10th week on Pred

Hello again,

Ok so I went to see my GI yesterday as it was my last week of tapering my Pred i'm currently at 5mg. I told him that I had not reduced my asacol as he has suggested to 2.4mg but had stayed at 4.8mg to which he replied that was fine. THANK YOU ALL FOR THE ADVICE!

I have been on a real roller-coaster ride of emotions and am feeling very flat at present not sure if it is the pred.

After talking to him he told me that my uc has spread to my whole colon, Pan-Colitis, as I already new but I think this made me feel a bit low as well.

I have still only been having between one or two BM a Day no urgency or blood but stools are not always formed a bit of D and loose stools. Seems to have only been the last week since on 5mg of pred still at 4.8mg of asacol.

After some of the conversations on here I suggested to him that perhaps I do one more week on 5mg then taper to 2.5mg of pred and leave the asacol as is. to which he replied ok.

I asked about doing a foam enema maybe once a week but he said it was not worth it?? I have some at home.

Is it normal for you body to adjust ie BM as you tapper the pred, I have had formed stools once a day since starting nearly every day until the last two weeks at 10mg then 5mg still ok for the most part but a few dodgy days. including today loose stools.

He has made an appointment for me to go back in 3months to see how things are and if symptoms have returned he was talking about maybe starting me on Azathioprine i'm not sure what to thinkof this..

Any advice would be greatly recieved

Maybe I misread something but didn't you say you were getting better than before and yet the doc says your disease has become worse to pancolitis? How does he know this? I'm a little confused. You're doing pretty darn good for someone that has pancolitis.

I probably have no right to say that I feel down compared to how I have felt in the past or some peoples symptoms on here and for that I apologise.

I don't know what is wrong with me I should be feeling up beat and positive just some times the realisation of things and how bad things could get just hit home every now and then.

As where I should be taking and enjoying one day at a time.

Like I said perhaps its my body and bowless adjusting to coming of the pred I don't know.

is this normal?

I actually never understood the max dose of 4.8 since it is a relatively safe non-systemic drug. I wonder how many people have actually taken more than 4.8 and if it helped at all?

Bez73 said...
I have been on a real roller-coaster ride of emotions and am feeling very flat at present not sure if it is the pred

Could be as pred is known to mess with one's emotions.

Bez73 said...
Is it normal for you body to adjust ie BM as you tapper the pred?

Yes, you can have withdrawal from pred as you taper which can make your uc symptoms worse (looser stools is one of those). However, your body should re-adjust a week or two after you've dropped your pred dosage. If it does not, then that's a red flag that either you are tapering off pred too fast, or you cannot maintain your current uc quality of life without pred (prednisone dependence which is bad). Dependence means your current uc medications are not strong enough to hold your quality of life where it needs to be, so you need more meds, stronger dosages of your current meds (if you haven't already reach the max), or both.

Bez73 said...
I asked about doing a foam enema maybe once a week but he said it was not worth it?? I have some at home.

You could try them, but your goal should be getting off steroids entirely. You do not want to use them as a maintenance-medication. Steroids loose effectiveness the more you use them. And steroids are dangerous to use longterm.

Bez73 said...
I do however have mesalamine suppositories but I was told that I can only use these once the asacol is reduced so that I do not go over the 4.8mg

I disagree. There's nothing wrong with being on 4.8grams a day of oral meslamine plus a 4g a day enema/suppository. Many people have done this, myself included. Much above that dosage is useless.

Bez73 said...
He has made an appointment for me to go back in 3months to see how things are and if symptoms have returned he was talking about maybe starting me on Azathioprine i'm not sure what to thinkof this..

Stronger uc meds might eventually be needed for you and they are nothing to be scared of. Whether you need them or not yet, I am not sure. I would do 4.8g a day of oral meslamine PLUS 4gs of meslamine enema before considering Aza. Aza has worked wonders for many.