Now we add Humira for the Little Farm Girl

[Farmwife]

Grace's rheumatologist is adding humira.

Now she'll be on humira, mtx and low dose prednisone.:yrolleyes:

IBD wise I thought she was stable but now she's back to constipation and belly cramps.
JRA wise it's attacking almost every joint. :confused2:

How could a girl that no doc wanted to help be on this many big drugs.:ymad:
Right now I don't now if I scream or cry.


They said the syringes will be pre-filled.
Is there anything else I should be asking for?

 

[DanceMom]

No experience with Humira. Big hugs though!

 

[Maya142]

The Humira+mtx combination was miraculous last time M was on it. She became a totally different kid, played on her high school soccer and lacrosse teams and was involved in many extracurriculars. It took a while to work (5-6 months) but once it did, it was amazing. Even her MRIs (of her SI joints and knee) started looking better, which we did not expect (thought the damage was permanent).

The shot is very painful as I'm sure you have heard. Ice + chocolate+ watching tv is what we do.

Hoping Humira will do the trick for Grace and she can go back to being a regular princess.:ghug:
Hang in there!

 

[Essieluv]

Emla cream was a lifesaver when I was on Humira. I just put it on the injection site an hour before the shot and it numbed it up pretty well. Good luck!

 

[Sascot]

Good luck. I really hope this does the trick! Thinking of you both

 

[my little penguin]

Ask the Rheumo about adding lidocaine to the humira shot .
But you need the humira syringe not the pen script.

I posted an article about it.
It decreases the pain from the humira meds immensely .
https://acr.confex.com/acr/2008/webprogram/Paper3820.html

 

[Farmwife]

They said it was pre-filled. They said it had to come from a certain pharmacy and wait to hear. What kind would that be?

Did your kids do loading doses for humira?

 

[my little penguin]

All are Prefilled syringe and the humira pen.
Check our humira a website
My humira program will cover the cost of the difference between your insurance copay up to 2500 for the first script ( loading dose or single script for the year ) so you only pay $5.
Then up to $500 of your copay .
Get the my humira travel kit and sharps collection container they will pay to ship them back to my humira .

Most insurances require prior approval and authorization for drugs like humira .
Some pharmacy drug programs like express scripts , cvs , Medco etc...
Have "specialty " pharmacy division to handle exspensive injectables.
The insurance has to approve it first .
Then you call to have it direct shipped to you overnight so it can be refrigerated on arrival ( it comes in a cooler).
You have to keep calling for each shipment a few days before you want it shipped.
This can take a while or be a short bit - ours took close to three weeks to approve .

Then myhumira program acts as a secondary insurance .( you have to sign up though - its free).


Lidocaine comes in a seperate vial / syringe the Rheumo will have to explain what needs to be done to mix them.

 

[Maya142]

Yes, M did the loading dose. Her rheumatologist doesn't do loading doses (actually it seems like most rheumatologists don't, my older daughter did not have to do a loading dose) but since M's GI prescribed it, she did 4 shots on one day, 2 shots two weeks later and now a shot every week. The 4 shots on one day was NOT fun.

 

[Farmwife]

Maya her rheumatologist must be the same way.
I'm calling her GI tomorrow. There's no loading doses that I recall but since her GI stuff is improving for the most part maybe the GI will agree she doesn't need to.

Mlp thankfully both Grace's insurances will cover it. The nurse said it's already approved and we should be starting soon.

 

[Maya142]

I was actually glad M did the loading dose even though most of her GI symptoms are better. I'm hoping Humira will kick in faster and help her joints… It hasn't happened yet though.

 

[dannysmom]

I hope the Humira helps!! ... it is for JRA and IBD ... big hugs to you!

 

[Farmwife]

Both, the GI and rheumatologist agreed to it at the beginning of the treatment plan
I just wonder if the GI knows it's been finalized by the rheumatologist?
:ymad:Why do I always have to check and be the mom with all these specialist.:yfaint:

 

[kimmidwife]

I am so sorry to hear this! But hopefully it will really help. Definitly ask about something to help with the shot pain such as emla cream. If they approve it you just apply a very small amount to the area about 30 minutes prior. Caitlyn couldn't tolerate the shots. I really hope she gets lasting improvement with this.

 

[Farmwife]

EEN
Would it work in this case???
The low dose ped is being used as a bridge therapy until the humira works.
All these meds are because of her Ibd and JRA. However I think it's the JRA that's making the med change possible

So would EEN help as a bridge therapy?

I'm calling the GI to get his take on it.

 

[my little penguin]

EEN doesn't tend to be a treatment for joint inflammation even as a bridge .
Typically its pred or shots in the joints .
Good luck
Let us know what both docs ( Rheumo and GI think )
They need to both be on board with the plan .
Especially Rheumo since its her JIA that is flaring .

 

[Suzysu]

I hope she copes OK with the jabs - I think def get some EMLA to help, I'm hoping that this will work for her xx

 

[DustyKat]

Agree with mlp re: EEN

Since you are dealing with inflammation associated with two different aetiologies then EEN will not work as a bridge for both.

Joint pain as an EIM of IBD then it is a yes to EEN but not as when it due to JRA.

Good luck FW, I hope the Humira does the trick. Fingers, toes and everything else crossed!

Dusty. xxx

 

[polly13]

Farm wife - when you hear the big drugs being mentioned it is like a bomb going off in your brain and firing in all directions ( well it was for me!), but humira and metho has worked so well for Lucy. Our syringes aren't pre filled so we have to draw it up ourselves - they don't come pre loaded here in the dosage. We had a nurse come and train us and administer the first few shots. I find icing up the area does help also get Lucy to count or say the alphabet to distract her while the shot is going in. The first few injections were hard and it distressed her but now she just accepts it and doesn't even cry (did I mention my daughter is a superstar ). It has been the miracle combo for Lucy so hopefully grace will be the same. She had a loading dose

 

[Jmrogers4]

I hope it works farmwife, Princess Grace deserves some relief.

 

[izzi'smom]

Leave the shot out for 20 minutes pre-injection (it needs refrigerated). Ice the area for 10 (belly or leg...my leg hurt for 24 hours when I took it there but Izz preferred the leg). Get pre-filled syringes, not pens...you can inject more slowly. (It burns-if she can stand for you to inject a bit at a time, the resulting pain will be lessened. It used to take me over a minute to inject mine. Hugs, mama, and hoping Humira added to your mix will be an answered prayer for your Gracie! <3

 

[Farmwife]

Thanks Angie.

Update
Grace had her seventh shot of mtx. We've had a set back in the GI area. Constipation and abdominal pains sneaking back in.
I'm glad she's starting humira. Hopefully it will work better.

As far as the full EEN, I guess not right now. She's already on partial EEN and her appetite is going in a down ward trend right now. So no need to take away the few foods she can eat.

 

[mom2277]

I'm so sorry to hear that Grace is needing yet more "big guns." I pray that they quickly bring her relief, though, and if it's possible, be a short-lived necessity.

 

[Gmama]

So sorry you and sweet Grace are going through this. Prayers that this is your miracle!
When we did Humira, same as above, pull the shot out ahead of time, and the trick for LJ seemed to be go REALLY slow. Which was really hard for me giving it to him because I knew it burned & I just wanted to get it over with!
He wanted his leg, but I think that was just because he is so skinny there is nothing to grab on to around his waist.
Best wishes and big hugs! You can do it!

 

[vtfamily]

The shot is very painful as I'm sure you have heard. Ice + chocolate+ watching tv is what we do.

The shot is painful. Gus never got used to it. Icing did help. Mostly he needed a fair amount of mama's TLC afterward.

Keep track of injection sites and move them around.

I hope Humira does the trick for you!!
Hugs,
Cheryl VT

 

[Gmama]

Hey FW,
Just wanted to see how you and your sweet Grace are doing?
When is your first loading dose of Humira?
Big hugs to you both!:ghug:

 

[CrohnsKidMom]

Hope the Humira works well and quickly, and this will be the magic combo for Grace.

 

[vtfamily]

How is it going?

 

[Maya142]

Thinking of you and little Grace!

 

[Brian'sMom]

We used ice and emla. My son liked the pens because it was quick. Since it burns he wanted it over quick. We tried both. We did humira for 2 1/2 years.