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Would you start Prednisone if you felt fine?

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Posted 2/29/2008 8:30 PM (GMT 0)

I'm hoping you all can help me sort out my thoughts before I see my GI next week.  I have been feeling pretty good for the past year and a half or so, and have been taking Asacol for maintenance.  In November my life become very stressful and I've been very unhappy since then.  (I am trying to change that and deal with my stress better.)  That always affects my Crohn's (in fact it is the main thing that affects it), so I haven't been feeling my absolute best since then, but not bad.  I don't have any pain or bleeding.  I can eat and I have energy and I'm at a normal weight.  My main problem is constipation due to a stricture (which is old scar tissue from when I was first diagnosed).  I'm used to it and it's manageable and I try to be careful about not eating things that make it worse.  Overall, I feel good.  (I also follow the SCD which I feel helps keep my Crohn's under control.  I know it's still there, but I feel much better on this diet.)

In January I had a colonoscopy with biopsies and my GI is alarmed and says there is lots of active disease and ulcers in the biopsies.  She wants me to start Prednisone.  (I've never taken it before even though my doctors have always predicted that I would need to start it any day now.)

I have always considered Prednisone and the serious drugs a last resort and am very afraid of the side effects.  I would rather keep it for when I'm really sick, not start it when I basically feel fine (I realize there are arguments against this position).  My feeling is that my intestines will never be "normal."  But if I can get by with just Asacol, why get involved in all the steroid dependence and complications?  I'm going to have this disease for the rest of my life, so I feel like a little inflammation, as long as it's not negatively affecting my life, is something I can accept and live with.

What do you all think? 

Posted 2/29/2008 8:45 PM (GMT 0)
If there's lots of active disease and ulcers, you may not be feeling great much longer.  Even if you aren't noticing it right now, the inflammation is causing damage.  I can understand not wanting to get on the pred merry-go-round.  What about other medications?  Are there other maintenance meds that the GI would be willing to try in addition to the asacol?

Posted 2/29/2008 9:09 PM (GMT 0)
That makes sense, although it has now been almost six weeks since my scope (due to the crazy wait for appointments here) and if anything I think I am improving rather than worsening, probably due to taking better care of myself and reducing my stress.  I will certainly ask about alternate meds.  A separate issue is that I want to try to conceive, which seems to complicate everything. 

I need to find out if there are other tests that can be done to monitor the situation and possibly confirm my sense that I am getting better.  Aren't there blood tests that could at least give us some information to work with?  My doctor never seems to do those so I need to ask her about them.    

Posted 3/1/2008 3:29 AM (GMT 0)
Here's the thing. You already have a significant stricture -- enough that it altering what you can eat. If there is evidence of active crohn's then isn't it likely that every day you don't treat the inflammation/ulcerations you are one day closer to an obstruction or a perforation, abscess? Crohn's is a transmural disease. If left unchecked it eats away right through the thickness of the bowel wall. That's when fistulas or perforations occur, both very nasty complications. Over time and after many ulcers the scar tissue will probably close down your bowel.

This is exactly what happened to me -- twice. I rejected most medication and toughed it out. My thinking was that, I only had a mild case of crohn's so I should save the strong medication for "when I really needed it". Since my last surgery I am now considered to have severe disease. I am on disability, I have been told that surgery is no longer an option unless it is to save my life and I am relying on medications to slow down that inevitable process of inflammation and ulceration that will eventually shut down my bowel again.

If I had it to do over, I would take the medication that I rejected back then. I understand your fear of medication, but don't let your anxiety get in the way of the facts you are facing. Talk it out with your GI. Ask him what kind of crohn's he thinks you have -- inflammatory, fistulizing or stricturing. Ask him how the type of disease you have is likely to progress and why he believes medication is the best way to manage it. Ask whether steroids will actually promote any healing or whether it will just mask symptoms. Maybe a better approach would be to begin an immuno-suppressant drug. Since you are feeling well, you could avoid the steroids altogether, since you don't need them for symptom control while the immuno-suppressants kick in (usually about three months).

Big decisions, especially when you are still feeling well, but try to keep an open mind while you gather all the facts you need to make this decision.



If you were
Posted 3/1/2008 4:39 AM (GMT 0)
I agree with the above posts. Damage done is damage that can't be undone. But, I also wondered about the possibility of something other than steroids, like Remicade, AZA or 6-MP.

Best of luck!
Posted 3/1/2008 4:49 AM (GMT 0)
You might find interest in the post entitled "Small Study suggests top-down approach..."
Posted 3/1/2008 4:51 AM (GMT 0)
I concur with the others. I only have my stricture because I allowed the disease to go untreated too long.

Pred may not be the only option, but doing something to heal the inflammation and ulcers is important. It's not worth risking more damage.
Posted 3/1/2008 5:24 AM (GMT 0)
Pred is suppose to be used as a last resort when D is out of control for a period of time with no relief.

Not everyone gets strictures that has crohns...I've had active crohns for going on 17 yrs straight and have never had a stricture nor an abcess, nor a fistula...genetics are involved in the behavior and pattern of crohns disease...nothing's written in stone.

:)
Posted 3/1/2008 2:44 PM (GMT 0)
I agree that you definitely should be on something, but I think alternatives to prednisone should be tried first if you are not experiencing symptoms. Like others said -perhaps the doctor should consider immuran or 6-MP first (although they take a bit of time to build up in the body). I was unable to take most of the drugs for CD, so it was necessary to use way too much prednisone and I became dependant - it took remicade in combination to finally allow me to taper off the prednisone. The remicade had been working wonders for me.

Good luck, and I hope you continue to remain feeling well for a long time to come!!!

Bev
Posted 3/1/2008 4:03 PM (GMT 0)
Thanks everyone for your replies. It is really hard to adjust my thinking and accept that I will have to take the stronger drugs, probably have surgery for the stricture, and not be able to have a child for a while. But I suppose that there is no point in deferring things any longer.

I did read about the top-down study and will be curious to see what my GI says about this.

I would like to understand more why several of you mentioned that it would be better to look into other drugs besides prednisone. This is my intuitive sense but I don't know how to articulate this to my doctor. Is it because prednisone won't promote long-term healing? Or because there are drawbacks to taking it? Does one really become dependent on it? I will be searching the boards on this but if anyone has any thoughts I'd love to hear them. I feel so clueless since I've never taken any of these medications.
Posted 3/1/2008 7:37 PM (GMT 0)
Pred is used as a last resort because it has too many side effects (some short term and some long term depending on how long you're on it) which is why it's considered as more of a "booster" until maintenance drugs kick in (since for most of them it can take 3-6 months)...pred is also used for a break, when symptoms are just too out of control and maintenance drugs aren't quite cutting it or for those who cannot take maintenance drugs (like myself, either allergic or non-responsive) then going on pred from time to time is another way pred can be used but it's truly for when you're at your wits end and all eles fails, not if your in a mild or even moderate state would a good GI even bother a person with pred because of the many possible side effects and it's considered a heavy duty oral RX.

:)
Posted 3/1/2008 8:38 PM (GMT 0)
Wow, butterfat, thanks for posting this topic. It's pretty similar to what I'm going through. My GI is a very visual person, apparantly, and since he sees active disease when I have a scope, he thinks I need stronger drugs. But I feel good and I don't want to mess with drugs if I don't have to. I understand the concept that the disease can be doing damage, even if I don't have symptoms, but it's still a hard pill to swallow (haha!). I think what it comes down to for me is kind of a case of denial. I don't deny that I have the disease and that without treatment it will come back but... I just want to live my life and not have to worry about it for awhile, and being pretty symptom-free allows me to do that.

Fortunately for stubborn ol' me, my GI usually goes along with what I want to do, and so I'm just on Pentasa for maintenance, although he keeps pushing Humira on me and I keep saying "not now". You asked about monitoring for disease via blood tests- Currently I get my ESR/sed rate done every two months or so, and for me that's always been a pretty reliable indicator of general disease activity.

Honestly, in my situation, there is no way I would take prednisone right now. The side effects are just too much and would mess up my life at the moment. Your GI probably wants to start pred as a quick way to reduce the disease activity, but if you feel ok and don't want to go through with that evil stuff, don't do it. Like others have mentioned, I'd go for 6MP or Imuran if I were you. They are stronger drugs, but they have fewer acute side effects than pred. Or maybe even ask about Remicade or Humira, because many doctors are starting to think that it's better to use the "big guns" first, and the side effects of those can be minimal as well. According to my GI, those drugs are safer than the 6MP variety for pregnancy, but I know other people have had healthy pregnancies on immunosupressants, so it can depend.

Whatever you decide, good luck, and I hope you continue feeling well!
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