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Sending hugs! Hoping testing goes smoothly and they find some answers to help. Will keep you in my thoughts and prayers!
 
I hope more than anything that things continue to go well for Lucy. :ghug: And that all goes well for you too Mls. :ghug:

Sending loads of love, luck and healing thoughts your way!

Dusty. :heart:
 
While on pred Lucy has been having
D around 3 times a day but since yesterday
Her tummy pain is back and has been going
Around 6-7 times and day.
Is this normal with tapering off pred?
 
Unfortunately it is not uncommon for symptoms to kick back in when Pred is tapered. :(

For some people it will settle down but if the symptoms are excessive and/or persistent then it usually means upping the dose again until things settle before tapering again. Upping again can mean going back to original full dose, or close to it, or going back to the dose you were on prior to the last taper. The taper may also be slowed down the second time round.

Good luck hun, I hope things settle down for your lass. :ghug:

Dusty. xxx
 
It was Lucy's 4 th birthday yesterday
This year has flown by, cant belive
My brave little girl has gone though
So much .
We had her first party yesterday she really
Enjoyed it x
 
Awwww, bless her. :):):)

Happy 4th Birthday Lucy!!!

55e3e5c2.gif


Dusty. :heart:
 
Thank you everyone
Lucy was tapering down
When she got to15mg half way
Symptoms started back so GI
Has told us to up it to 20mg
For another2 weeks and start tapering
Again. Fingers crossed.
Feeds are going well she has 4 feeds through
The day and a night feed which last most of night
To bump calories up.
 
I just want to say I'm sorry
I've not been around things are very
Differcult at the moment and very stressful.
I hope you and your kids are doing well.
 
Today was a lovely sunny day
I had a family member from Australia visiting
So we ventured out for the day.
It was the first day we have gone out
Properly with Lucy after having mickey
Button fitted and we had no problems
Infact it was better than I expected.
 
Good luck, I hope the discussion goes well. Thankfully I don't mind hospitals (my mom was a gp), but I can only imagine how stressful it must be to have to go when you don't like them. Adds to the stress of not feeling well. Hope they come up with a plan to make you feel better!
 
:banana:Lucy went to GI appointment today
They weighed her and she has put on 1lbs
It's not a lot but its a massive achievement
She hasn't put any weight for long time
Couldn't wait to share the news
 
Thanks everyone.
Just a quick question....
Lucy is tapering again from another 2
Week of pred, she was down to 15mg
Last Friday but it seems when she
From 20 mg the symptoms get worse
She is due to go to 10 mg tomorrow
But her D is really bad and tummy pain
Is back, just wondering if will ever get off
Pred? Do u think she needs a maintance
Med? Does this happen a lot with kids on pred
When tapering . Any advice pls
 
Hmmm Lucy has struggled today
To take two feeds here belly ache
Has been bothering her.
Seems when we reduce the pred symptoms
Come back.
 
Hugs
What does her Gi say when alsymptoms come back?
When DS couldn't wean from pred without symptoms this past summer
Docs knew his current drug plan was not working.
Hope they get a good plan for her soon.
 
Many people have increased symptoms when prednisone is being tapered. Sometimes,the doctor will up the prednisone to the dose on which the person was doing well on, for a while and then try to taper again more slowly. If each time you try to wean the prednisone, she feels sicker, she may need a maintenance medicine as prednisone should not be used for the longterm.

Sending HUGS and healing thoughts!
 
As many of you know what's been happening
With me past few months with my health
The roller coaster hasn't stoped!
I've been struggling with a new medical
Problem and tomorrow I'm going into hospital
To have a biopsy done on Tuesday
I can't tell you how scared I am
And how stressed I am just feel its
One thing after another since February .
I hope all your kiddies are doing ok
And I want to say a huge thank you to
You all for the support caring and love you
Have shown me and my family .
Thank you frm Helen and lucy
 
Helen, I'm thinking of you and praying for you and Lucy as your health is not cooperating :(. What other meds is Lucy on? I'm glad the pred helped, it's a good sign that other things can help in the future. Seems to me that she needs a maintenance med... that is what finally brought Jaedyn into remission...
 
Sorry to hear things aren't better with you. Just wanted to wish you luck for the biopsy. Thinking of you!
 
Hi all just a quick update
Lucy has managed to taper down to
10mg of pred, GI wants her to be on
That for 2 weeks and then try to taper
Down another 5 mg.
there is talk of them wanting to put her on
Maintance meds there was talk of either
6mp or aza but nothing was decided
He wants to make sure they put her on right one.
 
I'm not sure of the deferents but they were going to put Grace on 6mp but for now we decided to do LDN.


I'm glad she could tapper down. How's her feedings going? Is she back on food?
 
Jack was on AZA for several years with no side effects and it worked fairly well at keeping the disease in check although he did not grow and gain weight during that time I'm wondering if he would have had we added the supplemental drinks back then.
My hubby has been on Aza for the last 8-9 years and has done really well on it, with very minor flares here and there again no side effects with him either. He has blood tests every 3 months.
I believe Aza and 6MP are the same class of drugs and work much the same way. Why doctors prescribe one over the other I'm not sure but now I'm curious and will have to do some research and ask Jack's GI
 
We were told the 6mp is easier on the liver than the Aza. Are you getting a choice? Andrew was borderline for tolerating Aza but he had to fail that first before the GI was "allowed" to give him 6mp (licensing laws or something like that)
 
Hi everyone
Lucy saw the GI today, they have stopped
Lucy tapering at 15mg of pred as she had
Problems with tapering.
She is also full of cold and temp due to this
Crazy weather we got in UK one day hot 5 days cold n wet
Anyway Gi said that in the next two weeks
Lucy will start maintance meds they just
Can't decide which it will be aza or 6mp.
Which on do you guys think will be better
On a 4 year old? Which one has worse side
Affects? Please any advice is greatful.
You guys are great x x
 
First let me state.
I LOVE THE NEW AVATAR!

My understandings that 6mp is easier on the liver.
I guess if LDN fails, we'll start there for Grace.
How are you doing?
 
I think side effects are hit or miss.
As far as liver it depends again on the kid .
We did 6-mp for DS
No regrets no real side effects.
Blood work showed it went to his liver at one point
So we had to lower the dose and add allopurinol.
 
No experience with 6MP, Jack was on Imuran/Aza with no side effects, had a hard time getting to theraputic levels though and had to add alipurinol.
 
DS started Aza three weeks ago and so far he hasn't had any side effects.

Can Lucy swallow pills? I know 6MP comes in a liquid version, but I don't know I'd Aza does?

Something to consider.
 
In my understanding AZA is a precursor to 6-MP and has to be metabolized to 6-MP. I don't think there is much difference beyond that. 6MP seems to be a simple med to take for Jaedyn and she's not having any problems with it...
 
We have had great success with 6mp. I was so afraid of it at first but it has really worked well and no side effects. I hope Lucy gets to feeling better very soon. ((((Hugs)))
 
Hi MLS,
Wanted to see how you both are doing? I have not been around so much as we have had a lot going on and my own health issues have been giving me issues.
 
Carol is right about the Aza/6mp, aside from the metabolism aspect of things they are basically the same. They have the same side effects but not tolerating one doesn't mean you won't tolerate the other! Seems crazy ay?

I am not sure of the presentations available but I would think whichever is easier to prescribe to a 4 year old would be the way to go. Given that they are the same then I would then go to whichever is easier to metabolise and you would have to think that would be 6MP.

Both of my kids are much older but neither has had issues with Imuran.

Thinking of you both, :heart:

Dusty. xxx
 
Hi everyone
Thank you for the advise on the meds
Lucy goes for GI appointment Monday
Where we will get decision on which
Med she will start.
She is still on 10 mg of pred a day
 
After appointment with GI
They think it will be better that Lucy starts
6mp as they said you can get it
In liquid form which will be easier to give.
Anyone know if there are any tests before
You start 6mp? Docs mentioned some bloods
But didn't say what for?
 
Yes, they get a TPMT or something like that to see if she has the proper enzymes, and then check 6MP metabolite levels after 2 weeks
 
Yes, Andrew had the TPMT test done before he started. As for bloods we had them weekly for 8 weeks then fortnightly for a month and now they are monthly. They keep a close eye on neutrophils and liver function (ALT)
 
Hi all
An update .
Lucy has appointment at GI on
Tuesday2nd she will be starting 6mp.
Not sure of dose at the moment.
We have mixed feelings about starting
This with side affects ect.
How did your kids do on 6mp?
How longdoes it take to work?
 
DS took 6-mp for 8 months.
He did ok but never got rid of minor symptoms.
His body kept wanting to send it to his liver.gi was on top of it though so not a real issue
So we had to add allopurinol
But overall very easy drug.
Just wasn't strong enough or the right drug for DS
Good luck
 
DS isn't on 6mp, bit it's sister drug, Azathioprine, which I've read tends to have more side effects than 6mp. He didn't experience any notable side effects. A weird joint pain here or there that lasted a hour, maybe. Besides that, nothing. Then, much to our surprise, his labs showed he was at therapeutic levels already at only 5 weeks. We are at seven weeks now and he feels great. For most people it usually take 2-6 months.

Just be sure to get regular lab work done to monitor her liver, etc. Your GI will give you a schedule to follow. Weekly, then bi-weekly, then monthly. Very important. Also, if she does have side effects, you can stop this drug instantly (per your GI) and the side effects will clear up quickly.

Good luck!
 
Good luck with the 6mp. Andrew is on 6mp and so far apart from some tiredness he is fine. We couldn't really tell how he was doing as he doesn't have any symptoms right now but in the 4 months he has taken the 6mp his faecal calprotectin has gone from 650 to 80 which is great.
 
Hey Mls...:ghug:

6mp will normally take at least 3 months to become fully therapeutic and for some will it stretch out to 6 months.

My two are also on the parent drug Imuran. Both of my children are in remission following surgery, I don't know if Imuran has contributed to this state but since it is being used as a maintenance medication I have to think it is having some sort of positive effect! The main thing though is they have not had any ill effects from it. Sarah has been on it for 7 years and Matt for 2.5 years. They have bloods done every 2 months to check that all is okay with their white cell counts and liver function.

Good luck Mls! I hope all goes well for Lucy. :heart:

Dusty. xxx
 
Jaedyn is taking 6 MP with no side effects seen yet (started or May). Her calprotectin is down from 600 to 28 or so - but that might be the EEN and GF diet too
 

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