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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Back on Prednisone -1 day off


03-25-2010, 09:02 PM   #1
chelsmom
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Back on Prednisone -1 day off

I thought I'd update you on my daughter Rachel, she has Rett syndrome, is non verbal and was dx'd with Crohn's on Feb. 10th. She just finished her 6 weeks of prednisone, starting at 40 mg and tapering each week down to 5 mg's. I think I screwed up, I should have called her GI doc back around 15 mg's when she wasn't feeling the best, I was thinking she was having side effects from the med and wanted to see how she is off of it. Well, she's had a really rough week, lots of pain so today I called and told him that she had 2 fantastic weeks, the weeks of 30 mg's and 20 mg's. He's putting her back on 20 mg's for a week then we're to call him with the results and if she's doing ok, we'll taper by 5 mg's each week.
How many times can we do this, keep bumping the dose up then taper? I feel so bad for not doing something earlier, I just kept thinking she'd start feeling better as we got rid of the prednisone. UGH.

Joan, if you're out there, how are you doing on your taper, your dose was
very similar to Rachel's if I remember right.
Thanks for your input.....this is the most helpless feeling we've ever had with her, we have no idea what she is feeling, we can only guess. She has minimal eye gaze communication but it's not accurate. I ask her to "look at me if your tummy hurts" she'll look at me but then if I ask her to "look at me if your foot hurts" she'll look too. :-)
Tammy
03-26-2010, 07:10 AM   #2
Dustin
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Hi Tammy,

Many people have problems tapering off Prednisone - myself included. Sometimes it is just a matter of taking it more slowly when tapering off. I wish you all the best luck getting her off the prednisone - it is a wonderful drug in many ways, but not so good in many other ways.

Wishing you and your daughter a speedy recovery. Good health and best of luck.
03-26-2010, 07:41 AM   #3
Astra
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Hi Tammy

Yes this is very hard for you both especially as Rachel can't communicate with you.
I did taper to 15 mg too, oooooo big mistake, was quite ill with D and pain, so I've upped it up to 20mg and I'm staying on 20mg until my appt with gastro on 8th April, then I don't know!?
It's a fab drug, keeps you pain free etc, but it's hard to wean off, so maybe the best thing to do is stay on 20mg and then taper very slowly over the next few weeks? You can up the doses, it's ok to do this.
How old is Rachel? Does she attend a special school? Do they have TEACCH there? This is a communication system that we use with children on the ASD spectrum in my school. It's basically using visual tools. If I can help in any way, just let me know
Hope things settle down quickly for you both
Love as always
Joan xxx
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03-26-2010, 08:01 AM   #4
Crohn's 35
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I am on Prednisone 25mg and taper to 20mg tomorrow, I know that is the last safe line for Prednisone, but I am hoping the methotrexate kicks in. You always need something to join on if you taper, as soon as you get to 20mg, the symptoms come back. Prednisone is not really a long term drug, so I am hoping I don't flare either. All the best to you and your daughter, big hugs!
03-26-2010, 09:28 AM   #5
CrohnsHobo
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I think slow is the key when tapering once you get to 20. I wouldn't go more than 5mg each time after that. My current Dr. has me going from 20-15-10 then 1 mg a week after that.

But I also have Metho/Humira backing me up.
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03-26-2010, 11:57 AM   #6
chelsmom
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Thanks for the replies, it's great to hear what you're all going through to try and figure this out for Rachel. She is 16, in 10th grade.........although, barely makes any school days lately. We are going to try an eye communication device, it's a DynaVox system, her OT has access to a free trial run, it calibrates with her eyes and when she looks at the screen it locks into what she is looking at. We've tried PECS symbols, but she's not that accurate or doesn't understand the concept enough to make it function for her and her hands are non functioning for switch type devices. Very frustrating!

I wonder if dropping by 5mg's at a time is too much for her, she has a fantastic GI so I trust his knowledge but I wonder since she's only 75 pounds if her weaning should be in smaller doses. She is also on Pentasa, has been for 5 weeks so you'd think that would have kicked in to take over when she goes off the Prednisone. Her next step it humira if this doesn't work.

Anyway, I SO appreciate your words of wisdom and experience.
Thanks,
Tammy
03-26-2010, 12:08 PM   #7
Astra
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Hi Tammy

Yes, I agree, PECS is very complicated with children with poor hand to eye co-ord.
That Dynavox sounds great, not heard of that one!
I was thinking more of a visual that you could draw of symbols of aches, pains ie a picture of her holding her tummy or head, and feelings, if she could choose?
I believe Rachel would benefit from staying on a higher dose, maybe 30mg of Pred for now until you get to hear about an alternative like Humira, and she'll probably have to stay on Pred then, until the Humira kicks in. The Pred at higher doses will enable Rachel to put on some much needed weight too.
Pentasa on it's own won't work, it's too mild. IMO
Hang on in there Tammy, you're doing just great!
Joan xxx
03-27-2010, 06:58 PM   #8
chelsmom
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Well, after 2 days on 20 mg's of Pred. she's feeling great........gosh, wish she could just stay on this forever! In my dreams I know :-).

I'm to call her GI on Wed to report how she's doing before dropping her to 15 mg. At least she'll have a few good days between now and then.
I should try making some pictures Joan, try to get one of a girl holding her stomach maybe. She does look at me when I push on her lower right side of her belly, below her belly button and ask her if that's where it hurts, she's pretty consitant with that, I'm convinced that is where her pain is. Makes sense too since her erosion is in the distal ileum.
I am wishing I had crohn's instead of her, at least I'd know what I'm dealing with.
I'll keep you guys posted, I sure appreciate you all. I tried to get a picture of her on my avatar but that option isn't working now. I'll get a picture so you can put a face to her stomach :-)
Thanks,
Tammy
04-01-2010, 02:53 PM   #9
chelsmom
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So, after 2 great days back on Prednisone the bottom fell out, Rachel has been miserable since Monday. I was to call her GI doc yesterday with a report before tapering the Prednisone and I told him how she terribly got worse fast. We're moving onto Humira now, we have it all set up and on it's way, approved by her Ins. and everything, it will be here tomorrow and we go to the clinic on Monday for the loading doses. I've read about Humira and I'm a little nervous but at this point, she just needs relief and if this does the trick then it's worth it. I think being non-verbal is the worst part, I have no idea the pain she's in but after seeing her have good pain free days, I have to imagine the pain is horrendous, she's just miserable.

Her pain seems to come and go in waves, is that the case for most of you? I'm sticking to really bland foods and not alot at one time. I'm sure she's so stressed out that it makes her pain worse. She has been waking up in the night with pain the last few nights, almost like clockwork around midnight.

I tried to get a picture of her on my avatar but it wasn't working, I'll keep trying, if you'd like to check it out, learn more about Rett syndrome, she has a website that gives some info on her. www.rachelhanson.homestead.com. I haven't done much with it over the years but you can put a face to her and her problems!
Thanks,
Tammy
04-01-2010, 03:03 PM   #10
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HI Tammy! Wow, Rachel is beautiful! I still admire you for giving her the help she needs. Yes the pains can come in waves, usually for me 3pm the gas can start and get painful. Humira should help her and I know you are worried, you are a mom, and most moms care about their kids! All meds have risks and side effects, but being painfree is a risk I would take. They are working on the Avatar problems too, keep trying! Let us know how she does on Humira. Take care!
04-01-2010, 03:42 PM   #11
Astra
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Hi Tammy
Beautiful photos, gorgeous children
I am so happy that you've progressed onto Humira, really hope this works for Rachel, I'm going to discuss this option for me next week, so hopefully we can blog together on our Humira journey!
sending big hug your way and best of luck to you all, special big kiss to Rachel
fingers crossed xxxx
04-01-2010, 06:28 PM   #12
chelsmom
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Thanks you guys, you're fantastic! We're to the point of quality for her life, she needs to be comfortable and happy. Joan, keep me posted too if you move onto Humira, I feel you're Rachel's guardian angel going through the same things at the same time to give me tips :-)
Take care,
Tammy
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