Starting humira and methotrexate

[polly13]

Hi everybody, I haven't been around for a while but have been lurking on occasions. It's six weeks now since Lucy had her mmr so we are ready to re- start treatment again. It's now 13 weeks since she has had any of the heavy duty drugs that we are all so used to. She held her own for about 8 weeks and we were hoping and praying that by some miracle we wouldn't need to start again, however the last 4 weeks she has been getting progressively worse and I think we are now again at square 1 - (I really thought infliximab was going to get us to square 2!).

So here we are a full two years post diagnosis and further away from remission than ever, Lucy is still in pain and now can only barely tolerate sitting on her pony (that she loves more than me & dh lol) for a few minutes, she is starting school in September and I don't think she will be able to sit down in school. I don't think the humira will work but I am hoping and praying it will. If it doesn't work she is out of options medically and is facing surgery, which makes me feel ill. I HATE CROHNS.

Thank god for you all on here cause you all know how we feel

 

[Clash]

Sending hugs and support your way! I hope the Humira and MTX can get your sweet one into remission!

 

[my little penguin]

I know its scary - but we are here for you.
I really hope humira is the trick for you.
I can say be prepared-
the shot is not anything like any other meds DS had had injected before ( he has done weekly allergy injections at age four which did not phase him so not a needle thing)
- it burns very badly - they scream - like a scream you have never heard before - not to scare you but make sure someone is holding her-
ice helps but not a lot .


I really hope she gets some relief.

 

[Mehita]

Maybe I missed it, but what is the surgical option?

Good luck with the meds. I hope they work!

 

[Farmwife]

So sorry to hear this.
Does anything make the pain better down there for her?

 

[Sascot]

Sorry things are any better. I hope the meds do work this time. Sending lots of hugs!

 

[DustyKat]

Oh my, I am so sorry to hear this about your little one. :ghug: I hope more than anything the Humira and Metho give your girl long and lasting relief.

Sending tons of love, luck and healing thoughts your way! :heart:

Dusty. xxx

 

[polly13]

Thanks for the good wishes, mehita the surgical option is to disconnect her colon and hope her bum will heal- we had a surgical consult recently and that was given as the only option we were hoping that there was minor procedure that could be tried. I am also looking into hyperbaric oxegenation therapy but am having difficulty finding a service that will treat a child as young as Lucy in Ireland - GI is looking at this for me also. Interestingly it is quite inexpensive in Ireland so if I could just find somebody willing to do it I think we would try it.

Mlp I have been warned about the humira injection so am really concerned about that - does elma cream help at all. The humira nurse is coming next week and had said she will keep coming until I'm comfortable with giving it- my sis is a paeds nurse so I am hoping she will give it to Lucy for me.

 

[Jenn]

ditto on the ice more than the emla cream. let the dose come to room temp about 20 min while icing. Recommend the syringe vs the epipen, can go a little slower, spreads out the pain a bit. Humira has a home-care nurse plan that will come and talk you through it the first time and nurses on a help line.

 

[my little penguin]

emla cram did nada except stop the needle prick from hurting.

WE do ice till pink but really not sure its helping for him at all.
he screams fro us to take the medicine out the entire time.
IT really burns.
we even let it sit out first.

 

[Jenn]

Sorry MLP, it really burns for Alex too. We do thighs, have you tried the stomach? I hear it can be a little better. I put a blanket over his leg after to warm it up, have him wiggle his toes/feet. Distraction more than real circulation, probably! They are such troopers. Alex takes deep, slow breaths, but gosh, it's hard to keep going as I hear him shudder. We talked about it some outside of shot-time, trying to focus both our minds on the positives. This pain is worth the 2 weeks' health it's giving him, avoiding lots of other pains or complications. I have a hard time giving him the shot and I have to really relax and focus on the positive before I begin, I think he picks up on my stress too!

 

[my little penguin]

WE do movies, ice, doughnuts, warm blanket, etc...
its just one of those things.
IT burns no matter what we do

 

[Tesscorm]

Breaks my heart that all your young kids have to tolerate this pain! And that you have to find the strength to do it! :ghug: I do hope it brings all of them lasting relief!

How long does it burn for? Just while the humira is being injected?

 

[ChampsMom]

I'm so very sad to hear Lucy is not doing well.. My thoughts and prayers are with you...

Crohn's sucks.

 

[Jenn]

It seems to burn worst as it goes in, aches for a few minutes, fine after that. Occasional weird reactions, like a blister when I went too shallow, bleeding when I went too deep, sometimes rashes up but seems to be from the rubbing alcohol. He's been through worse, so this is pretty minor, like Remicade taking 4 hours and not at home, so it's relative, but no, never easy! The near-normal life right now is SO worth it to us.