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05-10-2013, 05:00 PM   #61
my little penguin
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It is called a pred burst.
It is often used in asthmatics to calm the airways( inflammation).

It can be used in Ibd but usually for "mild" stuff.

Hope its enough in your case.
DS has only had the tapering kind for his Ibd.
He has had multiple "bursts" over the years for asthma.
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05-10-2013, 06:06 PM   #62
Johnnysmom
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Johnny was on a short course of prednisone with no taper but it was a very low dose for poison ivy.

We did 3/4 of a 6mp pill for about a year. It is a pain to cut every night. But if you think it is a better med for DS it really wasn't too bad.

Johnny also got an MRE about 2 weeks after his scope, Dr. didn't want to wait. I would think with DS's history and that fact that things look mild but fecal cal is high it wouldn't hurt. But I am sure the GI has good reasons. Just a thought.

Hope that short burst of Pred gets things better quick!
(((((Hugs))))))
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05-10-2013, 06:33 PM   #63
my little penguin
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We cut DS 6-mp pil into 1/4 when he was on it with allopurinol.
05-10-2013, 06:50 PM   #64
Catherine
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There should regular blood tests I would expect the first one to be about a week after starting aza.

Good luck.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-10-2013, 09:20 PM   #65
Brian'sMom
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When we did Pred it was over 6 weeks...Since pred is used to stop the flare...the wean is used so that the immune system doesn't flare again when you stop the pred. So the gradual wean is to not upset things. I think that's right but I could be wrong, anybody else? I don't have much knowledge of prednisone because our GI doesn't prescribe it much. It only worked for ds the first time. Other times he flared right thru the whole 6 weeks.

Last edited by Brian'sMom; 05-10-2013 at 09:47 PM.
05-11-2013, 08:36 PM   #66
Mehita
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Oh, the joys of pred! Already experiencing the mood swings and uncontrollable crying. Thank goodness for You Tube, stupid people and funny videos. That finally got him out of his funk and now he's back to being Superman.

On a positive note, he had a nice, regular looking BM today and is down to only two bathroom visits so far. Just two days ago he had 14 diarrhea trips, so I guess the pred is doing its (black) magic already.

So, which would be better - stopping the pred burst after this week because it is simply evil or doing a taper and being on pred for 6 weeks... yet closer to Aza kicking in? While this is somewhat trivial, all the fun end of the school year stuff is starting to happen and DS doesn't want to miss any more school. That might be a benefit of tapering, no? I'm sure our GI would go either way since he hemmed and hawed while writing the script.

I think we'll stick with the Aza for now, but his GI said we could switch to 6MP anytime we want. He'd prefer DS to be on 6MP, but also said by starting with Aza it gives us one more choice in the med hierarchy. If there are side effect, we'll just switch and make it work. It would help if DS put on a few pounds so he wouldn't be in between dosages. I'm totally open to splitting pills in halves and quarters. Nice even numbers, but thirds seems awfully tricky with a round pill.

It may be a mute point anyway. I just have this weird feeling Aza/6MP aren't going to be our wonder drugs. Absolutely no logic or reason for that, just a feeling.
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Last edited by Mehita; 05-12-2013 at 09:27 AM. Reason: typos
05-11-2013, 08:42 PM   #67
Farmwife
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Yup the love hate relationship with pred......we have it to. Grace is struggling and my first thought was oh goody let's get her back on pred and I'll have my baby back. The next thought was I hate that stuff.

I think the tapper might be a good idea but that's up to you guys.
Also on a side note ask your Pharmacist on how they cut pills. The might be able to give or show you something. We have a pill cutter. I love it!

I hope all goes well.
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Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
05-12-2013, 05:01 AM   #68
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Are you confident in your GI? He just seems a little wishy-washy! Maybe that's better than a god complex but I'd rather he seem a little more confident in his decisions! Let us know what you decide as to pred.
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05-12-2013, 06:33 AM   #69
my little penguin
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Hugs - we have seen both types of GIs . Once you understand what is going on
The work with you type is better at least for us.
Good luck on the pred.
I would ask the Gi what he sees as the risk for doing short vs taper for your child.
05-12-2013, 01:00 PM   #70
crohnsinct
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I can only comment on our experience. Only a very slow taper worked for O while waiting for Remicade to kick in. But she didn't get any of the awful side effects so it didn't bother us. If your GI would go for a taper, why not try to give the Aza every chance to work...would hate to abandon a drug because of too agressive a withdrawel of Prednisone. Also, you want him healed! A slow taper will give him that time to heal! No back and forth if you know what I mean.
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05-12-2013, 02:50 PM   #71
Johnnysmom
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^^^^Yeah that!

I think the less inflammation you have when you start AZA the better chance it has to work.
05-12-2013, 03:41 PM   #72
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Hope the Aza starts working asap. I can understand him not wanting to miss stuff at school, so I suppose I would be inclined to do the longer course and let him have some fun!
05-12-2013, 09:38 PM   #73
Mehita
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Are you confident in your GI? He just seems a little wishy-washy! Maybe that's better than a god complex but I'd rather he seem a little more confident in his decisions!
I attribute the wishy-washy to the fact that we're still "dating". We've only seen him twice so far so he's still figuring DS out. He strongly believes that pediatric IBD is it's own world and doesn't always fit neatly into a box so philosophically we get along quite well. He just completely won me over today by responding the the email I sent him earlier... on a Sunday no less!

GI just said we could drop to 35mg of pred tomorrow to see if that helps with the uncontrollable crying and hefty mood swings. I think I'm leaning towards a taper... get us to the end of school, add poundage, give Aza more time.

Thanks for all of your input, everyone. I got a little sentimental today thinking of all the Forum moms (and Dex!) out here and how much I appreciate your knowledge, kindness, and friendships. Happy Mother's Day!!

Last edited by Mehita; 05-12-2013 at 11:27 PM.
05-14-2013, 04:39 AM   #74
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I attribute the wishy-washy to the fact that we're still "dating".
Great way to put it
05-16-2013, 06:54 AM   #75
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Hey Mehita, sorry for the late chime but I just wanted to raise a couple of points.

As you know, it is possible to have high doses of Pred over a short period without tapering but the tapering required for a longer course isn't just about treating the inflammation. Normally Pred is prescribed at high dose for at least 3 weeks. It would be expected that over that 3 week period most of the inflammation, if not all, would be brought under control and reduction of acute inflammation or remission is achieved. The taper has much to do with preventing steroid withdrawal/adrenal crisis as anything. When you take steroids for longer than a couple of weeks your own body's production of the hormone cortisol is suppressed. The tapering of the Pred is to allow the body to start producing the hormone again.

Re: the mild disease. I know it is difficult to comes to terms with the label mild disease and what you see happening in front of you but mild disease can be present and still complications arise. Although my children don't have stricturing disease I have been in the same situation, they have fistulising. My son was diagnosed very quickly and his disease was rated as mild to very mild and yet he developed one complication after another. Certainly not what I would have expected after receiving such a promising pathology report. In his case it obviously only took one deep ulcer to cause no end of bother. I only say this Mehita because I don't want you to get caught up in labels that can be misleading and disappointing.

Thinking of you,

Dusty. xxx
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05-20-2013, 05:44 PM   #76
Mehita
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I wish I could freeze time right now. Normal poops. Good energy. Great appetite. No pains, no nausea, no vomiting, no fevers. Can we just hold steady here? Forever?

Life would be perfect if it weren't for the fact that prednisone is the source of this taste of normal life that we're experiencing.

Who was it who said, "Love pred, hate pred, love pred, hate pred"? Farmwife, maybe? That pretty much sums it all up.

Let the tapering begin...
05-22-2013, 12:37 PM   #77
Farmwife
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[QUOTE=Mehita;652932]

Who was it who said, "Love pred, hate pred, love pred, hate pred"? Farmwife, maybe? That pretty much sums it all up.


QUOTE]


Yes, that was my pearly words of wisdom.
Rules on using Farmwife Quote..................
The first use will be free of charge.
The second quote will be a $1000 dollars and an act of God himself for me to say anything else smart (hush crohnsinct).


05-22-2013, 06:46 PM   #78
my little penguin
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05-22-2013, 08:19 PM   #79
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Pred, our frenemy. Got to love/hate it.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-29-2013, 07:46 PM   #80
Mehita
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First set of labs back - CBC and hepatic panel all normal with only slightly elevated neutrophils. Pred taper is going well so far and no Aza side effects to speak of really.

Is it too soon to feel hopeful? I really want the Aza to work for... oh, a hundred years or so.

Next appt/labs are June 9th.
06-06-2013, 07:42 AM   #81
Mehita
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Last day of school and DS just went from excitedly bouncing on my bed to a gloomy, doomsday puddle of tears. Lots of "I don't know's" and still sniffling as he left for the bus. Hormones? Pred? Mad at me for making him brush his teeth a second time WITH toothpaste?

What a lousy way to start what should be a fun and happy day.
06-06-2013, 07:51 AM   #82
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A woke up very grumpy too, wouldn't even look at me. In her case I think she is getting a cold. She's complaining of a sore throat and being tired (and the rainy windy weather certainly isn't helping). We just weaned her off her daily inhaler so I hope this cold doesn't set her back. Our poor kiddos.
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06-06-2013, 08:06 AM   #83
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Last day of school and DS just went from excitedly bouncing on my bed to a gloomy, doomsday puddle of tears. Lots of "I don't know's" and still sniffling as he left for the bus. Hormones? Pred? Mad at me for making him brush his teeth a second time WITH toothpaste?

What a lousy way to start what should be a fun and happy day.
Oh Mehita.... I couldn't help but laugh and think to myself that one day you both will look back on this day and laugh too... In my family it would have been the fault of having to brush a second time... that is so funny...

I hope he comes off the bus with a big smile for the Summer!!
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06-06-2013, 09:12 AM   #84
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I'm sooo jealous we've got too weeks of school to go. I hope the toothpaste incident was the low point of the day and it turned out well.
06-06-2013, 03:28 PM   #85
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Yep, I've had to send them back to brush with toothpaste as well but I think I live to embarrass my kids now. It is so easy with tween/teenage boys.
On my recent chaperoning trip that was how I convinced the 7th grade girls to keep in contact with me. If they didn't I told them I would hang out with them the entire time and embarrass them.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
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06-06-2013, 09:27 PM   #86
DustyKat
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@Mehita...I hope the day ended better than it started??

@DanceMom...I hope A's day was a good one too and that she isn't coming down with a cold.

Dusty. xxx
06-07-2013, 09:23 AM   #87
Mehita
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Betty Crocker saved the day with gluten free chocolate chip cookies after school.
06-07-2013, 10:13 AM   #88
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Thank you Betty Crocker!!

I am amazed at how many gluten free options there are now. How do they compare with non-glutin cookies?
06-07-2013, 06:06 PM   #89
my little penguin
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gluten free just doesn't have the "Stick" so
it really depends on finding the right flour combo

adding a ton of chips also helps "melt" it together.
06-07-2013, 06:53 PM   #90
Mehita
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Let's just say Betty Crocker is convenient. Fresh out of the oven they're not bad, but after a day they get pretty crumbly. I'm not GF and think they have an odd after taste, but DS likes them. Then again he doesn't remember what "real" cookies taste like.

Just picked up Pillsbury's new gluten free cookie dough today. DS is excited to eat it directly out of the bucket. Five years ago we could hardly find a good tasting loaf of bread and now we have cookie dough. Pretty exciting stuff for us kitchen challenged folks!

Really, I do feed him healthy foods on occasion .
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