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To Prednisone or not to Prednisone?

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Ulcerative Colitis
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Posted 5/10/2011 2:06 AM (GMT 0)
Any advice/insight would be helpful...

I was in a terrible flare until January when I became better, quite quickly. It was a great few months, but I've suddenly been thrown out of remission. I had a couple days of terrible bleeding and I haven't had fully formed, non-bloody stools in around two weeks now.

I called the GI who tested for CDiff, which was negative.

He wants me to start a 1 month course of Pred. 20 mg at 5mg taper/week. He said an enema wouldn't reach high enough for me (I am already on Canasa suppositories). Now, I was on Prednisone when I was first d/x and I just remember the awful side effects. Honestly, the moon face bothered me the most! But I was also on 30 mg and tapering at a slower rate (I think...my old GI wasn't able to tell me).

My bleeding has gone down but is still happening with most BMs, and the diarrhea has kept up. Do I see how things play or do I just bite the bullet and go on the Pred? Will the Pred serve me better in the long run?
Posted 5/10/2011 3:20 AM (GMT 0)
The dose is high but not excessive, it will probably help more in the acute stage (short term) give it a shot, it's only a month and a declining dose.

Be well.

Posted 5/10/2011 3:51 AM (GMT 0)
Thanks, bbc.

Does anyone know if Pred would still be effective at a starting does of 15mg?

I'm really quite well in the scheme of my UC--just a few loose BMs a day with some blood on the toilet paper. It hardly seems like a Prednisone situation and I'd love to try the mesalamine or steroid enemas, but my GI is refusing. Not sure how to negotiate this one...
Posted 5/10/2011 5:41 AM (GMT 0)
I did not know you haven't tried rectal meds yet, by all means try that first.
Posted 5/10/2011 5:41 AM (GMT 0)
Its a tough decision. If you try something else and it doesnt help, its possible that you can get worse but if you take the pred, you will be fine but you will experience some side effects. I think you should go with your gut feeling and im not talking about colitis symptoms lol

I am in the same exact situation. I have a brand new bottle of pred that I was told to start at 40mg(which I think is a little high) and taper down 5mg every week. I have progressed a bit without it so I am giving it a little more time because I want to take 3 classes this summer and when I get on pred, I cant seem to focus. If I end up taking it, I think I will start at 20 or 30mg, I just hope it works on that dose.
Posted 5/10/2011 7:01 AM (GMT 0)
To Prednisone or not to Prednisone?

Not.
Posted 5/10/2011 10:41 PM (GMT 0)
I'm frustrated by GI won't let me try enemas. I may call one more time and once again express my concerns and see if there is anything else to try first...

Thanks for all your advice!
Posted 5/10/2011 11:12 PM (GMT 0)
You're welcome; tell him/her that it is not only a reasonable request but it certainly can't hurt to try Rowasa for a few weeks first.

Best of luck.
Posted 5/11/2011 1:42 AM (GMT 0)
I don't get why everyone is so against Prednisone (for other people!)? It works great on me, and I don't get any side effects. Even if it doesn't work for one person, it might be perfect for someone else.
Posted 5/11/2011 2:30 AM (GMT 0)
I love prednisone but at the same time I hate it.. side effects hit me but the bottom line is it works.. I would love to be able to stay off it but right now its the only thing that keeps me up and able to go to work .. it works for some and not others so if it works for you ask yourself if the good out weighs the bad
Posted 5/11/2011 6:52 AM (GMT 0)
Refuse the prednisone and say you want to try the Rowasa or steroid enemas.

If he says that it doesn't reach high enough....say "it's not supposed to, and I want to give them a fair chance. If they're not successful, then I'll do the prednisone.

Your doc is a dork if he won't at least let you try them.

q
Posted 5/11/2011 11:33 AM (GMT 0)
Several times I have negotiated with my GI - "Let me try the enemas for 3 weeks first, and if they don't work I'll go on pred...." and each time they have worked and I've avoided the pred.

I've used steroid enemas when really bleeding - less systemic, side-effect-wise, than oral pred.
Posted 5/11/2011 12:38 PM (GMT 0)
I agree avoid the prednisone and give the enemas a try.  I cant believe that your doctor wont give them to you,  Do you have a family doctor that would write a script for you? 

 My GI is always pushing the enemas and personally I would rather use them then take a handful of pills daily.  I was only told   to take prednisone once in the 17years that I had colitis and even then I refused to take those pills.  The salofalk  and hycort enemas  along with Salofalk pills have always worked even with the worst of my flares.

For me the long term effects of taking prednisone is not worth its benefits. 

Posted 5/11/2011 1:29 PM (GMT 0)
Thank you for the support! This encouraged me to give my GI a call. I had a formed BM this morning (still some blood but not as bad) and I'm feeling better every day, so I left a message noting this and saying I at least need a few more days to see how things go. I could have been more aggressive in asking for the enemas, but hopefully when the nurse comes back I can negotiate a bit more.
Posted 5/11/2011 5:48 PM (GMT 0)
So, my GI is still refusing to let me try the enemas...frustrating, but not sure what else to do except continue the suppositories and hope things start getting better. He is aware I'm holding off on the prednisone until I see how I'm doing.
Posted 5/11/2011 7:00 PM (GMT 0)
I agree with Quincy, your doc is a dork. This may be a blessing in disguise that informs that you need a new doctor.
Posted 5/11/2011 8:12 PM (GMT 0)
What is your physicians exact reason(s) for not allowing you to try them?
Posted 5/11/2011 8:13 PM (GMT 0)
bbc--He did not believe the enema would "reach high enough," I guess to where he believes my inflammation is...
Posted 5/11/2011 8:20 PM (GMT 0)
15 mg can be somewhat affective if its not a serious flare. I would keep pushing for what you believe is best for you though. Have you recently had a colonoscopy? How does your GI dr know "how high" it is? I would try negotiating some more. I've had the same problem with my GI doctors in the past and sometimes I felt that it was due to my age that they wouldn't budge on their decisions. I'd also try having your family dr write you a script for the enemas. I go to an internists group and they're great about getting me enemas to help out here and there.
Posted 5/11/2011 9:15 PM (GMT 0)

mkl11 said...
bbc--He did not believe the enema would "reach high enough," I guess to where he believes my inflammation is...

That makes sense so I wouldn't be so quick to fire him although it would still be nice to give the enema a try
Posted 5/12/2011 1:59 AM (GMT 0)
No it doesn't make sense...the enemas will treat up to the entire sigmoid. The oral meds take care of the rest.

The doc is a dork x all the enemas I've used in 22 years.

My doctor can't believe there are GIs out there who refuse to prescribe them and still use the excuse about them not reaching high enough.

sheesh.

q
Posted 5/12/2011 6:16 PM (GMT 0)
Yeah, quincy, I agree. But I've been very happy with him until this point. Good news is I had a formed BM this morning with no blood! So (knock on wood) things seem to be getting better on their own.
Posted 5/12/2011 6:22 PM (GMT 0)
Definitely promising. Good to hear.

Are you taking any fibre supplements?

probiotics?

q
Posted 5/13/2011 2:44 AM (GMT 0)
Have you tried LDN (Low Dose Naltrexone)?

I have had all of the drugs, including enemas, right up to one treatment of Remicade, which I should never have done as the bleeding stopped 2 days prior to the scheduled treatment. I am in remission since Thanksgiving last year. Was on Prednisone, awful chemical. Weaned myself off of it before my doctor agreed, used Sam E to help with this. I was nearing the point of surgery when I went to a homeopath as a last resort before choosing surgery and found out about Naltrexone. He told me it might take over a month to see any results. He started me on 1mg per night and upped it to 2mg after 1 month. He was right when he said it would be over 1 month it was about 6 weeks. When I first went to see him I told him what was up and he handed me a piece of paper to read about this drug, telling me to read it right then and there as it was going to read and sound like "snake oil".

I had severe bleeding with every trip to the bathroom for 1.5 years before this stopped.

Currently 2mg per night. Have stopped all other medication. Couple of shots of Aloe Vera juice per week. 3-4 tabs of probiotics per week. 4 shots of kefir per week. I do not take anything daily except the LDN. From 20+ trips to the bathroom per day to one or two. It was so bad I even had a hemorrhoid pain killer salve.

If you can avoid the Prednisone do so.

60 year old male overweight with diabetes (no meds for this as I have been loosing weight controlling it with diet)
Posted 5/13/2011 8:07 PM (GMT 0)
Quincy: No fiber, but perhaps I should work that in. I just upped from 2 to 3 capsules/day of VSL #3.

Colgone: So glad you found something that worked! I hope the LDN continues to work for you. Fortunately, I've now had several fully formed, blood free BMs in the past few days so I think I'm doing better. So glad I went with my gut and refused the pred.
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