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Symptoms are back -- Is this normal before infusion?

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Ulcerative Colitis
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Posted 10/30/2019 7:50 AM (GMT -5)
My GI's nurse called back and my doctor said to just wait until after my infusion and see how I feel (I didn't tell them yet I put myself on prednisone). I don't think they understand how debilitating this disease can be. I would not have been able to sleep or work hardly at all (I already took Monday and Tuesday off), and I don't know how I would be able to sit through my infusion or drive myself the 45 minutes to get there if I hadn't started prednisone. My symptoms seem to go from zero to 100 in a matter of a day.
Posted 10/31/2019 2:02 PM (GMT -5)
I'm at the new infusion center. The nurse practitioner here is great. She got my IV in on the first prick, thank god! I'm so glad I came here.
Posted 10/31/2019 2:09 PM (GMT -5)
Let us know if the infusion helps!
Posted 10/31/2019 2:11 PM (GMT -5)
I will, thanks!
Posted 10/31/2019 5:49 PM (GMT -5)
Wish you well!
Posted 10/31/2019 9:13 PM (GMT -5)
Oh Sara! I’m so sorry you are having to go through all of this! I hope you feel better soon.

I noticed you mentioned leaving messages, educating the professionals (thanks healingwell) and feeling like your caregivers don’t understand. No wonder you (we) have anxiety! UC really needs a team of professionals to help us. We need to be able to talk to someone when we need to and sometimes we need to right away.

In Canada, the IBD website recommends team work, maybe we are working towards this so in the next thirty or so years it could be a thing. At the moment I still haven’t seen my doctor since my colonoscopy in July. I’ve heard a few podcasts and read a few personal stories that make me think that there is more of a team approach
In the UK. Sounds like in the USA care can vary, and some people have more choices. But that’s all an aside.

I’m glad you know as much as you do and get this under control. This forum is a lifesaver.
Posted 11/1/2019 8:12 AM (GMT -5)
Thank you, Swan and Rosie. My doctor is pretty good. He's the only GI who has ever given me pain meds (Tramadol), so that is huge for me. I get where he was coming from not wanting me to start on prednisone with all the side effects and now i don't know if the pred or Remicade is helping. But at the same time, I am glad I did because what if I just waited and the Remicade took a while to kick in and then I'm not only missing work for one week but longer and at that point I would also be even more ill.

I'm slowly improving. Had 3 fairly formed stools today so far. Still seeing blood, but not filling the toilet bowl with blood like I was and still having some gut pain but it is lessening up. Only problem is, like I said, I don't know if it's the pred finally kicking in or the Remicade. Pred used to work SO quickly for me and now it takes so much longer, which scares me because then I wonder if eventually it will stop working at all. UC is such a scary disease with so many unknowns. My flares seem to be worse than they used to be as well. I did tell my doctor's nurse I took pred and I'm waiting to hear back from him about how to proceed with a taper.

I'm really glad my infusion went well because my first three were stressful. Really glad i switched from the hospital to this infusion center. My BCBS insurance sent out a letter last week, too, saying if you get Remicade at a hospital they will be requiring pre-auth (they already do so this was confusing) and "on-site visits" and checking to see if cheaper options are available near you! I can sort of understand why because I'll be paying a fifth of the cost I was at the hospital.

Thanks for all the support.
Posted 11/1/2019 12:12 PM (GMT -5)
My GI called and said to taper pred by 10 mg per week. I was hoping to taper quicker, but I guess I'll follow his advice...or maybe drop every 5 days. smile I have an appointment with him Nov. 18, so it will be good to actually be able to sit down with him and not relay everything via nurses.
Posted 11/3/2019 4:42 PM (GMT -5)
On day 6 of 50 mg pred. Slow and steady improvement. Formed stools today so far. Mornings and night are always worst. No noticeable help from the infusion...guessing this is all improvement from the pred. Big disappointment because I thought Remicade had already put me in remission. sad Hoping to get antibody and Remicade levels test back this week. Again feeling really scared for the future. Pred doesn't work as fast as it used to for me. Hate this disease.
Posted 11/4/2019 1:01 PM (GMT -5)
Still lots of biologic options for you as I assume remicade is your first. Don't give up on remi yet though, may need dose or timing adjustments.
Posted 11/4/2019 1:15 PM (GMT -5)
Thanks. I know, it's just a bit frustrating. He upped the dose at my infusion last week because I was never weighed and they weren't giving me quite enough for my current weight. Still waiting on blood test results regarding antibodies and Remi levels. When I'm (hopefully) done with my prednisone taper, it will almost be time for my next infusion, so I won't really have any idea if the Remicade is helping again. It is frustrating taking a medicine and not knowing if it's even doing anything. At least I have prednisone and I am back to being able to function this week, but now I worry about long-term damage.
Posted 11/6/2019 8:23 AM (GMT -5)
I'm on day 9 of 50 mg prednisone and this morning I saw a small amount of blood on the toilet paper again. I have never experienced this before and it really worries me if even prednisone isn't going to get me into a remission-state anymore. I really do not want to get surgery. I'm also really sick of talking with my doctor's nurse. Luckily, I have an appointment on the 18th. I don't know if I should be going up to 60 mg of prednisone in a case like this or what. My symptoms are very minimal but I shouldn't start tapering if I still have symptoms at all, right? Why would the Remicade have seemingly put me into remission for 2 months and now is doing nothing? My bloodwork hasn't come back yet for the Remicade levels, and it's been over a week.

My symptoms are "minimal" now, but I'm still uncomfortable and in pain a lot, I am still losing sleep and I'm still wasting hours on the toilet, even though I'm not "going" much. I don't feel like I can go out and exercise much or do a long hike or run. I have gone on a couple short walks. Anyway, my quality of life isn't very good and I'm almost out of pain pills and am scared to ask for more because I don't want to be seen as a druggie (I've had this bottle since May so I'm definitely not a druggie).
Posted 11/6/2019 9:53 AM (GMT -5)
I would not panic over one episode of blood on toilet paper, as we all have bad days. Look for a pattern (4 days or so) of this before addressing it.
Posted 11/6/2019 10:16 AM (GMT -5)
I'm on day 9 and not better yet and have never experienced this before. And I seem to be responding to pred less and less quickly and have to go to higher doses the last few times, so it feels like a pattern to me. Thanks though.
Posted 11/6/2019 10:20 AM (GMT -5)
I wonder if you need to take a thiopurine (azathiopurine/imuran, or 6MP) too?
Posted 11/6/2019 10:32 PM (GMT -5)
That's what Im wondering too. That's probably what my doctor will suggest at my appt. on the 18th. I'm still bleeding and had to take 2 pain pills today (and am still in some pain and scared I wont sleep due to it). What do I do in the meantime though? Just suffer and ask for more pain pills or up my pred even more? Don't those take 3 months to work? I'm trying to stay positive but pred no longer working well has been my worst nightmare for like the past 8 years and now it's happening. :/ I had 2 days where I didn't take any pain pills and saw no blood. I did an enema last night (or tried...only retained it for maybe 5 or 10 min.). I will try to refrain from freaking out. Lol.
Posted 11/7/2019 12:41 PM (GMT -5)
It's a tough situation, and I wish I could give you a simple answer to it.

If you're getting bad enough to warrant it, you can always admit yourself as hospital in-patient and get on some IV solumedrol (strong steroid) and see the gasteroenteroligist sooner.

Yes thiopurines do take 3-months to work, and you're relying on prednisone during that interim.

There's a chance you've failed remicade, depends on what that blood test says (infliximab antibodies and concentration). Stelara or Xeljanz are both very quick working, 6-weeks or less.
Posted 11/7/2019 1:21 PM (GMT -5)
Thanks, iPoop. I'm not bad enough for hospital yet. Blood tests still aren't back yet. I just called the lab itself. They said it might take until Monday.
Posted 11/7/2019 4:01 PM (GMT -5)
Calprotectin results just came back -- >500 mcg/g (0-50 is normal range posted). And that was after I had already been on prednisone for 4 days.
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