Prednisone Tapering Advice?

[xX_LittleMissValentine_Xx]

Hey guys
Just a quick one I just wondered if u had any advice for me on this. Basically after my colonoscopy they suggested I came off the Pantasa. I have been on it since diagnosis (almost 2 years!) and I was on 3g a day. I know this is not a med that needs to be tapered like pred, but to me it still makes sense to come off it gradually. I mean, if your body is used to getting something regularly and it suddenly doesn't it will be a shock right? So I went down to 2g a day for two weeks then 1g a day for two weeks. Last night was my first night of not having any. Do you think I should go to one every other day or just stop now? I guess I'm scared of coming off it coz it works so well for me. I'm fairly good atm and rly dnt want to flare. But I dont want to prolong it unnecessarily. Any of your thoughts would be much appreciated

Update: Post 14

x x x x x

 

[Peaches]

Did you tell them that you feel like it works well for you? I'm just wondering why they would want you to come off of it if it was working? If you tapered off that slow - I doubt it would be bad at this point to just stop. It is like aspirin for you gut was what I was told - so it wouldn't have the same effect as a pred taper. Do you feel any different since you have tapered off to this dose?

 

[Crohn's 35]

Yeah my theory, if it ain't broke dont fix it?? I never realized Pentasa was supposed to be tapered off. I am on it now and about the 5th time.

 

[xX_LittleMissValentine_Xx]

Pen, no it isnt supposed to be but i decided to. In my mind it makes it easier for my stomach. Also because a week or two before they told me to come off it my sisters doctors didnt mention that she needed to taper and she got withdrawals so my mum wanted me to take it slowly.
And peaches, I was still slightly dazed from sedation so I didnt rly put up much of an argument! I think as I'm well they want to see if I can manage on less meds. But I agree its silly. It like they have to be doing something. Its annoying for me coz I just wanna be well and get on with things not have to mess around with meds still.
x x x x x

 

[Peaches]

I...hear....you with the getting on with things!! :O) If the Aza is doing its thing - hopefully you won't need the Pentasa. And I agree....less is better. Hope you do ok without it!

 

[xX_LittleMissValentine_Xx]

Thanks so far so good so I'm keeping my fingers crossed and trying to be positive about it! We will have to see how it goes. x x x x

 

[imisspopcorn]

Good luck Holly...For years I was only on Asacol. One time my refills ran out. I did start to become symptomatic....Keep a close eye on it.

 

[farm]

I've been on and off Pentasa for 16 years now. Please taper this med and good luck to you!!

 

[violetcreams]

Good luck Holly - it sounds like you're doing really well!! I think for your own peace of mind it might be good to take one every other day for a week or so. xx

 

[Creepy Lurker]

Are you having issues with the Pentasa? If not, just ask to stay on it. It's pretty common to be used for long term maintenance.

 

[rygon]

maybe worth taking a diary of how each day goes, that way if you do feel worse any day then at least you have something to go back to the docs with. Its all well and good thinking i feel cr@p today/this week when i see the doc next i'll tell him, but ive found out by then youve forgotten when and how u felt like that.
Personally I'd give it a go stopping it straight away.. you can always go back on to it if you feel the need (but thats what i'd do cos im like that). See if you can get a 10min phone call with your doc or maybe an appointment to voice your worries...thats what he/she's there for and if you do have any doubts its better to get them off your chest rather than worrying about them xx

 

[xX_LittleMissValentine_Xx]

Thanks for the advise, I have stopped to see what happens and so far so good, but i reckon it will take a little while for anything to happen anyway. Fingers crossed!
x x x x

 

[Crohn's 35]

I have never tapered on Pentasa, I am on them too (when i remember, bad with taking ALL my meds, yeah I have a daily pill reminder, if I use it lol) I have never had problems with just stopping. A few docs would say just stop and I did with no problems. However everyone is different. Makes sense to wean off any drug as long as you are on another one. Good luck!

 

[xX_LittleMissValentine_Xx]

Hey everyone just thought I would update u all
I stopped taking the pentasa two weeks ago now and I'm still feeling well. I think My stomach is a little bit more grumbly and uncomfortable. But it is no way as bad as I thought it might be. I'm not in any pain. Even with all the stress I've had from the break up.
So its all good so far! How long does it usually take to notice a difference? Should I be starting to celebrate or expecting to go down hill from now?
x x x x

 

[imisspopcorn]

Just stay positive Holly.....

 

[gibby]

i dont know hun, i have remained on pentasa for all my disease life, thats 19years, and they have never thought about stopping it, i had been started on aza too but they wanted me off that first before they tackled the pentasa, but now turns out neither are working anymore anyway so i am looking at going on completely new meds....

....but i reckon every gastro has their own ideas and theories and it hopefully works for you! its a bit of a hit and miss disease we all have, notice it more here than anywhere, everyone is different and what doesnt work for some may be just the right treatment for others....hope you stay well hun!

i wouldnt worry about your symptoms coming back...the more you worry the more likely you are to get sick again! relax and enjoy the feeling of being on less meds....hope all goes well!