My daughter is 9 years old and was diagnosed with psoriatic arthritis this summer. While I feel fortunate to have had an early diagnosis based on her first symptoms, my husband and I we have a lot to learn about how to best navigate this new world and prepare her for her best life.
My daughter is currently taking methotrexate by injection as we try (for the third time) to wean her off of prednisone without another round of uveitis. We're trying to remain hopeful that her recently increased dosage of methotrexate will do the trick, but I'm not feeling so optimistic. We're also trying some dietary changes to see if that may help ease her symptoms a bit.
Happy find this community to learn more about living with psa and to have some support as our family finds the way through this new territory.
Hi, and welcome to the group!
I was dx with PsA at age 10 (I'm 41 now), and one of my first, and most worrying symptoms, was uveitis and iritis. I too was on systemic prednisone, and when I went off of it my skin, joints, and eyes flared badly. However, it's important to get off it... the prednisone stunted my growth (according to the docs, I should be a few inches taller), I'm at higher risk of osteoporosis, and I have permanent fat deposits from being on the meds (upper inner thighs, 'buffalo hump' fat pad), and small cataract in my eye.
Your child should probably be trying one of the biologics, like Enbrel. It works on the inflammation itself, and can benefit joints, skin, and eyes.
Hi Marietta, thanks for the reply. Yes, we’re eager to get her off prednisone as soon as we can. May I ask how long you were on it?
My daughter’s rheumy has told us that the next step will be remicade, but we’re giving the higher dose of methotrexate a try first. It has been 3 weeks since the increase so we should know something soon.
For reasons, that I don't think anyone knows kids do really well with Remicade. I've always suspected because their immune systems are still developing. I know how overwhelmed everyone must feel and you must be doctored out but I would suggest a baseline check with a GI doc sooner than later.
I know you aren't asking for parenting advice, but My wife and I have been there. I'd start now to limit her "screen time" whether its android, pad or lap top or even TV. It'll make it much easier to make her time in the infusion center more special and for now keeping her more actvive. It'll break your heart to push her into activity when all you want to do is wrap up and rock with her because you know she hurts. She will be stronger than you........ But you are right to be preparing her. Teaching her now that an active life no matter what is a better life will be the best thing you can do.
God bless you. I'm so glad you found us. We are here to help........
I was on prednisone for a bit over a year, starting around age 8 (to try and get my eye issues under control).
I'm surprised the rheumy is suggesting Remicade. Enbrel has been tested on children, has the longest safety data (it was, I believe, the first biologic), and is better tolerated.
If you have any more questions about childhood PsA, I'd be glad to pass on my knowledge and experience. Feel free to email me.
Enbrel had about half the efficacy of Remicade as I recall. uveitis is an issue with enbrel
Thanks for the advice, tntlamb. I had not thought of a GI doc. Makes sense. Thanks for the advice about keeping active too and saving screen time for the infusion center. We’re feeling very lucky that our daughter doesn’t have any joint issues yet, and it is so important that we take advantage of this time to form healthy habits that will keep her active. Her little brother keeps her running, and we’re looking at this as an opportunity for the whole family to embrace a healthier, more active lifestyle.
Marietta, both our rheumy and our eye doctor have said that Enbrel is not effective for uveitis so it’s not an option for my daughter at this time. I will definitely take you up on your invitation to learn more about your experience. Thanks!
Ah, my info is out of date :) Sorry about that. I was just thinking back when Enbrel came out, and they started testing on kids, and how excited everyone was.
Enbrel stopped my uveitis cold. I know that it is not indicated with uveitis, but it was amazing for me.
Marietta, both our rheumy and our eye doctor have said that Enbrel is not effective for uveitis so it's not an option for my daughter at this time. I will definitely take you up on your invitation to learn more about your experience. Thanks!
wow--what a tough diagnosis and so young. I'm so glad you're here to soak up all the advice you can for your kiddo. I hope it's clear that you've found a source of excellent information and personal knowledge here. This is a really good place to come when you and your daughter are having tough times, too. Good luck to you both and keep checking in with us.
Mom, welcome! Being a parent is so chock full of issues already, I cannot imagine how terrifying it is to have a child diagnosed with PsA. I'm also a mom, and I worry that my kids (now teenagers) will develop PsA. My youngest is starting to get what I will call Psoriasis-like lesions on his scalp...not quite the same as what I have, but more prolific and scalier than other scalp conditions. I am watching him closely so that the minute he shows any symptoms of PsA I will be on top of it. Good luck, my new friend. This is a great group of folks that have lots and lots of information and personal history.
Welcome to the group, glad you're here !
That's a really tough situation and I'm sure you will benefit from the group. It's a great place for patients and family dealing with PsA. That's a lot for a Mom to deal with. I hope the search for meds that work is short. Especially your daughter being so young.
Hi I’m sure you will get lots of advice, basically your daughter will give you the best feedback. I love my remicade, I get to about 99% of normal. I will never run marathons but it doesn’t mean she won’t. The biggest problem I face with no relief is the fatigue. You can’t explain it it makes no sense and there doesn’t seem to be enough rest in the world to combat it. Find a way to ease pain besides drugs some like cold some like heat it will depend on your baby. Heat is my best friend. Steroids are useful for flare ups but not long term different people affected different ways mine is bloating ( moonface is not pretty) you will get through this just fine Mom and your little girl will have the best support in the world. You.
I just happened to notice this thread, but see it's from 2013 and "mom" hasn't been on for awhile. I wanted say I hope everything is going well for her now 11-year old suffering with PsA already for a couple of years. It's always heart wrenching to hear about kids having to suffer from anything--and especially something that will be lifelong! How unfair! It seems kids handle things like this much differently than most adults do--I doubt the child is concerned about the long road of pain and meds ahead of her. Hopefully, it's not as stressful for the child as it is for her parents and the rest of us adults (sorry mom) because it doesn't seem right for a child to have such huge concerns. Yeah, it's a chance for character-building, but still!
Obviously, because I'm a worrier, concern about one or more of our kids/grandkids ending up with psoriasis and PsA is ever in the back of my mind. I wonder how people approach this when it hits their own child? Since we know firsthand what it feels like, are we more apt to coddle them? I think I would be!!! I always tend to think I can handle things better than my children/gr-children, and I'd way rather just take on all the pain myself if I could to protect them from it.
Well, I'm resigned to the fact that some of our offspring will someday end up with P or PsA-with it on both sides of the family. I'm hoping for better meds on the horizon that actually cure or prevent the autoimmune diseases rather than just treat them-hopefully someday soon PsA will be another one of the diseases that's GONE FOR GOOD!