Another Prednisone Taper Question

Julie, I would imagine that the GI will ask you to begin tapering soon. It sounds like his condition is pretty stable at this point. I find that for me, I taper when I feel like I am ready, it is hard for a doctor to put a date on tapering. I was initially on a 10mg a week taper and it failed for me. 5mg a week - every 10 days worked a lot better. I did go a bit faster earlier on in the course but by 15mg, I had to go even slower. Is he starting any medication to help keep him from flaring up? I was unable to taper off without adding 6mp.

You can't use cortifoam indefinitely and you should taper off. I used it for quite a while when I was decreasing my dose of prednisone and it helped keep things stable when I was at my worst. I don't think I tapered off because I was stable from the prednisone but in most cases, I do think a slow taper off cortifoam is probably best. You can switch to doing it every other night for a week or two, then every 2 nights. Try using Rowasa/Canasa on the off nights and eventually, hopefully, he can maintain with Rowasa.

keylime, I am so sorry he is having trouble but it does sound like he is doing his best to get into remission. It amazes me how young people with this disease are able to adapt and manage the condition. I hope things remain stable for him throughout college and into the future. I have never heard of Azasan. Why did the GI choose Imuran for him and 6mp for your daughter? I am on 6mp and my blood counts keep dropping too low, I wonder if Imuran would be a better choice? I think stopping cortifoam is probably a good idea if he is stable now, he can always use it as he decreases the dose if he needs to.

I got stretch marks and gained weight from pred. I am still trying to get rid of some of the weight :(

When my husband was on the prednisone and the first time it helped it was a short stint.  The next few times however the taper was too fast.  It was the advice I got on here about a longggggggggggggggg slow taper so I insisted with his doctor that be the regimine we followed and it worked in that he successfully tapered off it at that time but never went into a remission.  Symptoms were less and he just found a way to live with it and cope with it for the time being. We were taping at 5 mg doses and once he got to 20 we went to 17 1/2, 15, 12 1/2 etc based on the advice here and it really helped.

Due to all the side effects and his steroid dependency and difficulty getting off it, he never went back on it.  For 3 years he managed the best he could with the various meds - cortifoam, rowasa and the last resort of remicade which did not help him.  Unfortunately his case just never went into remission and after 5-6 years of it he had had enough.

Hopefully a long slow taper will not only help him get off it successfully but also be successful in providing some long term relief in the process.

Yes Julie just make sure he tapers sllllloooooowwwwlllllyyyyyyy...or it will come back and bite him in the
a@#...
It took us almost 3 months to taper off 40mg...but dd tolerated it very well and did not have any setbacks coming off.
It sure is hard to go slow but in my ecperience it works to go slow!
It does sound like he is ready to start decreasing though!
Good Luck!

Hi Julie, I can't remember.... has he tried benefiber or metamucil or the like? When my son had a mini-flare last spring, the GI nurse (with whom I am completely impressed) recommended he try it, a tiny bit at first - and even my son, who doesn't comment on much of this, said he was really impressed with how it firmed up the stool.

And - yes, Rowasa can make the stool looser.

Hi Julie - One thing I've learned about this disease, "never say never." I have not found the fiber to cause cramping, and in fact I use more when I'm flaring..... and I have discomfort passing stools when I am not on it.

But we're all different.

I find the packaged fiber easier on me than food fiber.
I tried the Walmart brand once for myself once on a trip and it didn't help at all - maybe the capsule coating didn't dissolve, or the fiber wasn't ground up enough.....who knows. I've stuck to the brand name since then.

I started my son on ONE capsule of metamucil a day - and after a week we went up to 2. And that's what he takes. I'm sure he could benefit from a few more (the jar says 5 capsules for a dose) but.... I know what you mean about the teen and attitude and pills.

It was my GI that had recommended it to me, and my son's GI nurse who recommended it for him, if that helps you in convincing him to try it.

Keep us posted! Good luck, I empathize.

Well the doctors office just called with taper instructions and they want him to drop to 30 for 5 days then 20 for 5 days and then 10 for five day. I think that is WAY TOO QUICK!!!

They seem to use bleeding as the only determining factor, but he still has 2-3 semi formed/loose bms per day. I feel like he will certainly backslide if we taper that quickly.

I tried to tell the nurse that we had never tapered that quickly when he was in a flare of this type, but she insisted!

Ugh - do you ever disobey the doctor and do it your own way? I was thinking dropping to 30 for a week and then by 5mg per week from there depending on how things go...

I'm worried now!!

I wouldn't rush. The doctors seem to think there is a standard that everyone can follow but it doesn't seem to work for the majority. I think you really have to go with his perception of his symptoms. If you feel unstable, wait a day to taper, or taper in smaller doses.

colitis, I did that same exact taper and I relapsed at 2.5mg and had to go up to 15mg, the relapse just got worse and worse, until it was a full blown flare up. I had to go back up to 40mg and taper slower. I was able to get down to 15 or 20mg quickly but after that, I was going at 2.5mg every 10 days or slower.

I don't see how it is possible that your GI has never seen a person experience a setback. He must not have a lot of patients with severe UC. Has he ever had a patient need surgery?