Another kid switching to Remicade

[malorymug]

My boy is switching from 6mp to remicade, with mixed emotions. We went into the appointment knowing that his health wasn't great and that we didn't want this to be the new normal (lost weight, fatigued with lots of joint pain). Reading so many success stories about remicade, I really wanted it for my son. But ugh, it was so hard to hear the GI say remicade.

Actually I'm fairly certain nothing the doctor said today would have made me happy. I guess I'm glad he agrees with me that the 6mp isn't strong enough. I guess I would have been angry if he sent us home and said, "yup, this is the best we can hope for".

I hope we aren't given up too early (7 months). I'm lamenting losing the 1 pill a day regime. But still super hopeful to get a healthy kid.

It is sad when the doctor asked a 14 year old how he is feeling and he says "good", and the truth is he hadn't slept in two nights, takes tylenol for joint pain 3-4 times a day, and rarely eat 3 meals in a row. This is not "good"! My kid has adapted to feeling crappy and has no idea how other kids feel.

Thanks for letting me ramble. Thanks for posting the good stuff about remicade, it made hearing the news much better.

 

[crohnsinct]

I hope it is magic for him! Works great for my older daughter. My younger one was just dx'd Friday and a piece of me wants to hear Remicade because we have had such a good run with it.

One every 4 to 8 weeks is great. The rest of the time you forget you have Crohns.. well except for supplements and such. I especially like no chance at forgetting a dose because the infusion nurses are on it!

 

[Worried mama]

Yup, just got off the phone with the hospital to set up our first appointment. 2 weeks til we go for the first infusion. There is a part of me that is excited and hopeful that it will work wonders and the other part that is just terrified. My son always says he feels fine. But I do wonder at times what 'fine' really means to him.

 

[malorymug]

Worried mama, did you have any troubles with insurance? My GI office says they are seeing denials all over the place. Insurance is wanting everyone to try Humira first. Is this political/marketing or just their protocol? I'm not sure, but I'm not emotionally ready for Humira.

We aren't scheduling until we hear from insurance.

Best of luck with your son's infusion. Looking forward to hearing good stories.

 

[DanceMom]

We've done daily pills, weekly injections, and now infusions every 4 weeks. My daughter much prefers the infusions. She has the option of doing weekly subQ at home but just isn't interested. She doesn't mind going to the hospital for treatment (and getting spoiled) and prefers to keep "medical things" out of our home as much as possible.

Change is always scary at first, but hopefully this will be that magic medicine that your son needs to thrive!

 

[Jenn]

Yep, we've all felt the same way, it's so hard, but can be so worth it. And better sooner than later, we waited until a new fistula and abscess formed. Hope it works great for your son!

 

[Worried mama]

I believe the GI called first to verify insurance, but maybe I should double check on that. I didn't think it would be an issue, but you never know.

 

[Maya142]

My daughters both loved Remicade, they thought it was much easier (and much less painful) than Humira.

The one pill a day does seem convenient at first, but when Remicade does its magic, the inconvenience of the infusions seems minor in comparison to having your happy, healthy kid back. Some kids feel better immediately, but others take longer-- it did take my daughter 3 infusions or so before we saw a real improvement.

Good luck!!

 

[Jmrogers4]

So understand that feeling. I hope it works wonders for him. My son says he didn't realize what he was feeling wasn't normal before remicade as that was normal for him

 

[Pilgrim]

What I also found amazing as a parent was what I had gotten used to.

Your kid gets used to pain, exhaustion, and so on... and we get used to underlying anxiety about each meal, each bowel movement. And greeting our child with, "How are you feeling honey?" or "how was your poop?"

We didn't do Remicade, but opted for Humira. Honestly, I couldn't believe the difference and still can't and it's only been a few weeks. It started to work immediately for her. I'm so pleased with the results, that I sometimes forget to worry about side effects. Now I can actually think of my child starting school next year without dread.

So, I hope Remicade does the same thing for you and your son. Allows some anxiety and pain to go away and some other aspects of life to fill the void.

 

[Farmwife]

I use to worry about these new drugs and then she started them.
Now I worry about them wearing off to soon.
Next I'll worry about them stop working all together.
Yup, I worry a lot. Lol
Remicade has been a huge blessing.
Grace likes going to the infusion center and getting spoiled. She's a princess so it comes naturally.

 

[DustyKat]

Sending much luck and well wishes that Remicade weaves its magic for your lad!

Good luck!

Dusty. :heart:

 

[Mehita]

We did six months on Aza before switching to Remicade, but DS had gotten progressively worse on Aza so it was an obvious next step for him. He loves Remicade and it's worked very well - life changing, even. Growth started almost immediately and hasn't atopped. I hope it works as well for your son!

 

[malorymug]

You all give me so much hope!! Thank you for all your kind words and success stories. And, Pilgrim, your post made me cry. Yes, I guess we parents have adapted too. LOVE the understanding on this board!

 

[araceli]

I hope remicade does wonders for your son. It has been the ONE for my daughter.

 

[myboy12]

We have had great results thus far with Remicade. Taking the step is hard, but the results are worth it! Good luck!

 

[malorymug]

Argh! Xray and tb quanferron blood test came back indeterminate. Off to pulmonologist. Did we ready need another doc in the mix?

 

[crohnsinct]

Oh no! Sorry to hear about the delay but better safe than sorry eh?

 

[Maya142]

My daughter's TB test (the skin test) came back indeterminate too, but her quanteferon and chest x-ray were negative. We were sent to two infectious disease doctors who couldn't figure out why the skin test had been positibe but said since the others were negative we could start her on Humira.

It was a very frustrating process. Hang in there! It really is better to be safe but of course you want him to feel better as soon as possible. Sending hugs.

 

[my little penguin]

Paging Dusty
I know she had some weird tb results before

 

[malorymug]

I definitely want to be safe. It's just, ugh, you guys know.

 

[DustyKat]

Matt had Quantiferon Gold done about 6 months ago and I read up on it a bit at that time.

IIRC an indeterminate result can be caused by things such as: improper collection, elevated CRP, a malfunctioning immune system including immune suppression.

As to me? My experience was a bit different to what you are going through. Well back in the day when I started nursing there was only the skin test to determine exposure, plus chest X-Ray, and we had to have a BCG immunisation done as there was a large infectious diseases unit at the hospital. So I had the mantoux skin test done and it was negative and I was then given the BCG. I had no reaction to it whatsoever, you are supposed to get something akin to smaller smallpox immunisation type lesion. So another mantoux was done, negative again so given another BCG that again resulted in no reaction. Another mantoux was done and still negative. They gave me a third and final BCG to which I had the teeniest reaction but a failure by anyone’s measure. They wouldn’t do another mantoux and rolled their eyes saying…You must be immune by now! Off you go! :eek2: :lol:

Good luck hun and I hope the wait for solid answers isn’t too long! :ghug:

Dusty. xxx

 

[crohnsinct]

Well back in the day when I started nursing
Dusty. xxx

Oh man! Really?! Can I leave this one alone? :rof:

 

[my little penguin]

So many comments so little time
Must not hijack thread ......

 

[malorymug]

Thanks for the explanation Dusty. It makes me feel better about the quantiferon. I wonder why they perform that test on kids that have high CRP.

Still a little freaked out about "nodular density in the lower left lung" on the xray. I'm sure we will get that cleared up soon. And had the skin test done last night.

I'm all about the humor, hijack away MLP

 

[Farmwife]

I knew you would want it hijacked.:rof:

 

[DustyKat]

Go on then you lot! Do your best! :lol: :kissgrits:

@malorymug. Unfortunately when biologics are being considered there is a very high likelihood you are flaring and hence a high CRP is also likely.

Pulmonary EIM’s, although on the rarer side, do exist. We have members pop up occasionally that have chest X-Ray findings of lung nodules that are result of EIM inflammation.

Dusty. xxx

 

[malorymug]

I thought I'd post an update. I know a lot of us are just starting this journey and the unknown is so scary.

We had our first remicade infusion on Friday and all in all it went well.

We had the TB fire drill earlier in the week. Quantiferon blood test was indeterminate and xray showed dense nodules. So we ran around to get a last minute skin (PPD) test and a CT scan of the lung. Both showed no TB. So Friday morning we were clear to start the infusion.

It took three times to start the IV (he drank 18 ounces of water on the drive, even), but the IV specialty team was amazing.

They premedicated with tylenol, benedryl, solumedrol. He slept through a lot of it. When he wasn't sleeping he was eating and eating and eating.

We had singing cowboys come through and sing a few songs and gave all the kids cowboy hats. My boy slept through it, but it was a nice distraction for me.

It took a total of 7 hours (iv troubles took 1). And we bravely left and drove 3 hours north to go fly fishing for the long weekend. He has been great. Appetite and go going all weekend. I hadn't realized he would get steroids. We love steroids.