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Bye Bye, Prednisone: Hello, New Plan

Entchen

Chief Dandelion Picker
Hi all:

Had a surprisingly good visit with my GI today, considering the content of our conversation wasn't all happy and shiny. He tries hard to be friendly - although it often looks like it hurts - and he even managed to crack a smile or two today. He's very respectful toward me, emphasizes mutual decision-making, but is just not so high on the interpersonal warmth scale. But he takes good care of me and I'm getting to be a bit attached to him. ;)

His (hot, young) colleague gets even higher points today, though, because his report from my double balloon colonoscopy cites me as a very pleasant young woman. I should have slipped him my phone number when I had the chance! [Please no cracks about him having already seen My Best Side...]

Moving right along...I just barely escaped being placed on Imuran today. After extensive discussion, we have opted to try Pentasa first, even though both GIs emphasized that they doubt it will work. This is because the symptoms did not respond to Prednisone. Well, some of the symptoms that I care about responded, but the clinically significant ones did not. The GI's main reason for me trying Pentasa is so that we can say we exhausted ALL logical options before moving to the Imuran. He honestly doesn't think it will work, and he expects to see me back in his office within the next couple of months with worsened symptoms. I am certainly praying that this will not be the case and am hopeful that the Pentasa will work just fine. After all, even though we've only recently learned about the 15 cm of inflammation in the terminal ileum, and even though the Prednisone didn't bring down the inflammation, it's still only 15 cm. That's peanuts compared to what many of you have experienced. Guess we'll see if Imuran will be my "Christmas present" or not.

Have a great night and a good Friday / Saturday (time zone depending), everyone!
 
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DustyKat

Super Moderator
Hey Kelly, :bigwave:

It's so good to hear that your appointment went well. Keeping my fingers and toes crossed for you that the Pentasa does the trick!

:goodluck::goodluck::goodluck:

Keep us posted, :hug:
Dusty
 

Entchen

Chief Dandelion Picker
Oh, thank you, Dusty! It means a great deal to me that you and others are so vigilant about checking in with people on the forum. How are you and your daughter doing?
 
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DustyKat

Super Moderator
Aww, thanks Kelly. :blush:

We're doing fine, thanks for asking! Roo just had her last uni exam today so she will be coming home this weekend for a few days, YAY! She can't live long without the city lights so not sure how long a few days is! :lol2:

Thinking about you, :hug:
Dusty
 
Aww good luck Kelly. It's frustrating when you can't find anything that will work and you find yourself quickly zipping through the A-Z list of Crohn's medications.

Unfortunately the pred worked a little toooo well for me and they couldn't get me off it for years. So fingers crossed for the pentasa. I'm surprised you've not tried it before though. They put me on it the same time as the pred when I was diagnosed and I've been on it 18 years now :/ lol
 
Kelly,

I started Pentasa April 2010....the first few days I had a horrible headache, but it only lasted a few days. It took about a month or maybe a little longer for the Pentasa to start working, so don't give up just yet. I never took prednisone, but I did take another steroid (entocort) that didn't help me at all. I hope the Pentasa will help you as much as it has me!!!!!!!!!!!! GOOD LUCK GIRL
 

Astra

Moderator
Hiya Kelly

That's good news and a good consultation too!
I'm off the Pred today too! YAY! My maintenance med is Pentasa, been on it for 5 years now, never had any probs with it at all. I had been in remission all that time, until the infection back in Jan, and 10 months of Pred & Entocort.
I'll only be on Pentasa now, and if my terminal ileum plays up, I'm hoping for Humira!
So good luck Kelly, hope the Pentasa works for you too
xxx
 

Entchen

Chief Dandelion Picker
Appreciate all the comments. :)

Dusty, enjoy your time with your daughter!

Joan - so happy you finished the Pred today, too! (Well, I cheated and finished yesterday, but today's the official last day.) Fingers crossed that you will stay WELL for many months.

Others: Appreciate your input on Pentasa, and I'm relieved to know that the headaches will probably go away! I was dizzy last night when I tried to lay down but was fine otherwise (standing, walking around, sitting), how funny is that. I'd love to see Pentasa do what Pred couldn't and do a number to the inflammation.

Re. why I wasn't on Pentasa before, the first colonoscopy couldn't proceed because of technical difficulties (i.e., my colon is a twisty mess that isn't properly attached to wherever it's supposed to be attached to), so they didn't know about the small intestine inflammation until recently. Thank goodness for having full information now.

Cheers,
Kelly
 

ameslouise

Moderator
Good luck Kelly! Even though your docs are not optimistic about the chances of success with the Pentasa, who knows? We are all so different and our diseases respond differently. It's a lot of trial and error to hit on the right cocktail.

I hope it works for you and you find some relief! - Amy

PS Is the doc single??? :)
 
Kelly,
I too am "loopy and floppy" (love that BTW). I wonder how many others of us have that same difficulty. Pentasa did not work for me but it did not have horrible side effects! Wishing you boat-loads of luck,
Michele
 

Entchen

Chief Dandelion Picker
Michele, I'll be honest, I'm kind of excited to hear that you have crazy intestines, too. Loopy and floppy is a direct quote from my GI. Here's my question for you: can you prep effectively? We've been theorizing that it's the reason even a double prep is not fully effective, but we aren't sure. And, do you have balloon assisted colonoscopies instead of the regular kind? I like that they can view the small intestine as well as the colon in the one test -- kind of like a condolence prize for having crummy inner workings.

Amy, I think he is single. ;)

So appreciate hearing from people that the Pentasa really COULD work even though the Prednisone did not. This is what I wanted to hear!!!!!

I received some frustrating news today: must go on blood pressure medication for at least the next 3 months. We believe that it's high from the Prednisone (150/125 and 168/118 were recent "highlights"). Now that I'm off the drug and should be dropping the Pred-induced weight, too, we expect the blood pressure to improve, but in the meantime, I'm on meds. I lead such a healthy lifestyle that this feels...embarrassing, to be honest. Like my spin classes and other exercise and good diet aren't enough because now I'm fat and have high blood pressure (and both those things, exercise & diet, are TOUGH to pull off with active Crohn's! -- so to not really see the benefits is difficult). Tomorrow will be better, but it's been a tough three days. First I'm told that I'll almost certainly be on Imuran within the next 3 months and then I'm prescribed high blood pressure meds. Tomorrow will be better.
 
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Yuck, prep. I normally throw up all the way through it so I guess the answer is no. I do a liquid diet for 3 days before the colonoscopy. It is the only way I have found (in 26 years) that works for me. It is a pain in the butt (ha) and I can't work or go any where as I am weak but it beats being "dirty" and having the scope done. My very first GI guy had me do this. Talk to your doc. BTW: I pre-load myself with bananas and stuff before the prep stuff.

I need to be honest here, I stopped listening to the docs about 12 years ago complaining about the loops and twists and turns in my colon. I figure that is their job. I work with learning impaired kids and have some difficult cases...I don't complain to their parents about how hard it makes my job! YESH! Pet peeve, sorry.

I was just wondering if Crohn's sufferers seem to be more prone to this. :goodluck:

Michele
 

Entchen

Chief Dandelion Picker
Hey Michele: Not aware of anyone else on the forum who needs the balloon assist c-scopes, but I'm sure some others are in the same boat as us. My first colonoscopy was less than half completed because of the high risk of perforation, so I was delighted to learn that there's an alternate option. I haven't had to listen to complaining for 12 years like you, though! My GI was very matter of fact about it. Good man. You must get so annoyed at the whining!

Last time, I fasted for 3 days and did 2 preps and still wasn't cleaned out -- but -- they used some magic water wand thingie and made it work. Very interested to learn that only fasting works for you.

Cheers,
Kelly
 
Kelly, you might consider Entocort for the small bowel inflammation, along with Pentasa. My GI said they work better together; I know it's another steroid, but low-dose, and at least for me didn't have pred's lovely side effects.

I had to take that combo over Aza because I'm allergic to it. No one talks about Remicade or MTX as options?

And definitely slip your number to the hot associate-work your thing Girl!:thumright:
 
Kelly, good luck as you commence your Pentasa journey I hope it works for you.
Here in NZ my GI calls Pentasa a 'maintenance drug' whenever I have a flare I think "hmmph" so much for the maintenance drug but why is is not maintaining? Anway, whenever I ask my GI if I can stop it he always says "no" so obviously it does do some good I just don't know what though!!
Take care...
 
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