Guesses anyone?

[AZMOM]

Hi all - I got a message from Claire's ped gi today. I'm supposed to "call him next week to talk about a new medication designed to improve the effectiveness of the 6MP without stressing Claire's liver". So of course, I will call. Any guesses? Better not be Pentasa.....or he's forgetting that has had us in liver trouble too! :ymad::ymad:

Overall Claire is having a good week.....I hope you are too. :smile:

Hugs,

 

[Dexky]

I just wonder why the ^&*# he didn't mention that to us before we moved on to Humira???

Glad she's having a good last week of school J

 

[Crohn's Mom]

I've got nothin...:eek2:

I was even trying to research some to see if I could find something, but all I find is the usual Remicade ~ 6mp treatment plan.

Let us know...and best of luck !
Try not to hurt him if he says Pentasa ! :rof:

 

[Welsh-bird]

Hi Azmom,
I could be wide off the mark here, but I too had continual probs with elevated liver enzymes whilst on 6MP, with it being stopped numerous times for my ALT to recover. Just before I began chemo, I had a discussion with my gastro about lowering my 6MP and introducing a drug caled Allopurinol. They are contraindicated, but if I understood it right, by taking a lower dose of 6MP the Allopurinol increased it's effects, therefore I wouldn't be having the toxicity probs with my liver, but still getting a high enough dose of 6MP for it to be effective. Sorry if this sounds jumbled- head not in gear this morning.

I'm sure Dr Dusty should be able to help more, and clarify as to if the above is correct.

 

[DustyKat]

Oh hell, now the pressure is on Welshy!:lol:

Actually, I was thinking about this earlier J but dismissed it because it's not a new medication! But maybe Welshy is right and that is what your doc is thinking about. Allopurinol does enhance the effect of 6mp and for patients that are taking it for gout and are on also on Azathioprine or 6mp then the dose of the these need to be reduced to a quarter of what would normally be prescribed.

Here is an old thread about it...

http://www.crohnsforum.com/showthread.php?t=14188&highlight=allopurinol+imuran

Much love, :Karl:
Dusty. xxxxxxxx

 

[AZMOM]

You know I was thinking today that perhaps he meant "new" to Claire and not new to the whole world. Thanks Welsh-bird and Dr Dusty for at least giving me something to read about until I speak with him next week.

Little Missy almost didn't make it to her last day of school because she was up all night going to the bathroom. :ymad: But, she powered through......

I'll keep you posted!

Love J.

 

[DustyKat]

Good luck for next week J!

Kudos to Claire! What an absolute sweetheart and trooper she is...:thumleft::thumleft::thumleft:

Much love, :Karl:
Dusty. xxxxxxxx

 

[AZMOM]

You're too good to me Dusty. (See Dex, she's nice to me -lol)

The phone call cant come soon enough for me. She's not had a great day. We have the continued frequency, totally liquid and the blood accompanied by plenty of stomach complaints......ugh. I'm sure glad schools out!

Love to all-

 

[Crohn's Mom]

Thinking about you girls !
I hope the doc's (new) remedy does the trick so Claire can enjoy her summer break!:rosette1:

Hang in there momma!

luv to you!
~T~

 

[DustyKat]

Oh hell J, I'm so sorry to hear that Claire is going through this...boo big time!

Come on Tuesday 8.30am! We need action!

Thinking of you...:hug:
Dusty. xxxxxxxx

 

[AZMOM]

Oh yes I need his ass to move as fast as hers (oh that was SO bad). We've stayed close to home all weekend because she's averaging 5-6 "gotta go now" episodes a day. And napping. So you know she isn't at the top of her game. We went to see Kung Fu Panda II yesterday and she slept through half of it.....woke up at the end, smiled and said "That was a good movie, right Mom?"

I love this girl too much. I KNOW you all can relate.

J.

 

[DustyKat]

Thinking of you J and your little angel. I hope you get your answers very soon hun...:hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[MomofIBD's]

((((((((((((((Julie))))))))))))))))) & ((((((((((((((((Claire))))))))))))))))))!!!! I am so hoping you get some news that makes things get back to some normalcy!

 

[Crohn's Mom]

It's Tuesday....any news yet hun ??

Thinking of you both! :ghug::ghug:

luv to you~T~

 

[Runninglady]

I hope all went well today. X

 

[AZMOM]

Okay - y'all ready to march on the office with me? LOL They have given him my message, he has my cell and I'm waiting. If there's no return call tomorrow, let the march begin!

Wish I had news other than I'm waiting.......

J.

 

[DustyKat]

I'm in!!! I don't mind the waiting news as long as there's a phone call at the end of it!

ika:.......yeah, that's me marching.

Dusty. xxxxxxxx

 

[Dexky]

Isn't Wednesday Acra's scope day? If it is, I wouldn't hold my breath! I don't see why he couldn't have given you the name of this mystery med so you could do your research! We both need to keep in mind any time we're speaking with Acra...make the most of it cause it may be a while until we get another chance!!

 

[Crohn's Mom]

I've got my boots on and ready! Anytime dear...anytime !!
:hang:
:ghug::ghug:

 

[DustyKat]

Do I need to put my marching boots on and grab the placard J?

Love ya, :wub:
Dusty. xxxxxxx

 

[AZMOM]

Well he finally got back with me today. . Put the boots and placard back in the closet Dusy & T.

The plan is to try to boost the 6MP with Allopurinol. The big risk, of course, is shutting down the white blood cell production. So the 6MP dose goes in half of what it was when it irritated her liver. So shell just be taking 25mg e/o day along with the Allopurinol. She will have weekly lab work And we'll check the 6MP metabolites in 4 weeks.

He said he learned about this at a conference a couple of weeks ago and thought of Claire. The delay this week was because he wanted to talk to a colleague who had used this medication combo (successfully!) with several kids who were not candidates for biologics and experienced liver issues secondary to 6MP.

His other concern is that her flare could worsen temporarily. Ugh. So we are going to increase her Entocort to 9mg in hopes to hold steady. He feels if that doesn't work, we'll have to resort to short term pred. I told him we want what's best for Claire bu that I need a prednisone exit strategy before I'm willing to start. We are not getting in another 5 month steroid cycle if there is ANY way to avoid it.

Thanks again Dusty for the heads up - it helped me be prepared for today.

Love,

J.

 

[DustyKat]

Hey J,

Oh man mate, I so hope this works for Claire. I can see you have all the i's dotted and t's crossed, good for you. Claire deserves the best and she's got it! :medal1:

Everything crossed for calm weather and smooth sailing...

Love ya, :hug:
Dusty. xxxxxxxx

 

[Crohn's Mom]

Awe darn...I really wanted to keep the boots on for a while ! :rof:

Seriously tho, I hope more than anything this new treatment plan works for Claire!
It will! It will! :kiss:


lots of luv and hugs ! xoxoxox
~T~

 

[Dexky]

I hope this combo works for her J! Poor Claire and those weekly bloods, I wish they didn't have to be so tough!! It's good she's out of school though. Mom can keep an extra special eagle eye on her while you get her smoothed out!!

 

[Sue-2009]

Well...I've been on this regime for about 1 1/2 year...I will keep my whole self crossed in hopes this works for your kid! This has to be so hard for you to watch! The entocort held my crohns at bay while the 6mp kicked in...Keep us posted. IF you read my posts..you will see it does take time to kick in...Hope you and her can be more patient than me! Good luck! Sue

 

[AZMOM]

At the pharmacy picking up the new drugs....cross you fingers!!!!

J.

 

[DustyKat]

​

DONE!​

Wishing Claire all the luck in the world that the new combo works J!

Always thinking of you, :hug:
Dusty. xxxxxxxx

 

[Dexky]

Did Dr. A give you any guess as to how long before Claire should see positive results? I know he said the flare may temp. worsen. Hopefully, since 6mp is already in her system, it won't take long XXXXX (fingers), XXXXX(toes), and X(eyes)! Come on Claire!!!

 

[AZMOM]

Well Dex - no. Basically she's his "first" on this regimen so I think he has no idea. Besides the weekly labs, he wants to talk on the phone weekly. Thanks for everyone's wellwishes, prayers & crossed appendages!!

J.

 

[DustyKat]

Good luck hun, we're all thinkin' of ya!

:goodluck::goodluck::goodluck:

Loads a love, :wub:
Dusty. xxxxxxxx

 

[Crohn's Mom]

Ditto what Dusty said !!
Always thinking of you !

xoxoxoxox
~T~

 

[Sue-2009]

AZ mom...I just got my blood tests results back. I go every three months. Although my blood work isn't perfect, I am okay on this. It has been pretty good. I hope this works for you! I am sure she is going to do well. My dr says she has had more than a few on this combination. And at the U of M, that is the regime for ped's with Crohns. A big hut to the mom, and I am sure the sweety is going to do well....Crossed my whole body for you both. Peace, Sue

 

[Dexky]

Hey J, just wondering if you're seeing any change? I can be impatient!!

 

[DustyKat]

No, really Dex? You impatient? I don't believe it!

Dusty.

 

[Crohn's Mom]

Awe J....just hoping you are seeing some improvement by now !!
Or at least, no negative side affects ...

Much love to you!!
~T~

 

[Sue-2009]

AZ Mom? Hows your little one?
Sue

 

[AZMOM]

Sue - Claire is in the hospital, unfortunately. My "well boo" thread will get you up to date.

J.