Out of Left Field

[Dexky]

Well, our GI actually called today and talked to my wife. We were led to believe that Mehtotrexate would be our next stop, but now he wants to put EJ on Humira!! It seems the biopsies from 2 weeks ago showed more inflammation than the pictures revealed.

The liver spec wants to add a beta-blocker to reduce EJ's blood pressure to help manage the enlarged spleen and the vericese vein in his esophagus. He's to be on that for 6 months then have another upper GI to see how it's going.

I haven't looked at the Humira club in a long time but I don't remember any mention of children on it. It, of course, has the usual list of possible sides. Any body have any input?

 

[Crohn's 35]

Hey Mark, this is just my opinion and not sure from a young one using it but from my experience Humira was far milder than Remi and Methotrexate. I reacted to both but Methotrexate gave me headaches and nausea all the time. It is an old drug making a comeback because the biologics dont work for everyone. 6mp did nasty things to my liver so now taking Gingerforce with any meds, helps keep my intestines healthier and liver and kidneys.

I am in with the vote on the Humira, but I was only on it 6 months and stopped working. My body resists everything except FAT! :shifty-t:

Let us know what you are deciding. If he doesn't like needles that will create a problem, not me, so easy.

 

[Dexky]

Needles don't bother him Penny!! Thanks for the reply!!

 

[Crohn's 35]

Since he is like me I opted for the syringe, less pain and more control for me. Good luck~!

 

[DustyKat]

Hey Dex,

Don'y ya just hate when the doc rings you!

You may remember that had things been different for Matt we may have been looking at Humira as well. To be honest mate, after all he has been going through I am seeing Humira in totally different light to two months ago. Well you know I will be as useless as a third ball on a greyhound bitch when it comes to giving advice on side effects so I won't even go there! But Brian'sMom put up a great link about the risks of the various medications, sure helps to put things into perspective;

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

Thinking of you guys, :hug:
Dusty

 

[AndiGirl]

I have a friend on Humira and it is working well for her. Hopefully the treatment will work for EJ.

 

[Entchen]

Hi Mark: Sending healing thoughts to EJ and best wishes for a smooth journey as you look at trying a new med regime.

 

[AZMOM]

Mark - Some kids have a complete response to biologics. You might recall me praising Enbrel. When we were just dealing with the RA years ago, Enbrel was our miracle. Total remission. So, my eternally optimistic outlook is that the Humira will just do that for EJ!!! I'm sure he'll be fine with the needles - our kids are tough.

Which beta blocker? Do you remember?

J.

 

[AntsMommy]

Hi Mark,

We have no experience with this but just wanted to send you guys hugs and hope that if you decide to use Humira, that it provides EJ the relief he needs and you guys deserve!

 

[Dexky]

Which beta blocker? Do you remember?

Hey Julie, I was trying to answer this yesterday when our stupid PC locked up on me:ymad:. It is Nadolol, 20 mg/daily (I think). Doc says it's a low dose. He's going to start it this morning and is to have his bp checked after a week.

Not sure when we are to start Humira but he's to take his 6mp up until that day. The first injection has to be at Vanderbilt. We'll see...

 

[Zoodles]

My son is on Humira and we also skipped Remicade. We had complete response and he's been on Humira for roughly 9 months

 

[Astra]

Hiya Mark

Good luck with whatever you choose to do, Humira might be 'The One', you'll never know until you try, and if it doesn't work, then at least you tried it.
I don't know much about the biologics, only what we've read on here, but I do read lots of successes with it.
Sending a big hug your way, not sent one to you for yonks!
xxxx

 

[Crohns08]

I started Humira right before my eighteenth birthday when things were really bad for me. It took a few weeks before it really kicked in, but when it did I felt like I got my life back. It's definitely worth a shot. I know looking at some of these potential side effects can be scary but all of these drugs that treat crohn's disease have some pretty awful side effects to be honest. A friend of mine who is sixteen years old will hopefully be starting remicade soon. Good luck with whatever decision you make. I know it must be hard to see your son sick like this. My parents were always miserable to see me suffer.

 

[e13 boy]

Hey Mark, this is just my opinion and not sure from a young one using it but from my experience Humira was far milder than Remi and Methotrexate. I reacted to both but Methotrexate gave me headaches and nausea all the time. It is an old drug making a comeback because the biologics dont work for everyone. 6mp did nasty things to my liver so now taking Gingerforce with any meds, helps keep my intestines healthier and liver and kidneys.

I am in with the vote on the Humira, but I was only on it 6 months and stopped working. My body resists everything except FAT! :shifty-t:

Let us know what you are deciding. If he doesn't like needles that will create a problem, not me, so easy.

Hi Pen

What is Gingerforce?

 

[Crohn's 35]

Gingerforce is a superlative antiinflammatory for intestines and also protects, liver, kidneys and urinary track. It is made bye New Chapter and it is called gingerforce, you can buy it cheap in Amazon.com, but they have a website on "New Chapter" but they dont sell it. I have been finding it works great!!!! Hope this helps!

 

[AZMOM]

Mark - Do you all have a start date??

J.

 

[girlygirl]

Hi Mark,

Don't have experience with that one yet.. but wanted to send my love and well wishes to you and EJ!

~Mon~

 

[Dexky]

Hey M, where ya been? Thank you!

Julie, my wife is at violin with my daughter but unless she heard something today, then no date yet. Did you know anything about the Nadolol?

 

[ameslouise]

Hi Mark, just wanted to chime in and wish EJ and your family good luck with the Humira. I hope it is a big help for him. I haven't had any side effects to date and it's been about 9 months for me.

Good luck! We're all rootin' for you and EJ!!

xo - Ames

 

[AZMOM]

Mark - Conveniently I have a best friend that is uber-pharmacist. She is a frequent presenter at big conferences, new VP promoted from corporate pharm director of all our hospitals and teaches the medications courses for nurse practitioners. This is a looooooooooong way of telling you that I'm going to ask her about it and especially the combo of the two. I'll let you know what feedback she gives me. She's terrific!! and always up to date on the latest.

And, if all else fails, she can mix a mean martini and I'll share.

J.

 

[girlygirl]

Hey M, where ya been? Thank you!

Julie, my wife is at violin with my daughter but unless she heard something today, then no date yet. Did you know anything about the Nadolol?

HI Mark,

I've been busy with a new job.. haven't logged on too much.. Started the new job a few months ago. things are going well I suppose. Just hanging in there.. anywho.. i missed you guys.. i couldn't stay gone for long!!:ybiggrin:

and i sure dont.. haven't had any experience with Nadolol yet.. but i'll surely let you know if I hear anything about it.. good , or bad..

 

[Dexky]

And, if all else fails, she can mix a mean martini and I'll share.

J.

Make mine a margarita, and it's a date!! Thanks Julie!

 

[AZMOM]

We Kentuckians think alike. I loooooooooooooove margaritas. :wink: I'll tell MJ she needs to switch her poison. Left her a message this morning and I'm sure she'll call me.

In the meantime, EJ feel good?

 

[Guest]

also no experience of Humira here, but reading everyone else's comments, it does sound like it's proven itself to be effective for many people.... so i hope it does the trick for EJ, and that he tolerates that and the other meds ok. wish him a great big 'good luck' from us!

 

[Dexky]

EJ continues to feel great so no worries there!! Thanks guys, you all are the best!!

 

[AndiGirl]

That's terrific!

 

[Brian'sMom]

Mark,
My son's on Humira after an allergic response to Remicade. He's doing good now. Gaining weight and energy. SED rate is down to 23 from being 73 and CRP is down from 3.6 to .6 We started Humira on Jan 28th. I spent lots of time talking to Zoodles. She's great. My husband does the shots, we do them on Friday every 2 weeks...get into pajamas, followed by a fun movie night. The anticipation is the part my son doesn't like...the 5 min of icing the leg. After its done, and its quick, he's fine, shot doesn't make him cry. We did 2 full Remicade infusions, then on the 3rd he had the allergic response, they tried again after 4 days...had another allergic response. So, 4 in all- My son, who is now 11 says he prefers the Humira. He likes doing it at home and he likes Dad doing it and it takes seconds for the shot vs hours of infusion.

 

[DustyKat]

Hey Brian's Mom, :bigwave:

It is brilliant to hear that Brian is doing so well on Humira, what a fab kid you have but then they do say the apple never falls from the tree! :wink:

Wishing for you all that the great times keep on keeping on! :ybiggrin:

Much love, :hug:
Dusty

 

[AndiGirl]

I'm so glad to hear that Brian is doing well on Humira. Comfort and Rest to your family.

 

[Dexky]

Thanks Mom! We've been told we have to get a negative TB test before the insurance will approve the Humira. EJ has a scheduled appt. with the GI on 4/13 so I don't think we will start before then. He's still doing great though, playing baseball and feeling good!!