Quincy, questions anyone

Went to dr. yesterday. I am tapering the Pred from 20 to 15 mg. for 5 days then using my own judgement on the mg. from there on to taper down till off pred. I intend to do this very slowly. But...

He then wants me to wait a week and just STOP the canasa. He said I don't have to taper.

He only wants me on asacol.

I asked him about treating both ends and he said he didn't think it was neccessary.

He thinks the pills will take care of it. I am afraid they won't.

Now I was only on asacol before and to be honest I was only taking 2 pills in the morning...I know how stupid of me.

I don't intend to just stop the canasa. But, how should I taper?

Is it every other day for a week then every 2 days? What is a maintaince dose?

This flare was really bad. Of course It is my fault...I haven't had a flare for the last 5 years and I just didn't think until it was bad...never again.

I let it go almost 9 months or more. How stupid of me. That WON'T happen again.

I never get sick and I didn't think I was "sick" then. It threw me when the dr. asked me how long had I been "sick", I guess I just didn't think I was "sick".

 

My GI doesn't believe in tapering rectal meds either (except Colocort) but I learned the hard way that I have to or I will start flaring again. I think you should listen to your body. Taper if you feel that is best and just keep an eye on your symptoms. I agree that we probably have all tested our limits with this disease. We need to live and learn from our mistakes is all.

Tell your doc that you respectfully disagree about tapering the Canasa and you would appreciate having enough refills to do as your body needs.

Taper from nightly to every other night - when you're stable there taper to every third night, etc.

Yes, we've all played with our meds or become complacient about taking them as we should. Berating ourselves doesn't help - pick up where you should be and go from there.

Good luck!

Thanks for all your input. After I get off pred, I will do the every other night for a week than so on. I am not sure if I will do none tho. Still question that. I just don't think the pills get far enough down to the rectum.
Still have questions on weather to stop or maintaince canasa.

My dr. did give me refills on everything. believe me I have a stash. I will never be out of meds again. As others have said pharmacys just DON'T stock these meds.
thanks.
Jan

Quincy, After I get completely off the Pred, I will wait a week, then taper the canasa. I will use canasa two nights on then one off. I will do that for a week then go to every other night. Then start to taper more.
My question is:

do I stay on a maintaince dose? What would that be?
Should I get off the canasa completly?
Should I try to get off the maintaince and see what happens?
I DON'T want another flare.

My dr. says it is up to me how I taper off the pred. He gave me some guidelines and said to listen to my body.
BUT he did say to get off the canasa. I don't think he will object to my experimenting...I am going to anyway...It is my body and I need to listen to it.
From what you said that might be a mistake to get off the canasa completly.

He did say that if I start to flare...I could always do another round of Pred....I don't think they (drs.) GET it!!!
I told him NO! I would do the cortifoam before that and any other butt meds.
He said, "the cortifoam didn't work last time"
I said, "I had a SEVERE flare", I don't intend to let it get that bad again before doing my meds. I also told him I had a stash of meds and I intended to use them BEFORE Pred.

He listened and didn't disagree...didn't agree either. He just said to listen to my body and call if I had any problems.
I think he is really leaving it up to me how I want to treat my butt.
If not It is going to be that way anyway. I really do think he will go along with anything I want to try.

I agree with you. Most drs. just prescribe pred as a first treatment. I DO like my dr. we do talk about the plan...I just think his first plan of attack is/WAS pred.
This time I did agree because I was so miserable and I NEEDED a quick fix. The next time hopefully it won't be so bad and I can get a handle on it and control it so it doesn't get bad enough for the dreaded pred.
He listened to my explainations of why I didn't think the cortifoam didn't work and did sorta agreed with me.
I also think most people do not take a pro-active stand in their own health, and just follow drs. orders without questioning them. He did commet that I had a lot of good questions and he thought I could handle the meds myself and if I needed or had questions to just call him anytime.
I think since he has never had UC himself...that he just doesn't know what most on here know.
I have learned SOOOOOOOOOO much from this web-site. To bad more drs. don't come here to get first hand knowledge of how this disease works.
I know schooling and all they go through to be the professional BUT...it doesn't account for first-hand knowledge.