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Has anyone said no to prednisone

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Crohn's Disease
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Posted 9/18/2010 12:10 AM (GMT 0)
I have been on prednisone so much, and have such bad side effects, with no real relief from useing it....I decided to say no more...at least for now.

I'm looking at my 2nd resection at anytime, and know they will put me on it in the hospital...But for now. I don't want to take it.

I wonder how you all feel about this.
Posted 9/18/2010 12:13 AM (GMT 0)
If Prednisone doesn't do anything for you and won't forestall the 2nd resection, I see absolutely no point in taking it.

I have taken a few courses of Prednisone (and one of Entocort), but each time the relief has been very short lived and the symptoms returned as soon as I tapered down from the highest dose. In the future I will refuse steroids as I don't see the point of risking any more damage from steroids for such little relief.
Posted 9/18/2010 2:31 AM (GMT 0)
I decline to take it all the time. I actually just got out of the hospital yesterday for another obstruction. It was my eighth in just over a year and I am also waiting on my 2nd resection. I tell them every time, and I also tell any new Dr I might see, that I would rather not take prednisone. I mean if it was really a life and death type of situation it would be different but there are other options. Talk to you Dr about your concerns and options. I personally am on Entercort instead, along with Humira.
Posted 9/18/2010 4:27 AM (GMT 0)
I have a prescription for prednisone waiting for me at my pharmacy as we speak. I currently suffer from ulcerative colitis and am about to have an MRI to see if I have crohn's as well. Even though I am the midst of a major UC flare right now and my doctor has prescribed the prednisone, I REALLY don't want to go on it. The meds I am now taking are starting to work, so unless I go in the complete opposite direction, I am not going to take it. I am sure my doctor won't understand this decision, but I believe it's one thing for doctor's to understand different diseases, but it's quite another for them to actually experience the symptoms we have and the choices we have to make for our bodies.
Posted 9/18/2010 6:43 AM (GMT 0)
I am on 20mg of prednisone.  I just had it upped 10mg from 10mg two days ago.

I know side offects can occur etc. But my version is so horrible I can't walk without the prednisone.  I have tried many lower cost meds with no help and am on my way to more expensive ones.

If it doesn't work for you, then you shouldn't be on it.  But if it does, don't worry about the side effects unless they cause horrible damage or problems you can't live with.

When I first got sick, i was worried about side effects.  But it has been over 5yrs now and I really don't care.  I just want to get around again.  I have been bed ridden etc. and am tired of my bed room.

I know many aren't like me, but you have to think, do you want to be sick or have small side effects for the rest of your life.

It's not easy.  Took me a while to finally not care, I just feel like "load me up".

Posted 9/18/2010 8:17 AM (GMT 0)
Prednisone has done more damage to my body than Crohn's disease. I was on it at such a high dose for such a long time(a bad G.I.) that I ended up with osteoporosis, major deficiencies, huge weight gain, and a jaw infection that required surgery to remove a tooth and some jaw bone. That surgery eventually lead to a MRSA staph infection and I am still trying to get back on my feet from it 1 1/2 years later. So to say that I hate prednisone is an understatement. Prednisone tried to make a redneck out of me by taking one of my teeth and I am lucky that it was one in the back that can't be seen but I am holding on to the rest.
Before everyone jumps on my case, I do see and understand the good things that Prednisone does and do not want anyone not to use it just because of my experience. I do on the other hand, want people to be smart about when they use it. I think that many doctors prescribe it out like candy to solve a quick problem and then leave their patients on it too long and too often. It does have it's place in helping stop flares but I feel that a doctor should use it only during major flares or when someone is first diagnosed and looking for a maintenance medication. I am barely 31 years old and it is embarassing to know as a guy that I already have osteoporosis. I have to still take 50,000 unit vitamin D pills weekly and 3,000 daily just to get back to where I am supposed to be. My advice is take it when absolutely needed. If it were me and I knew that a resection is absolutely going to happen, I would get the surgery over with and then use the prednisone if needed after the surgery.
Posted 9/18/2010 8:55 AM (GMT 0)
Life and death = yes

Short of that = no

perhaps you could try a couple weeks stint of exclusive enteral nutrition - boost or ensure or a prescription formula.

it might give you some relief, improve your nutritional status before you have surgery and let you avoid pred all at once!
Posted 9/22/2010 10:22 PM (GMT 0)
Thanks...It's great to know that I'm not alone on this...I worry anytime I don't do what the Dr. says..I don't want to make him mad..But I've got to stand up on this one.
Posted 9/22/2010 10:50 PM (GMT 0)
I had to find a new GI and I told him upfront that I will not take Prednisone. Besides the physical side effects, it makes me crazy! I don't mean a little mood swing here and there either. Crazy! He had no problem not prescribing it for me. Maybe it was the crazy look in my eyes when I talk about it or my husband sitting next to me nodding his head in agreement. I don't know. But, I think if you have a good doctor they will listen and try to do what is best for you. Anyway, that's my two cents for the day. :) Good luck!
Posted 9/22/2010 11:52 PM (GMT 0)
Pred hates me. It makes me crazy also. Sleepless, eruptive rage, disconnected, ... Even though it made my gut better I told the GI that I will not take it anymore and now I am on Entrocort. And only 6mg instead of the 40 mg I was on Pred.
Posted 9/23/2010 1:22 AM (GMT 0)
I agree with some of the others. Only if there is NO other option and life and death. My rheumatologist put me on it and I weaned myself off. It made me very depressed and wasn't working on the 5 mg maintenance dose, so I quit and am getting another rheumatologist next week.
Posted 9/23/2010 4:09 AM (GMT 0)
For the time being I am refusing it. If I end up in the hospital than I wouldn't decline it. I was on it for a year and have permanent issues from it. I will only use it as a last resort. My dr knows this too and is ok with it. :)
Posted 9/23/2010 5:35 AM (GMT 0)
look into elemental formulas (ie Peptamen OS) --> supposed to be as effective as pred for crohn's, might take longer to work though
Posted 9/23/2010 2:25 PM (GMT 0)
I would try entocort over the pred 'cause it seems to be better with the side effects.

I have a love/hate relationship with the Pred (though mostly hate). It's made my life a living hell, but sometimes it made me from being so overly sick to feeling so much better. I know someone who was on it, under 30 and ending up needing two hip replacements because of the damage from the steroids.

Like everyone else said, if its life or death do it. For me, I've found it frustrating this year. Docs will put me on it for a relatively short term, then take me off, and it was one big tease. Oh! I'm feeling better! Oh wait, just kidding, it was just a steroid high. I'm still ridiculously sick. The GI that I have now seems to be on the same wavelength as me and isn't a fan of prednisone so I haven't had to "refuse" it ately as much as we both agree we don't want me on it right now.
Posted 9/24/2010 11:40 PM (GMT 0)
I have refused it after taking it a few times. It does absolutely nothing for me and the side effects are awful. Plus, diabetes runs in my family and prednisone can cause type 2 diabetes. Sending you good thoughts for your resection.
Posted 9/25/2010 3:40 PM (GMT 0)
I would say no if I had to take it today.
And I have told my GI that pred is not a option in the future.

I took it once for a week because my hands had swollen up from allergic reaction.

But I was on high does of pred for almost 6 months that will do for life I think.
Posted 9/26/2010 2:19 PM (GMT 0)
It would depend on what the alternative was. I have had the same GI for 30 years and we discuss my options and make choices together. When he retires, I will be hooped! I think it also depends if there is anything else out there to help your symptoms - I would take pred over pain from a partial blockage anyday.

Julia
Posted 9/26/2010 7:42 PM (GMT 0)
I refuse to have pred and take, budeonside instead, for me it doesnt seem to have the same side effects
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