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Help with Prednisone taper

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Crohn's Disease
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Posted 4/24/2014 6:27 PM (GMT 0)
Hi all,

This is my first time posting to the forum but have been reading it since my Crohn's diagnosis in October 2013.  I have learned so much from the postings and I really appreciate people sharing as this has been a big adjustment for me.  I am a 34yr old female.  Started out on 2400mg of Asacol HD daily in October.  In November I was put on 40mg Prednisone daily and felt really good until my GI directed me to start tapering off in mid December. I got significantly worse around the Holidays-average of 20BM's a day, passing blood, generally feeling like crap (literally).  I told myself that maybe this was how I was going to feel and I would just have to accept it.  In February another colonscopy was performed and the inflammation was so bad I was admitted to the hospital for 6 days needing 4 units of blood, TPN, and starting Humira injections.  I was so much better when I left the hospital.  I was on 60 mg Prednisone and started tapering off again.  In late March, I was getting bad again and was hospitalized for 5 days with C-Diff.  I was almost off the prednisone and of course had to go right back up again.  I am about 3 weeks into this latest taper, and I am having joint pain and  a terrible bloated type pain in my abdomen.  I am in the bathroom a lot more and have been passing blood again.   I just went from 15 mg of pred to 10mg this week.  It's like I can't live with it and I can't live without it.  I am due for my Humira injection on Monday and still on Asacol HD.  Does anyone have experience with this?  Thanks!

Posted 4/24/2014 8:33 PM (GMT 0)
I'm really sorry for all that you're going through! It sounds awful! You just can't catch a break! I have been on prednisone for over 20 years (yes, you read that right) so I have quite a bit of experience with pred. It has never given me joint pain, so I would suspect the joint pain as a side effect of the Humira, especially if you didn't have the joint pain prior to taking Humira and if you don't have arthritis. As for the bloated pain, it could be lots of things.

It sounds to me like your current med regimen isn't controlling your flare so when you taper down on the pred you flare right back up again. Have you called your GI to discuss all of this? Maybe you need to get the Humira more frequently. Or maybe the asacol isn't helping. Some people have a mesalamine sensitivity and it actually makes things worse- more blood, gas, etc. I understand why your GI would have you take asacol. I was on it for years. But my current GI says that it's for mild to moderate disease and it sounds like yours is severe... At least right now. I wonder if you need something stronger like an immunomodulator like Imuran or 6mp. Either way, these are all things you should discuss with your GI.

I'm so sorry that it's been so difficult for you to get this flare under control and that you've been so sick! I hope you feel better soon!
Posted 4/24/2014 9:07 PM (GMT 0)
Thank you so much Stef17. I was going to take my humira injection Monday and see what happens. I saw my gi last week and I was good then. After my most recent hospitalization, my gi has stated if I dont improve he wants me to go to Cleveland Clinic. I am willing to go. I am concerned about a c diff recurrence as well. To answer some of your questions I have never felt the asacol has done much. I had a flexible sig scope in March and the gi told me he could see some improvement in the inflammation. I like my gi and he will listen to me.

Post Edited (buckeyecrohnie) : 4/24/2014 3:13:10 PM (GMT-6)

Posted 4/24/2014 9:19 PM (GMT 0)
It's very possible that you could be having a cdiff recurrence. That stuff is the devil to get rid of. Can I offer some advice? If your GI says he wants you to go to the Cleveland Clinic if you don't improve.... go now! Make an appointment NOW! He's telling you in a professional way that he does not know what to do with you and he wants you to be seen by someone who is more knowledgeable. This just happened to me in March and I was sooooo sick. I should have been admitted to the hospital, but I refused and waited it out at home until my appointment with the new GI at the University hospital came up. My GI was not an IBD specialist and he just didn't know what to do with me. So, if your GI is saying that now, do NOT wait. Because you don't want to be feeling bad and have to wait even longer. Maybe he can make a call and get you in sooner. That's what my doc did. He won't be offended, he'll be relieved. The Cleveland Clinic docs will know what to do to help you. I wish I would have known sooner about my doc. He is a sweet person. He's just not able to help someone as "complicated" as me. Sounds like your doc isn't either. Make that call TODAY!

Stef
Posted 4/25/2014 12:00 AM (GMT 0)
Ditto! Go now!
Posted 4/26/2014 1:38 PM (GMT 0)
Hi there I know the cdiff crohns rollercoaster. When I was diagnosed with the crohns I caught cdiff in the hospital. It took 10 months and finally a 12 week vancomycin taper to get rid of the cdiff. It is very frustrating to not know if it's one or the other. I was even testing positive for cdiff with formed stool. Now every time I go on antibiotics I have to go on flagyl as well because I'll have the cdiff pop back up. If you are still testing positive for cdiff I would maybe ask your GI about a flagyl or vancomycin taper?
I hope it gets better for you soon
Posted 4/26/2014 8:25 PM (GMT 0)
To update I came to the ER yesterday and was admitted for the third time in 3 months. They started me on flagyl and vanco and the nurse just told me a few minutes ago that I have tested positive for cdiff. I was not surprised because I was feeling the way I did when I had it in March. My gi also has me scheduled for a colonscopy on Monday. I appreciate everyone's well wishes.
Posted 4/27/2014 12:42 PM (GMT 0)
darn Cdiff.  It's tough. I had such a hard time tapering off Pred and I think Cdiff was the culprit. Once I did a round of Vanco I was finally able to get of prednisone. From what I gather the cdiff test is difficult to run and sometimes you get false results.   Of course I'm still flaring but am able to at least function and go to work.
Posted 4/27/2014 2:35 PM (GMT 0)
Hang in there I know its tough. Cdiff has had me hospitalized far more than my crohns. I'm so terrified of going on antibiotics now for anything so I dont get a cdiff flare up
Posted 4/27/2014 3:34 PM (GMT 0)
I think I could have wrote your story myself for my kid. We were in the hospital last week, and caught back c diff after 3 days in. (we had 2 negative tests before admitting) We can't be certain that is where she got it back, but since the last negative test was 4 days before admitting and she went no where it only makes sense.

She also just came off a prednisone taper as she was on it for 1.5 years. She had a lot of joint pain from it. I know it was from that, as for a while that was all she was on as we were transitioning from remicade to methorexate & humira. I am doing my best to keep her off it but I am suspecting she will go back on it soon as symptoms aren't subsiding and she is near the end of her flagyl dosage. I am going to confirm 2 negative c diff tests before reintroducing prednisone. We noticed things changing once she got down to 20 mg. I finaly just had her go thru the taper for good or bad. She has now been off it for a month. Sorry you are back in the hospital, but at least you are taken care of.
Posted 4/27/2014 4:04 PM (GMT 0)
Supportive mom it is bad enough to be an adult and having to go through this. I can't imagine being a kid and having to deal with this.
Posted 4/27/2014 4:08 PM (GMT 0)
I always taper slower they they say especially when getting below 10 mg. I usualy go from 10 to 7.5 , 5 , 2.5, 2.5 everyother day. Each time I stay at the dose for a week at least. It is the only way I have been able to get off pred sucessfully.
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