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Can prednisone change to course of your disease?

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Crohn's Disease
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Posted 10/26/2007 3:55 AM (GMT 0)
I am so confused about things.  My diarrhea is still constant and has not let up since the day I was diagnosed with Crohns.  I am going about 8x a day.  I am on entocort and pentasa and clearly there needs to be another drug added.  We talked about a short course of pred but will that do the trick if this inflammation is still so constant?  My GI said he doesn't like to use steroids (even though I am on entocort) because he believes it changes the course of your disease.  I think he was saying that it makes it tough to get off of.  Has anyone had luck with a short course of steroids get their diarrhea and inflammation under control and then off of the pred without it all coming back??

I am not sure what else to do at this point.  I am so sick of d though!! This has been over 14 months total of it.  I am worried if the darn inflammation ever goes away how much scar tissue will be there and other things.  I hate this disease!!!

Chris

Posted 10/26/2007 4:19 AM (GMT 0)
I have had D for 40 yrs, and that was when I had my first resection for crohn's. I always blamed it on the fact my ileocecal valve was removed along with a foot of ileum. I saw a GI in Mass about 12 yrs ago, and he told me that with meds and proper diet, I could control it. I assumed he was talking about lomotil, imodium and metamucil type meds, which have never agreed with me. Blow up like a balloon. But a few folks here have had great success with very restrictive diets. I am not that disciplined or desperate yet, but am heading that way.
Posted 10/26/2007 1:38 PM (GMT 0)
Yes I am one who can take a short course of Pred to get things under control. Sometimes the Entocort just doesn't do it for some folks. Although it is one of the meds you hate taking, it does work well to tamp down the inflammation. Sure hope you get feeling better soon.
Posted 10/26/2007 2:46 PM (GMT 0)

Hello there,

My hubby has been on Prednisone several times for the inflammation and it has helped him.  He has had 3 resections and is well controlled at this time.

I know this sounds really "weird" but the man is a hunter and his diet consists of vension as his protein . He always has it ground like hamburger without any added meat to it. Hey guys, I know it sounds wild LOL but for him it works.

He never eats any stringy kind of meat or rich foods.

Just my 2 cents.

Posted 10/31/2007 12:33 PM (GMT 0)

 

I do not have chrohn's but know friends with it and also had patients with it when i worked as a RN.  Prednisone

can be a helpful drug and chrohn's suffers have range from mild to really severe.  Remicade also seems to help I hear it 

is expensive (this is an IV therapy).  I always think if 1 Dr. isn't helping seek other help: another DR,specialist whatever

it takes.  Hope you get some relief soon 

Posted 10/31/2007 12:44 PM (GMT 0)
It used to be the only option to get inflammation under control, and a lot of the patients became steroid dependent, on the drug for years at a time. It does work for some people, but look at the number of older patients with multiple surgeries and/or side effects from the steroids.

Thankfully, we have other drugs now for long term if they don't work for you right away. Try the steroids, if you are unable to taper without the symptoms coming back then you opt for the next tier of drugs.

I don't think the steroids change the course of the disease, I think the disease changes, isn't controlled well, and then we have to go to bigger and bigger guns.
Posted 10/31/2007 2:45 PM (GMT 0)

Hi Chris,

I am sorry you are having such a hard time with all this!  You may not like my suggestion though....

Try the 'lofflex' diet.  It takes all grains away but rice (the grain we have been eating for the longest time and our bodies seem to handle the best)  It takes a few days getting use to it, but so far I have used it for flare ups and it has helped without the need for meds.  I find that while I am on this diet I am PAIN FREE which is great, but I can't live on the diet (or don't want to anyway)  You can find it by typing lofflex into google.

It was created by the Cambridge University team that deals with Crohn's.  What can it hurt? If it gets rid of your D, then it is worth it.

I think I forgot what a 'normal' bm is!

All the best,

Amy

Posted 10/31/2007 3:57 PM (GMT 0)
Steroids do not heal they only mask symptoms. You feel better on steroids but, unless another process is at work to dampen down the disease activity, the steroids alone do not get at the underlying disease.
Posted 10/31/2007 4:52 PM (GMT 0)
Hi Chris,

If you are on Entocort, then you are already on a steroid. How long have you been on the Entocort? The Pentasa? Daily doses of each?

(The full dose of Entocort is 9 mg, and the most effective dose of Pentasa is 1 gram, 4 times a day.)

If you have been on them for months and they haven't helped so far, then they are probably not going to work for you.

Unless you are willing to try unconventional therapy like LDN, you might need a short course of prednisone to nip the inflammation in the bud and then buy you time while more effective meds, like azathioprine, kick in.   

It's not correct to say, flat out, that steroids (Entocort, for instance) do not cause healing, because not a single published clinical trial has proven this.  The best we can say is that we don't know whether a steroid like Entocort can cause healing because no clinical trial has proven that it does. And it is certainly fair to say many of us suspect it doesn't. It is also not correct to say, definitively, about steroids that "they only mask symptoms." For instance, a steroid does not just mask inflammation - it can reduce or eliminate it. But does it stop Crohn's dead in its tracks. We don't know, for sure, but many of us suspect it doesn't. 

Azathioprine, on the other hand, HAS been proven to cause healing.

Posted 10/31/2007 5:08 PM (GMT 0)
njmom is right, entocort is a steriod, however not a harcore drug like pred

I was on pentasa 3000mg a day, it helped me somehwat, from DX to Feb 2007 I only had D once every 3 weeks, then was put on entocort 9mg day, from there I was symptom free from Feb 2007 - June 2007, and it came back every 3 weeks again, then in Sept 2007 I was getting D every other day. I was put on pred 40mg and it stopped it, I had one incident in the last 4 weeks, but it could've been the food as my whole family got sick the next day too. I still have slight pain, and the side effects from the pred kicked in after day 4. I was told after 7 days your body starts to shut down your steroid glands and you work on the pills from there. I've been taping (down 2.5mg a week, now at 35mg) and I feel bone pain, headaches, and can't sleep when I do it. BUT, in the long run it does help, it's worth a shot, it's better than having D 6-8 times a day trust me.

If it doesn't help short term Humira or Remicade might be your option as it sounds you need help now and want it over with. These two drugs do wonders for people and control it. Side effects are always possible, don't be scared of them but the cost of the drugs might scare you if you don't have a good health plan. Good luck! :)
Posted 10/31/2007 6:48 PM (GMT 0)
how long does it take for the prednisone to work?????my son 17, newly diagnosed was brought to emergency sept 27 and started on prednisone 40 and had 3 blood transfusions. he has continued to have the same problems, nothing is really better. was in hospital 2 weeks and came home on prednisone pills. tomorrow we start weaning off, but still 6-8 painful bm's with blood.
Posted 11/2/2007 5:18 PM (GMT 0)
I do not have Crohn's disease, but thought I should give another slant to prednisone.  I took it in high doses (starting at 40 mg) for several weeks for uveitis and other eye inflammation.  It made me telmporarily "psychotic", gave me thrush and yeast infection throughout the body, and didn't knock out the inflammation.  But the worst thing is that it rendered me Type 2 Diabetic, which I have been dealing with now for ten years, and THAT will never go away.  Doctor did not tell me about these side effects.  As with any medication we take, it seems like WE as human beings must look out for ourselves and weigh the consequences with the actions.  My recommendation is to use FULL CAUTION before taking prednisone.  I certainly will not take it ever again if I can help it.  It can be the miracle you need, but it also might have some nasty, lasting side effects...
Posted 11/2/2007 6:55 PM (GMT 0)
Hi Chris,

I have, unfortunately, been on prednisone for 4 years now. I started out on Entocort, and then it wasn't working as well as it should have....prednisone was added for what was supposed to be a short time, but every time I'd try to get off of it, I'd start getting sick again. Now, after all these years, not only can I not get lower than 5mg without getting ill, but I now have to see an endocrinologist to determine whether or not my adrenal glands are still alive and if they can be awoken and start working again with the help of other medication. I believe I have a permanant moonface, the upper abdominal fat will never go away, I have a hump on my back, just below my neck, which is very sore and ugly, I have borderline osteoporosis at 30 years old, night sweats, weakness, etc. I wish I had never started this drug....it's wonderful that it can help get the inflammation under control, but at what cost? If I can ever get off of it, I will never take it again. It has ruined my body.

Good luck to you, I hope you can find something else to get you through besides the prednisone.
Posted 11/3/2007 3:17 PM (GMT 0)
When I first was diagnosed with Crohn's, My GI started me on 40mg prednisone. Within a week, the severe diarhea I was experiencing diminished greatly. I went from being constantly living in either bed or the toilet to just making a few trips a day to the toilet. I had lost over 10% of my body weight(160 lbs down to 140lbs in a month) before I stabilized after starting on prednisone. So I guess you could say that it helped me immensely. I hated the side effects which for me included night sweats, insomnia, muscle cramps in hands, dizziness, confusion, difficulty speaking and maintaining a thought without having my mind wander, and personality and mood changes. But it worked. The bleeding was reduced, my appetite returned, my weight loss stopped. Fortunately after I was weaned off of the prednisone and started on pentasa(4000mg/day-reduced to 2000mg/day due to migraine side effects at higher dose), I have more or less stayed in remission(I think). But everyone is different and what helps one person may not work for another. Hope this info helps and I don't sound like I'm rambling on(1st post and all)
Good luck to you,

Bob

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