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Posted 2/17/2017 5:35 AM (GMT 0)

suzy-q said...
My husband had tried Remicade, Humira and Entyvio. None of those worked. Xeljanz has been like a miracle. He has been in full remission for over six months now, and is tapering off prednisone .5mg a month -- it has been extremely difficult to get off of it. He did get osteoporosis from being on steroids over 3 years.

When he was talking to surgeons, all said that a 3-step j pouch was the only way they would do it given that he was on steroids.

I also wonder if I taper too fast. I was doing 5mg a week and then down to 2.5 a week and when I did the best I was doing 2.5 every two weeks. I just start feeling better and want off it so bad I get impatient sometimes.
Posted 2/17/2017 2:26 PM (GMT 0)
Your situation sounds similar to my husband's. The problem was that while the UC was active, no matter how slowly he was tapering, once he got below 17.5 mg, it would come back and he would have to go back to up to 40 mg and start again. He was able to keep symptoms under control at 17.5 mg. But that is not a long-term answer. Since he is now in remission, his current issue is having adrenal-gland failure issues associated with the taper, so he has to do it so slowly.

If you are not averse to continuing to be a guinea pig when it comes to trying out different drugs, you may want to explore Xeljanz or Stelara. We were able to get Xeljanz prescribed by a doc we saw for a second opinion at Johns Hopkins and insurance actually approved it. I think those guys do consultations by phone. Stelara is in clinical trials for UC -- apparently with some success.
Posted 2/17/2017 2:59 PM (GMT 0)

suzy-q said...
Your situation sounds similar to my husband's. The problem was that while the UC was active, no matter how slowly he was tapering, once he got below 17.5 mg, it would come back and he would have to go back to up to 40 mg and start again. He was able to keep symptoms under control at 17.5 mg. But that is not a long-term answer. Since he is now in remission, his current issue is having adrenal-gland failure issues associated with the taper, so he has to do it so slowly.

If you are not averse to continuing to be a guinea pig when it comes to trying out different drugs, you may want to explore Xeljanz or Stelara. We were able to get Xeljanz prescribed by a doc we saw for a second opinion at Johns Hopkins and insurance actually approved it. I think those guys do consultations by phone. Stelara is in clinical trials for UC -- apparently with some success.

When he started Xeljanz how long did it take to work? How often does he take it? Is it an IV or shot?

What happens when he's in remission if his taper is too fast?
Posted 2/17/2017 4:20 PM (GMT 0)
Xeljanz is a pill. 4 small pills a day. It is approved for rheumatoid arthritis, in Phase 3 maintenance clinical trials right now for UC and hopefully will be approved for UC this year. So it would be an "off-label" prescription. Miraculously our insurance company approved it, probably because we had tried everything else and surgery was next. Our regular GI couldn't prescribe it off label. I don't know whether getting it through Johns Hopkins made a difference with insurance approval.

The initial clinical trials to see whether Xeljanz would induce remission were 8-weeks, so you'll know sooner than with the other biologics which take awhile with the loading doses. That's why my husband was willing to give it a shot. Within 2 weeks he could tell that he was improving.

Stelara is a shot. If you get in a trial, the problem is you won't know if you are on the placebo. You may be able to get it off-label too. Our GI has a patient in the Stelara study and he said after the first shot the guy was doing much much better.

He did a conventional taper off of prednisone -- after 5 mg a day, went down to 2.5, then 1, then 0. Then tried 5 / 0 / 5, 2.5 / 0 /2.5 -- various things. Side effects were super exhaustion, depression, panic attacks, thought he has having a heart attack or stroke, etc. We went to an endocrinologist who we have been working with. During the taper he developed neuropathy in his feet which has been very troubling. Unclear whether it is related to prednisone use, taper, UC. So now he is taper .5mg a month, and at some point will switch from prednisone to hydrocortisone. May just have to live with the neuropathy unfortunately.
Posted 2/17/2017 4:27 PM (GMT 0)

suzy-q said...
Xeljanz is a pill. 4 small pills a day. It is approved for rheumatoid arthritis, in Phase 3 maintenance clinical trials right now for UC and hopefully will be approved for UC this year. So it would be an "off-label" prescription. Miraculously our insurance company approved it, probably because we had tried everything else and surgery was next. Our regular GI couldn't prescribe it off label. I don't know whether getting it through Johns Hopkins made a difference with insurance approval.

The initial clinical trials to see whether Xeljanz would induce remission were 8-weeks, so you'll know sooner than with the other biologics which take awhile with the loading doses. That's why my husband was willing to give it a shot. Within 2 weeks he could tell that he was improving.

Stelara is a shot. If you get in a trial, the problem is you won't know if you are on the placebo. You may be able to get it off-label too. Our GI has a patient in the Stelara study and he said after the first shot the guy was doing much much better.

He did a conventional taper off of prednisone -- after 5 mg a day, went down to 2.5, then 1, then 0. Then tried 5 / 0 / 5, 2.5 / 0 /2.5 -- various things. Side effects were super exhaustion, depression, panic attacks, thought he has having a heart attack or stroke, etc. We went to an endocrinologist who we have been working with. During the taper he developed neuropathy in his feet which has been very troubling. Unclear whether it is related to prednisone use, taper, UC. So now he is taper .5mg a month, and at some point will switch from prednisone to hydrocortisone. May just have to live with the neuropathy unfortunately.

Yeah I'm coming up on 11 months of entyvio. nothing drastic since about July ish.

So the typical UC symptoms weren't the issue during the taper? my concern has always been that I will achieve remission then taper and the prednisone would be my cause of flare.
Posted 2/17/2017 5:27 PM (GMT 0)
You shouldn't have to travel out of state for surgery; there are good CR surgeons in Denver. I was also on prednisone when I had surgery; it just means you will likely have to have a 3-step surgery. The reason why I finally opted for surgery was for my 2.5 year history with prednisone.

Sue
Posted 2/17/2017 8:09 PM (GMT 0)
If you are in remission, then you don't start flaring as you taper. From my perspective, that's the definition of "remission." And there is a psychological element here -- my husband was super paranoid about tapering because it always meant a relapse with the symptoms. But he really is in remission, so the only symptoms from tapering were adrenal-gland disfunction related, not UC. Another indicator of remission, I think, besides the fact that running to bathroom / bleeding / etc were gone, was just feeling better.
Posted 2/18/2017 6:36 AM (GMT 0)

suzy-q said...
If you are in remission, then you don't start flaring as you taper. From my perspective, that's the definition of "remission." And there is a psychological element here -- my husband was super paranoid about tapering because it always meant a relapse with the symptoms. But he really is in remission, so the only symptoms from tapering were adrenal-gland disfunction related, not UC. Another indicator of remission, I think, besides the fact that running to bathroom / bleeding / etc were gone, was just feeling better.

Okay that makes sense. Well went to the GI today and he stated me on azathioprine. He said he doesn't believe I'm ready for surgery and thinks this will work. He said he expects by summer time he can have me off prednisone.
Posted 2/18/2017 6:38 AM (GMT 0)

suebear said...
You shouldn't have to travel out of state for surgery; there are good CR surgeons in Denver. I was also on prednisone when I had surgery; it just means you will likely have to have a 3-step surgery. The reason why I finally opted for surgery was for my 2.5 year history with prednisone.

Sue

I would hope there is one here locally. Just haven't found one with a good set of reviews. Maybe my doctor will be right and I won't need it. He seems confident with my age and overall health he can "save" my colon.
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