Question about Prednisone taper

I have been on 40 mg since 11/26/17. Had one unsuccessful attempt at seeming to 30, but currently just completed a week at 30mg and am doing well enough. I am only having one bm in the am though I am gassy in the evening and have just D for the bm. I called and asked if I should taper by 5 for the next step down and my GI apparently does it all in 10 mg increments per week. I have dealt with quite a bit of fatigue the last couple of days. What difficulties with a 10 mg taper would merit asking for a 5mg taper instead? I would really rather do that. I would probably just do it but I only have 20 mg tabs and not enough without a refil. On a side note, it drives me a bit nuts to call and talk to the nurse and have the doctor ask things like "have you started your Humira?"

The one other question I have is both times I have been hospitalized I have had low potassium and they have given me IV potassium. Would a clued in GI monitor my potassium on a regular basis? Also, I had low calcium both times, and nothing was done about that. No one even said to take calcium supplements. I am taking a calcium magnesium vitamin d boron supplement. I realized yesterday that none of my supplements have magnesium, so I may need to get that.

You can cut pred tablets into haves and even quarters. I've done that for drops with/without doctors permission before. Smaller drops are always best!

I start Entyvio January 12. I had tried to break the pills in quarters before and it seemed hard to get them right, but I suppose it doesn't have to be perfect. I just sat down and counted out what I have left and I have just enough of the 20 mg pills to taper by 5 mg from here to 0.

This might be a silly question, but if I am not really flaring now, will it be bad to go on the Entyvio? I suppose that might be hard to even determine considering I am still on 30 mg of Prednisone.

In my experience now, as my husband is into his second year tapering, I don't think there is any right or wrong way to do it. (It is taking him so long because of side effects associated with the taper and also the fear of what happens if......) I also don't think that GIs really understand issues associated with tapering, especially if you have been on steroids after a long time. We are working with an endocrinologist because of the long-term use and scary symptoms getting off of it.

As long as you can get the pills, I personally think you can manage your own taper. 5 mg every week is ok if the prednisone isn't otherwise really messing you up. The lower down you get, like after 10 mg., you may want to taper by 2.5mg. You can ask your doc to write a prescription for 10mg pills or 5 mg pills too as you go down, so it is easier to cut in half.

If this is the first time you have used steroids and things have normalized, then there is no rush to go on Entyvio. As you go down, you will know whether or not it is really working. If it becomes apparent that the prednisone has not completely resolved things, then Entyvio is a good option. And if things are bad you may need to up the prednisone to get things under control until the Entyvio kicks in, which can take a while.

Which drugs to use and the timing is a personal experiment to a certain extent. I think it is really important to keep a diary of your symptoms along with drug dosages so that you can see what works or doesn't at which dosages etc..

Yeah you are not in remission (read your history and you have really never been in remission in 2017) and you will most likely flare when you get down to 20mg and below. When that happens (it happened to me) you'll have to go back up to 30 or 40mg, hold until stable, and start weaning again--not cool, because you really need to get off the pred ASAP.
So yes, you do need the Entyvio, and count yourself lucky if it works.

Thank you Plucky and Troubled Turds. I have been going round and round in my head about it, but had pretty much realized that I would be foolish to not start the Entyvio considering it takes time to work. I just so want to think the other extra things I have been doing have worked. Denial is a place I suppose we all go into at some place in the journey. I think frankly, I am scared that the Entyvio won't work either, as I know that I have less options now.

Oh no Spring. I am so sorry to hear that. Have you been in touch with your GI? When are you starting entyvio?

Biologics didn't work for me unfortunately. Surgery was the best thing for me. I don't even think about UC anymore.

I wouldn't worry though, you will get into remission. Stay calm. Things will work out. I actually had some luck with 6mp for a few years, but was it worth it? Ultimately it just pushed back surgery a couple years, I could have been out living & not feeling all crappy on drugs, going for frequent blood tests, and seeing the doctor all the time. For me, things worked out in the end, but yeah, I lost a lot of time for nothing. There are also a lot of trial meds now that could be worth trying if you've got the energy to go through the trial process. I didn't.