle bones, and many other SERIOUS things that DO happen after a long time being on it.

I'm pretty scared of the side effects of the other medications as well. But when the time comes to step up, I will. Not much of a choice.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Just finished tapering off Prednisone *YEAH*, Asacol, Questran, Toprol XL (for high blood pressure).


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/1/2008 11:27 AM (GMT -7)   
GOOD LUCK to you Jennifer! All drugs are scary but don't let them scare you or stress you out to bad. I always tell myself that the nasty symptoms from Crohn's are (or can be) just as bad. Crohn's is a scary illness in itself. USUALLY the side-effects from steroids or really any drug can or do worssen after a longer period of time and you are right. Just listen to your body, do research on all drugs and do all you can possibly do to help NOT get the side-effects now or in the near or far future. And Good Luck to you and your body!
LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....

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