Juvenile Idiopathic Arthritis

[SnowyMama]

Hello,

My 5 year old soon is about 4.5 weeks into symptoms of JIA, very stiff and painful joints in the morning which does seem to ease off to varying degrees throughout the day.

We have had blood tests done where his inflammatory markers are high, his rheumatoid results were negative but he is ANA positive.

We are waiting on a referral to the rheumatology department at the local children’s hospital however to say I am going out of my mind with worry is an understatement. I cannot stop worrying about the thought of how long term this could be, of how it is going to stop him living like a normal little boy, of the effects of the medication, of the increased cancer risk, the increased risk of the eye infection which can cause blindness, I am honestly in a black hole of complete and utter anxiety.

Please can anyone with a relatively positive JIA story share it as I really need some hope to focus on as I am going under watching my little boy suffer and thinking of what could happen.

I can. I’ve had JIA 30+ years since I was about your son’s age. My DM went through the same worries I’m sure, but the impact on me though real has been manageable. I still have symptoms and some joint damage but my eyes are fine, I’ve never had any kind of cancer scare, the medication is ok. Don’t get drawn into the scare stories because they aren’t as common as you might fear. I’m a middle child and my childhood really wasn’t much different from my siblings’. I can’t deny that it can be painful but it’s ok, it becomes normal IYSWIM. He’ll be ok.

Thank you for your reply @ResidentPorker. Please can I ask which type of JIA you have? Did you/do you use methotrexate?

I’ve used it, but I found it meant I got every bug going and the effect on my immune system for me wasn’t worth it. But that was fine, my rheumatologist just put me on another medication that doesn’t have the same side effects. There can be a bit of experimenting before you find what works.

Hello, JIA here, celebrating 40 years of it this year, diagnosis at 4. Stills Disease, which is now called systemic arthritis and is now rheumatoid and psoriatic arthritis.

It's a scary and stressful process you are going through, and the Internet doesn't help, so I thought some info or tips from someone with actual experience will be of some use.

. The medication they have now is life changing and has reduced deformities to almost zero. There are so many to choose from, and some will suit, some wont, but you will find a sweet spot.
.Uveitis is extremely rare, but book an eye test once a year for peace of mind.
. They usually start with steroids to attack a current flare, and methrotrexate is the standard. However, if it has too many side effects, there are lots more.
. There was nothing I couldn't do that the other kids could, but there would be pain if I was in an active flare. It hasn't restricted education, social life relationships, or rearing children, and I've adapted where I need to.
. Get him in the water, if he doesn't know how to swim. Teach him now, it's amazing on the joints, gets the exercise in, and is a great alternative to physical sports like football.

. He will be entitled to assistance in school if needed. You can push for better seating, stretch breaks, to do exams via computer if it's in his hands.
. There are parents out there just like you. Search online though fb wherever and seek them out, they will be the only ones who know what you are going through and also provide support for siblings.
. Liok after yourself as best you can, its a lot right now but you will be thrir advocate in the years ahead, taking to appts; administering medicine, soothing sore joints, it's important to take some time for yourself and if you have a partner at home share the load.

Best of luck with everything!

Hello, my daughter is 10 now and was diagnosed with JIA at 15 months.

She is under Southampton hospital who have been amazing. My daughter was on Methotrexate and steroids to begin with but changed to adalimubab. She has been on this for years with no problems.

She had eye involvement and aggressive joint involvement at the beginning. Over the years the hospital have tried to take her off the medication twice to see how she does, she has flared up each time.

Day to day though she has no symptoms, the medication works for her and she is as active as she wants to be ( lazy!!) she swims, runs around and joins in the same as any child.

We were petrified to begin with but have kind of got used to it over the years. I would say it was most challenging when she started nursery and school and picked up every big going. There were many hospital visits with infections of one sort or another.

I have Rheumatoid Arthritis myself and would say that dodgy immune systems run in my family!

Any questions, don't hesitate to ask.

Thank you @Bellabluetwo .

Please can I ask you a couple of questions?

What type of JIA does your daughter have?
Why did she come off methotrexate? Did she have any horrible side effects? Did JIA affect her appetite? How did your daughter take the medication when she was a small child?

We have our first Rheumatology appointment in the morning and it cannot come quick enough as the last few mornings my son has just been screaming in pain and I just can’t handle it anymore, but I want to go to the appointment with as much understanding of the possible treatment options as I can as I don’t want to blindly agree to something.

Do you think she caught lots of bugs because of the medication she was on? Or because of the JIA? Up until 6/7 weeks ago my son was just a ‘normal’ 5 year old, I actually used to think he had a really good immune system as he always seemed to fight things off well and nothing like this runs in our family.

Thank you @SnipSnipMrBurgess .

Please can I ask if you feel like you have childhood trauma from having JIA from
such a young age? The mornings we have with my 5 year old currently are absolutely horrendous and I don’t know how he’s not going to be permanently scarred by them.

Hi again, I remember those mornings, they were awful. At one point I had to video my daughter waking up and trying to walk whilst stiff and in so much pain. We felt awful doing it but needed to show the doctors how bad it was first thing.

Before medication her immune system was fine, the medications work by lowering her over active immune system. When they are that young there are loads of school type bugs to pick up. They immunise again chicken pox for this reason. Steroids can mask infection and the methotrexate and other DMARDS lower the immune system.

She was one methotrexate for a while, we were injecting her ourselves at home. She started to get strange stomach cramps like stomach migraines. Then she developed uveitis, which is inflammation in the eye cells. She changed medications for both of these reasons.

@SnowyMama how did the appointment go? Hope they had some answers and next steps for you? X

Hi @Bellabluetwo

They diagnosed him with JIA, he has it in more joints than I realised and he is going into hospital tomorrow as an inpatient for 3 days to have an IV line of steroids and start on methotrexate which I am terrified of as I wanted him to have the chicken pox vaccine before we start but they’ve strongly advised against waiting. So yes we have some answers and next steps… I don’t feel particularly better, just a different type of worried now x

I'm glad they are acting so quickly, you should start to see a difference on the teroids really soon.

My daughter had oral steroids and steroids injections to specific joints, they act quickly.

They give anti-viral medicine if you think they have come into contact with chickenpox. X

@SnowyMamaabit late to this thread, my daughter is 5 and was diagnosed at 2.5 years. If you have any questions I’d be happy to help, hope your little one is doing okay xx

@Mamaxo thank you for replying to this thread.

My son has been doing really well overall, he had the steroid IV at the end of August which made an enormous difference and then was on oral steroids which only finished a few days ago and we are on week 6 of methotrexate. However the last few days he’s started being in pain in the mornings again and limping a bit and I think it’s because the steroids have weaned down/stopped so I feel quite deflated at the moment. Giving him the methotrexate injections is horrific but I didn’t mind when I felt like he was so much better but now it just feels a lot more negative.

How is your little one doing? Did you experience anything similar? We are still so early on in the journey I find it overwhelming worrying about what might happen going forward x

I was diagnosed at 18 months old. I'm now 43. I had pretty severe symptoms until I was five when I went into remission until I was 11 and flared badly. I had a mixture of treatments before 5:
aspirin
fluid removal and steroid injections
steroid tablets
Hydrotherapy and Physio
Splint wear at night to straighten my legs

Between five and eleven I had a pretty normal childhood, with some restriction - no jumping off of things, no sports which could 'jar' my knees.

Between 11-16 I was pretty bad. Fluid removal and steroid injection every few weeks and I was also on Brufen and ibuprofen. Restrictions on sports at school and unable to walk far. Had regular eye checks (about twice a year) at the hospital - all fine.

Was in remission from 16-21. Flared but not as bad as teen years. Was on Naproxen and Sulfasazine. Kept me ticking over and I got my self off all medication by the time I was 30.

Flared again after giving birth to my child when I was 34. Probably my worst flare yet - walking with sticks, difficult to carry my baby around. Had steroid injections and back on Sulfasalazine. I am still on Sulfasalazine now and it keeps me ticking over.

i was told at age 15 that I would probably be In a wheelchair by age 40 - I'm not!

it's unpredictable but you can do things to help, such as gentle exercise (swimming is perfect), supplements (cod liver oil etc), knowing your limits etc

My husband also has a chronic illness, diagnosed later in life and he struggles more than me because he remembers 'normality', whereas I don't. I have always treated my JIA like a friend - I am respectful to it, and it respects me. I know not to walk too far, or do things that are hard on my joints. The fatigue is the worst thing - I work full time (I was once told I'd never be able to do that) but that means I have to go to bed early and get rest when needed. I have to say no to things like social events if I know I have a busy time at work.

It's not ideal but it can be managed and I think that in the next few years advancements in medicine will see much better treatments for JIA.

Please try not to worry - I know easier said than done but it won't change anything. Invest time in looking at things to help (like the swimming etc).

@SnowyMamabless his heart 💙 my daughter ended up having steroid injections aswell as the tablets which help massively because she’s autistic she had to go under which wasn’t nice but she did make a improvement pretty much straight away, she was on methotrexate but had to stop taking them as they was effecting her liver they kept her off all medication and she was in remission for 6 months before a massive flare up in December effecting both ankles, left knee, both hands and both wrists, they started her on adalimumab which I think is a lot better, injections every 3 weeks instead of weekly and blood tests are a lot less to which is a bonus. She’s doing pretty well and it’s second nature to her now, us to. At the start of her journey it felt like the world was ending and one of her doctors said to us in 6 months this will be your new normal and everything will settle and you’ll be ok and I remember thinking “f@ck of” 😂 but he was so right, your at the hardest part of the journey now but it really does calm down, your sons pain and swelling will calm down, you’ll get used to the injections, hospital appointments will be every few months and it will just be your new normal (still sucks I know) one thing we do for my daughter is everytime she has her injection and gets a present from a gift bag (it can be a £1 mystery toy lol) but she loves this and it turns a negative into a positive. Sorry for such a long reply lol❤️

Do you mean she got uveitis because of methotrexate. Was she tested for uveitis before starting methotrexate