"Any fool can make things bigger, more complex, and more violent. It takes a touch of genius - and a lot of courage - to move in the opposite direction." - Albert Einstein
Sigh. This really, really, really touched me today. I am really struggling right now, not because my daughter isn't doing well, but because she is....if that makes sense. All this time, no pain, happy, full of energy. But she has swelling and arthritis. I try to find families like us, but can't. Even on meds, I see posts about missing school, treating pain, etc. Remission, yes sometimes - but usually followed by 'then we stopped the med and he/she flared and is back on it....' It's a lifetime, it's a lifetime, no matter what.
Sigh. What makes me feel the most troubled, the most sad, what makes this quote literally bring tears to my eyes - I've seen several recent posts about very young children, 3 and under, BABIES, on mtx and Remicade. Remicade. When I started going to the boards, Remicade was the end of the line for adults. The tippy top of the ladder. There was not enough time in a toddler's life to fail up to Remicade.
So now they are going straight to it???? What does that mean? What does that say? The rest don't work anyway, let's just give it our......most violent?????
The parents posting are happy that their child has a good quality life now. I would be, too!!! Bless them all, thank goodness it works. But for us, being advised to start Enbrel - how do I process this new trend? We don't need Enbrel to get my daughter to school, to dance, to playtime. If children who need that are skipping ahead to Remicade, why should we bother doing Enbrel now?
And we aren't doing Enbrel now, but how is there room to even make a case that it should be considered?
Suzanne, it is hard for adults to consider some of these meds for RA, I can't even imagine taking on the thought that my precious child would have to endure some of these side effects.
For me Remicade was not at the top of the list(the last straw), because I have PA with psoriasis. Humira and Remicade cover the psoriasis better than Embrel, so it makes Embrel the least attractive for doctors. Humira and Remicade have failed, so I am hoping the Embrel works and it will work to contain the psoriasis and Crohn's too. Remicade worked to contain both the psoriasis and Crohns...very well actuall...it just did not work for the joint pain.
I hate all of these decisions, and especially hate them for the youngest of us all. Sorry...extra hugs for you today!!!
Thanks so much, Shelly.
It sounds crazy, but it would be so much easier to add a med if she had pain. But of course I don't want that! I just know that some parents do make these hard decisions very quickly, because their child is suffering and has no quality of life. Side effects would not matter to me, if she couldn't function. We would want her to live her life.
Enbrel isn't so good for psoriasis, you say? Hmmm, you wouldn't know that from their TV and print ads LOL. I hope it will help your joint pain. Can you stay on Remicade for the symptoms it was controlling?
Oh Suzanne, I wish I could wave a magic wand and make all of us well, especially your precious daughter. It has to be hard not to project your adult longings that she have a "normal" childhood on to her, as you know that she is not going to have a "normal" life as healthy people view it. But, I suspect that with such a great, loving, caring, trying, prodding, persistent Mother, she thinks she has the best life in the world. You are very rare and I greatly admire you. CathyThe biologics really reduce joint damage, that's why they are using them with kids. I hope she feels better soon :)