couple more mtx questions for my 2 year old

From some of your responses to my earlier post about Nathan and his JRA, I was wondering - how long have you been on mtx?  How long have you been on it?  Is it safe to assume that he will be on this drug for the rest of his life and then we will add other drugs if necessary?  I have to say, he has been doing wonderfully on it - last Sunday (after his Sat night dose) he was perfect all day - running around outside/eating/drinking/etc.  We havent seen any change in his fingers/wrists/toe but I imagine that will take some time.  Again, thanks for all your earlier responses - it is a great comfort to know you are here and that you have been through this - and then some.

Heather

Hi Heather! I'm so glad to hear he's perking up.

I've been on mtx in various forms (IV first, then pills, now sub-q injection) since before my son was born, so it's about 18 years. My rheumie tried to get me on it sooner but I was afraid of losing my hair so I refused for a long time. Finally I started it and it has been a good med for me. (Didn't lose my hair!)  It's been used for many many many years and it's well-documented - I trust it more than I trust prednisone.

As he grows and his metabolism changes, expect some adjustments to the dosage, maybe adding other meds to the cocktail periodically. It's difficult to say how long he'll be on it. It might be his baseline, mainstay med for many years to come; or its efficacy may wear off at some point and he'll have to switch to something else. Hopefully that won't happen for a very long time, if ever. Sometimes meds have to be rotated to keep the immune system "guessing". It's hard to say with kids - things change rapidly as they grow. Puberty will probably be a big contest between his changing hormones and his med cocktail, but that's a few years away!

Research advances all the time, and with the recent lift of the the ban on stem cell research, I have high hopes for your little guy that he'll reap the benefits 10 or 15 years down the road! I pray for that day we can all throw away our pill bottles, and a diagnosis of RA will be a temporary inconvenience.

Sorry, this isn't very helpful, is it?   I guess the best answer is hope for the best, and anything can happen - that includes good things!

Heather,

You and your son have been on my mind since I read your first post a few days ago.  I don't have too much to add concerning the medical stuff, b/c the Creakies have been right on the money with their advice, but I just wanted to reach out to you and let you know that I'm pulling for you guys.  You are doing a great job!

I too have a toddler son - - he just turned three.  Our situations are reversed, however, as I am the one with RA.  But if you ever want to commiserate, just know I'm here for you.

- Kati

P.S. Activity helps with the stiffnes, pain and swelling!  If he is resting too long, that could cuase a mini-flare, so don't be afraid for him to be active.  Of course, you don't want him to overdo it, but that's a challenge to keep any toddler for wearing themselves out.