Should I refust the prednisone and just take the Imuran?

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dorothy678
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 4/8/2010 6:06 PM (GMT -7)   
I just came back from having a gastroscopy and a colonoscopy. I was expecting them to tell me that the Crohns is better or that they made a mistake and I don't have Crohns at all because I rarely have any symptoms. I was diagnosed 2.5 years ago. At the time the dr said it was severe and that I need to be on prednisone and pentasa. I refused to take the pred because I felt that because I didn't feel sick at all, my quality of life would get worse from the pred.  
 
Right now I am still feeling good. I get the odd few days of D but experience very little stomach pain and no other symtoms except an old fistula that has never caused me pain. I can eat, drink, and do whatever I want with few exceptions.
 
Well I was wrong about the test results. Again they are saying severe Ileitus and want me on prednisone and imuran. Again, I don't want anything to do with the prednisone. I am willing to try the Imuran. I know it takes awhile to work but since i am not feeling bad, I wonder if that matters.
 
My question to you guys and gals is if Imuran will work in reducing the inflammation or is it just for maintaining remission? Do you think I should go on the prednisone anyway just becasue he says so? I feel like he is getting mad at me for questioning his "expertise" but he really isn't giving me any options. He doesn't even come talk to me after the procedures. He sends his assistant. I am setting an appt to talk with him about this but I wanted to hear what others had to say from their own experiences. I also would like to go in there with a game plan and some of my own information.
 
Thanks for reading this.

Post Edited By Moderator (Nanners) : 4/9/2010 7:35:24 AM (GMT-6)


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 4/8/2010 8:15 PM (GMT -7)   
I said the last time before I got sick again that from now on I would refuse Prednisone - but I had a bad flare and it's hard to argue when you are sick in the recovery room after a colonoscopy and the dr is insisting you take this.  That being said, my last GI dr (before my current one) was against Pred except in extreme cases and he had me just go on Remicaide and Flagyl and Cipro and the whole bit.  I was probably the most sick under his care but did eventually get better.
 
This is just my experience, I have no suggestion for you.  You have to do what is right for you.  I am still on Pred from last November (so 6 months!!) and it wrecks my body.  If I (this is just ME) had a choice, (especially without a lot of symptoms) I would refuse it, drastically change my diet and lifestyle (especially while I am flaring) and see what happens for a little while. 
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 4/8/2010 8:22 PM (GMT -7)   
Pred is not a long term med. Ask to see how long he wants to keep you on it?
I also agree with doing what is right for you.
But I also think getting the doc's ok or at least reason for it is a good idea too.
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lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 4/9/2010 4:59 AM (GMT -7)   
Why is it you don't want to take the pred?
I'm actually not allowed to take it anymore as the side-effects were so bad and it barely touched the Crohn's. If it worked though I'd put up with the side-effects to feel better if I was ill but unfortunately in my case the side-effects are likely to create an even worse situation. So gutting as so many people get great relief from it.
 
 


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 4/9/2010 5:21 AM (GMT -7)   
My 14 yr old daughter takes prednisone when she is flaring. It helps quickly and she tolerates it well. It is usually given on a short term basis like 6-8 weeks, to get inflammation down. I know that long term, it has many side effects. Maybe, he sees the inflammation causing dammage even though you don't feel that bad. Perhaps he is trying to get things from escalating to the point where you need surgery. But you need to discuss this with him and decide what is best for you. My daughter is in a flare right now and on prednisone. Her GI which we saw 2 days ago says if her crohns comes back soon she may have to go on Imuran. We are trying to stay away from that and doing the SCD diet and LDN. We had great success with it last year, but not right now. Anyway, we will start again after this last prednisone course and see what happens. Anyway, talk to your doc and listen to his reasons for the prednisone. I don't think he'd reccommend it if he didn't see the need. Good Luck. Diana

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/9/2010 5:36 AM (GMT -7)   
Yup, I'm w/you about NOT wanting to take prednisone - but - Imuran can take up to 6 months to have any real effect, meanwhile damage is being done. I'm not even sure that Imuran can actually "treat" Crohn's activity all alone. It often needs "help" even after its taken full effect. Its more a maintenance med than a treatment med in my personal experience.

That being said, it would be a good idea to discuss this w/your gastro and ask how long he intendes for you to be on it. A reasonable alternative might be a short tapering dose of pred, switching to a tapering dose of Entocort EC and then Flagyl, Cipro or even Xifaxan and then add Pentasa along w/the Imuran to finish out the 6 months and for maintenance.

The fact that you have a fistula, regardless how bothersome or not, is one of the criteria used for the designation of "severe" Crohn's disease. And a fistula is NOT something to take lightly whether bothersome or not.

Since my Crohn's is mild and has been mild for 32 years I opted for Cipro for 6 months along w/the Imuran rather than Entocort or pred - but - Cipro is NOT w/o its serious possible side effects and serious muscle tears, especially of the Achilles tendon, are fairly common so I was VERY careful the entire 6 months to NOT stretch or overwork my muscles!

Flagyl was a miracle drug for my symptoms - BUT - I encountered peripheral neuropathy almost immediately w/it. Because it was so effective against the Crohn's I opted to stay on it at 1/2 the usual dose which greatly reduced the neuropathy to a tolerable level but doing so left me w/a mild neuropathy that lasted SEVERAL YEARS. It CAN be permanent for some.

We didn't try Xifaxan until my symtoms were pretty much gone so I can't say for sure that it was effective for me or not. But I had no side effects w/it and it felt good to know I was doing SOMETHING.

I've been on just the Imuran and Pentasa for several years now and doing well.
My computer says I need to upgrade my brain to be compatible with its new software.


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 4/9/2010 8:04 AM (GMT -7)   
I was given imuran as well as pred. but it is the pred that keeps thing at bay, but I'm down to 10 or 15mg per day, where the imuran I had weird side effects, easy bruising ans i would cut or bump my hand or finger and it would never heal. so I stopped imuran until my endoscopy apr.23rd then gi said maybe remicade, I couldn't hardly handle side effects on high dose of pred. but my cd is really bad in esphogus and throat mouth and leasions on my tongue, pred is the only drug that stops that flare. and that flare so far hasn't gone away for 6 months so far only on pred. does it quite it down, I take a couple of days off from pred and mouth and throat flare right up

artist guy


dorothy678
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 4/9/2010 8:33 AM (GMT -7)   
Thank you for all of your comments.

lilcrihnie... the reason I am scared of taking the prednisone is because it sounds terrible. The side effects sound 20x worse than the symptoms I have experienced from Crohns. I rarely get stomach aches or even D for that matter. I don't feel sick although they keep telling me I am.

Wednesday77...I agree..I have said that if my symptoms were bad I wouldn't hesitate, but like I said- they are not......and i have thought the same thing about just overhauling my diet etc, but the thing is I don't know what to eat and what not to. Most things don't usually bother me so when I do have a bad day I have a really hard time knowing what triggered it. The hardest thing is that the things I think bother me...like fruits and veggies...are supposed to be the things people eat to get healthier ...urgh- its all so confusing to me.

riesasmom....I think you are probably right about them being fearful of blockage and other complications...the assistant mentioned that. That is the one reason I think I should listen to my Dr. It's comforting to know that your daughter doesn't experience any side effects.

Crohnietoo...Flagyl is not an option for me. I am allergic to it and sulfa. You are right- I should take the fistula matter more seriously. I guess that's 2 good reasons for the prednisone...

MMMnavy...Yes, I feel that I should place some trust in my dr, but its hard when he doesn't talk to me or explain anything. He is always in a mad rush. That is why I am confused.

artistguy- Imuran sounds terrible too. Yikes! Do you get colds and flus more often too? I am an elementary teacher and I am wondering how that would work out....;-)

Well, the office called and an appt is made for Monday to discuss all of this. You guys have helped me come up with some good questions...instead of just saying no to the prednisone. I will ask how long I have to be on it and I will find out more about the Imuran too. Thanks.


~diagnosed September 2007 at age 29
~presently taking 1000mg pentasa 3x/day
~waiting to start prednisone 40mg/daily and Imuran 50mg/daily....after I speak to my Dr

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 9:24 AM (GMT -7)   
As kind of covered above there is a reason why both Pred and Imuran are given at the same time, Pred is a short-term drug to get the disease into remission, while Imuran is a long-term drug that keeps it in remission (hopefully). From my experience, going on Imuran alone will a) Take 3-4 months for you to start having true drug effects of the Imuran and b) may not help at all, because the Imuran alone might not be enough to bring your body back down to normal. Unfortunatly, while Pred is horrible, there is no denying that, its usually a necessary part of treatment for most.
 


Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/9/2010 10:44 AM (GMT -7)   
Well i am still new to this , since I was only diagnosed 10 days ago and I have been taking the Prednisone for 9 days now, so far nothing, however I gotta say I am worried since so many ppl say bad stuff about it. How long does it take for the "bad stuff" from it kick in? and what exactly are the "bad things" lol
42 yr Female
Dx'd with Crohn's 03/31/10, Fibromyalgia 97, Allergies since birth, Anxiety 06, Depression 97, IBS 00,
Endometriosis 01,Anemia since teen years, Osteoarthritis 00, Diverticulosis 07.
Just started Prednisone 20mg, Imuran 50mg x2


DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 3:01 PM (GMT -7)   
Tink42,

Rather then list the side effects, its probably easier for you to just go to Google and search "prednisone side effects", its a very common and very documented steroid used for a million different medical conditions, CD is just one thing it is used to treat for among thousands.

Everyone gets different side effects, some get all of them, and some barely get any.

Personally the only side effect i got from Pred was night sweats and weight loss, but alot of people experience things like moonface.

Within a week or two you will know what side effects you get from it, but looking at your signature you arent really on a super high dose of Pred so yours probably wont be as severe, alot of us start of at 80mg of Pred rather than 20mg

As for the end of the story, while Pred is "Bad" for our bodies, unfortunatly it is the only quick fix for CD flares, you will learn to Love and Hate Pred at the same time.
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/9/2010 8:21 PM (GMT -7)   
Why not consider Entocort, which is designed mainly to target ileitis? It is far safer than prednisone. 
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 4/9/2010 9:47 PM (GMT -7)   
When I expressed my initial reluctance against steroids, my doctor did say I could just do Imuran since my symtpoms were not severe.  But, that's just me and what he had said.  He also was going to put me on Entocort, and not Pred. 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Being treated by a Naturopath who himself has Crohn's.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/10/2010 3:35 AM (GMT -7)   
Ha! I can't take sulfa drugs either!!! When my Crohn's first struck all they offered me at that time was asulfadine. Gawd! It made me as sick or sicker than the Crohn's did. HOR-RYE-BULL stuff for me!

The SNEAKY long-term, guaranteed side effect from pred is bone thinning and eventual osteoporosis. If you opt to take it for more than 3 months be sure to INSIST on a baseline DEXA scan. Weight bearing exercises, sufficient calcium and vitamin D are IMPORTANT in staving off osteoporosis.
My computer says I need to upgrade my brain to be compatible with its new software.

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