Weaning question...

[jlacey]

My daughter, Sydney (6 yrs old), is weaning off the prednisone....she started out taking 25ml for 4 weeks...and then was to decrease dosage by 5 mls a week...she is now at 10ml dosage...also, a few weeks back started Salazopyrin 400mg 3x a day.
Are there any common side effects to be watchful of with the weaning and upon completion of the prednisone?
I am a little apprehensive...hoping she will have a smooth transition to the maintenance drug and no immediate return of the inflammation once off prednisone.
Even though she was diagnosed with moderate Crohn's we chose the treatment drug that was for mild Crohn's....to start with...in hopes that it will be enough to maintain it. Let's hope!
Any thoughts, on any of what I have said, are always greatly appreciated.
Take care
Jacqueline

 

[SarahAnne]

Hey Jacqueline! Hope Sydney is doing well with her taper. I know everyone is different in the side effects they experience with prednisone, the worst one I have is pain in my joints, especially my knees. If it gets too bad, I slow my taper down a bit to give my body time to re-adjust.

Good luck, hope Sydney's taper goes smoothly.

 

[jlacey]

Thanks for your reply....it seems to be going well...I haven't heard any complaints from her yet...her moon face look is going away....her appetite is not what it was in the 1st few weeks of taking it...24/7 hungry...but apparently a side effect of the Salazopyrin is loss of appetite!
Sometimes she complains of a little pain here and there...but hard to tell with a 6 yr old...if really hurting or just doesn't want to do what I am asking of her lol

She is constantly blinking though....says eyes feel dry??

Hopefully it all goes well...I love having my happy-go-lucky lil smiling face girl back!

 

[Ducey99]

Hi Jacqueline,
I don't have much to add with regards to your post, but you're the first person i've seen on this forum from NL. I live in St. John's and don't really know many people in the area with Crohn's so I figured I'd say hello.

I'm currently weaning off pred as well and am noticing the return of some symptoms. Some pain here and there and a loss of appetite are to be expected I think, as your (daughters) body is so used to the drug. If the new stuff is doing its job then the discomfort, etc. caused by the weaning should subside as her body re-adjusts. (This has been my experience in the past at least). Also, slowing the taper can help a lot.

 

[jlacey]

Thanks for your response!
And HELLO to a fellow NFLDer...I am from St. John's as well

This is all still so new to us...no clue what to expect once the prednisone is over and she is just on the Crohn's meds....hopefully it will keep it in remission!

I just wondering if further weaning should be in effect...after the week at a 5ml dosage....should she move to 2.5...or every other day for another week or so??

I guess I have to trust in the Dr's recommendation to finish at 5mls....but ultimately just want what is least troublesome for my daughter.

 

[Ducey99]

I would say to definitely follow your Dr.'s advice on the taper, but don't be afraid to go back to 5ml if major symptoms return. I recently went from 15 to 10 and noticed some issues, so after a quick call to my GP to let him know what was going on I jumped back to 20 in order to stabilize and try again, more slowly (and not while i'm dying with the flu).
Also, if your GI is Dr. Critch, you are in great hands. I saw him until I became an "adult" and he is fantastic.

 

[jlacey]

Thanks!
We are actually seeing the other Pediatric Gastroenterologist...who is new to St. John's...but was specialist in Winnipeg before moving here...her name is Dr Sathya.

So once weaned from prednisone and on the maintenance meds exclusively...IF symptoms were to reappear and a return to prednisone needed...is it usually immediately that the stomach pain...diarrhea/blood returns?
Or is it entirely individual based...just wondering at what point after weaning I can relax a bit lol

 

[Ducey99]

Mine was pretty immediate, the day of pretty much, and after about a week or two of no appetite I decided to boost it up again. From what I hear from others it's usually right away. I would say if she comes off and doesn't notice much in a day or a few days then you're in the clear.
Also, if you're having any concerns at all during the end of the taper, give your doc a call for sure. Coming off can be stressful and it's always good to get reassurance.

 

[jlacey]

Well her appetite is already not so great the last week or so...although can't say she isn't eating...just being fussy....but then again she is a 6 year old! lol

So besides the loss of appetite what other signs were immediate for you?

She has her next appt...the 23rd...so will be off prednisone...5 days by that time....

 

[Ducey99]

Loss of appetite was a big one for me, a bite of food and I was done. The only thing I could get in me was Ensure and milk and even that made me feel nauseated at times. I also had an increase in BM frequency, including a return of my nighttime bathroom trip (which still has not gone away..) and blood in my stools and an increase in "discomfort".
All that being said my Crohn's is currently pretty active and i've been dealing with a bad flare now for a while.
I don't think you could ask for a better appointment time. It's long enough after the pred that you can get a feel for what's going on in terms of symptoms returning, but not too long that it would get really bad.

 

[jlacey]

You know Sydney never lost her appetite completely or energy really...but it came on really sudden...not a bowel problem before mid-August this year!
I am happy with the way the appt booking happened....think it's good timing...

Hope you feel much better really soon!!

 

[Johnnysmom]

My son finished his Prednisone taper one week ago. He started sleeping better but still not great. He had a headache pretty much all day the first three days. Appetite did decrease but it has been good, I would say normal now. I think you can expect a decrease because the Prednisone makes them so hungry without it I am sure it is just natural to have a decrease. He didn't have any D (but never really has) but he did have a looser stool when he went. Which is about every other day for him and is his normal. The prednisone can constipate and I actually had to give him Miralax at one point because of the constipation so I am assuming that his body is just adjusting to the lack of Pred. He has felt nauseated. I don't know if that if from a different recent med change but it is usually brief and completely taken away with zofran. He was extremely tired until about day 4 off Prednisone now he is perking up more everyday. The nurse told me that their bodies are adjusting and it can take a while. You can even have a little break through bleeding (but I would report to dr.) I have just written down his symptoms and things are improving so I am trying not to worry. He has lost a pound or two but his moon face is gone so I think that is just the extra water weight he had. Your Sydney is beautiful!! Hope she is feeling all better soon!! Also, I have a healthy 7 year old myself and you are right about fussy and appetite changes it definitely fluctuates!

 

[jlacey]

Thanks for your reply...it's reassuring to know...the good and the bad about tapering...I just like to be informed and prepared....that calms me
Besides the 'moon face' (which is almost gone already) and appetite increase...plus 6 lbs...Sydney didn't experience any other prednisone side effects...so hoping her tapering isn't too bad either!
Her bowel movements have been normal and regular since about the 3rd day of taking prednisone...to which I was very grateful!

Sydney was diagnosed with moderate Crohn's...we chose the mildest treatment though...I am hoping that was the right decision...the dr said there wasn't any harm in starting there and seeing if all areas of bowel are treated with taking it....
I am not familiar with any of the other meds besides hers...the one for moderate Crohn's, which was a possible choice for Sydney...was Azathioprine...stronger drug and more possible side effects plus more bloodwork...can imagine with her being 6 how well that would be received!

So guess it's trial and error....wait and see!

Hope your son stays well....

 

[Brrenda]

I'm surprised they gave her predisone so quickly. I've never taken it and I had bad Crohn's when I was diagnosed. I hope it goes well and the maintenance drugs keep her in check. Try your best not to have her on pred if you can as it's one of those drugs you want to use as little as possible, especially since she's so young. Best of luck to you.

 

[jlacey]

Yes the prednisone was to get the inflammation and diarrhea under control quickly.
4 weeks at 25mls...then weaning off by 5mls a day....she is at the 10ml dosage now...and started the Sulfasalazine about 2 weeks into taking the prednisone.

I really hope she doesn't have to take that again any time soon!

 

[Cross-stitch gal]

Are the little one's eyes still dry and bothering her? A few years ago my eye doctor diagnosed me with iritis which can cause irritation and dryness of the eye. Not a whole big deal, just gotta put some eye drops (artificial tears) in to sooth them once in awhile.

 

[jlacey]

Thanks for your reply regarding dry eyes...Sydney wears glasses...not for vision but they have a built-in bifocal to correct a turn in her right eye on close focusing of items...she sees an eye specialist and every yr has to get the dreaded 'eye drops' so the doctor can look into the back of her eyes....she hates them...they sting and she doesn't like the blurry vision etc...so she won't let me go near her with my natural tears eye drops lol
I am thinking it is something to do with school...air there...and all the concentration....I didn't really notice it much over the holidays...so hoping it passes.

 

[Cross-stitch gal]

Don't really blame her with the drops! I remember going through the halls at school and having my eyes water. So, you could be right about that. Hope it passes too. Good luck

 

[QueenGothel]

My 4 year old has UC. W have been having lots of trouble with the pred ween. Every time we get to 5ml she gets a bug the doc thinks. I have read that if they get you to the finish line and want to do a 5ml every other day. That sometimes going from 5ml to 2.5ml is a easier ween. We haven't gotten that low yet. my DD has been on it since 10/14/2011. We are back at hospital and she is back up to 20ml hopefully we can get her off it this time. I am reading a book on crohns and colitis and it said sulfasalasine make for an easier ween. We might be changing meds. I hope she comes off smoothly.

 

[jlacey]

Thanks Mary!
...perhaps that is why Sydney doesn't seem to be having a problem with it...she takes sulfasalasine and weaned off 5mls of prednisone last Wednesday...and has been fine ever since...so crossing fingers all is good!