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Autoimmune disease
Juvenile arthritis anyone??
Flossie44 · 17/01/2020 23:23
Has anyone any experience of this??
Horses4 · 18/01/2020 09:47
Yes, my 9 year old was diagnosed three years ago, along with wider connective tissue disease. What would you like to know?
Flossie44 · 18/01/2020 20:39
So my daughter (aged 13) has had symptoms. I took Her to the gp who referred her to a consultant rheumatologist. He examined her and looked at pictures we had taken of dd’s swollen red joints. At that appointment did was on prednisalone for her asthma, so her joints were better.
He said he was v suspicious.
We’ve since had a letter to say he is highly suspicious that she has polyarticular juvenile idiopathic arthritis.
She’s now been referred to OT and physio and also to a tertiary hospital.
I am just confused. But surprised too to be honest.
My other daughter is seriously poorly, and now this daughter has this looming. I just don’t know what to expect if I’m honest
Palavah · 18/01/2020 20:55
sorry to hear that. Tough for all of you.
It's not a well-known disease but there will be lots of people out there who've gone through similar - patients and parents of patients.
Fingers crossed she gets seen at the referral quickly and they can find a treatment that helps.
Flossie44 · 18/01/2020 20:57
It’s completely new to me!!
Dd2 has auto immune issues that are life threatening. However dd1 has this diagnosis. I’ve never even considered it or know anything about it!!
Horses4 · 18/01/2020 21:58
It is a shock at first, but there is good support out there, and it’s usually a very manageable condition.
Prednisolone is the first-line treatment, followed by methotrexate and then biologics if methotrexate alone doesn’t work.
My understanding is that polyarticular is one of the subtypes that is less likely to carry into adulthood? Though my recollection might be wrong. My daughter doesn’t yet have a firm diagnosis so it’s a bit different for us. I suspect it will transpire that she has lupus but time will tell.
Versus Arthritis have good support networks and events, depending on where you are based. If you need to talk to someone who has been through it, feel free to PM me, I really do understand that feeling of complete bewilderment.
So sorry you and your daughter are going through this.
Flossie44 · 18/01/2020 22:45
So what makes a firm diagnosis?? DD’s bloods are ok. Just waiting for auto immune ones to come back. But he said the photos were evidence enough as the swelling was extreme.
That to me is confusing. Surely a diagnosis can’t be without blood confirmation????
Horses4 · 18/01/2020 23:39
My daughter’s bloods have largely been fine, although she is ANA positive. You get RF-positive and RF-negative in rheumatoid conditions. Indeed, imaging is more helpful than bloods to diagnose arthritis. ESR/CRP are general measures of inflammation that can be raised in many conditions. Polyarticular relates to the number of joints affected at diagnosis. This is useful www.arthritis.org/diseases/juvenile-idiopathic-arthritis.
Flossie44 · 29/01/2020 09:46
That’s interesting your daughters bloods have largely been fine. So was the diagnosis on visible joint issues alone??
Has she had any issues with her eyes.
We’ve suddenly been sent appointments for OT, physio, and ophthalmology.....!!
Horses4 · 29/01/2020 10:24
She was ANA positive, RF negative, and fairly inconclusive inflammation markers all along. The most notable thing was hypothyroidism and v.high anti-thyroid antibodies at the very beginning, but that's now resolved, oddly.
She doesn't have a firm diagnosis beyond "connective tissue disease", they're very clear it's not JIA as it would normally present as she has other issues like Raynaud's and other vascular symptoms, abdominal involvement, regular costochondritis and other issues.
Yes, she has uveitis - that was what triggered her treatment initially. It's been in remission for about 18 months or so, but she's seeing her ophthalmologist tomorrow just for a check-up. Steroids and methotrexate alone didn't do much for her condition, but they added in adalimumab in January 2018, and that helped her eyes a lot.
You get used to the barrage of healthcare professionals. At one point my daughter had a rheumatologist, ophthalmologist, physio, psychologist, endocrinologist, gastroenterologist and neurologist. It becomes time-consuming to say the least - especially at the start when they want to see you regularly. Once things are under control it does get easier. Hydrotherapy is very helpful if they will refer her for that, or if you can get it privately.
CatOnABeanbag · 30/01/2020 21:31
Hi flossie, my dd has polyarticular jia. There are some really great support groups for families out there. Juvenile Arthritis families UK (or something like that anyway) is an active Facebook group. There are local ones too. JIA at NRAS and CCAA are worth looking up too- they are long-established charities that put on quite a few events for kids with JIA and their families.
to you. I was so shocked when she was first diagnosed.
Flossie44 · 31/01/2020 07:38
Thank you.
I still am not sure to believe it or not. I haven’t had it confirmed as ‘yes it is JIA’. Just that he’s ‘highly suspicious that it is JIA’. Which is why I’m shocked as to all the additional appointments coming through. Surely he must be more than suspicious to be referring her on. Also he’s referred her on to a tertiary children’s hospital which is 3 hours drive to get to. Not that I’m quibbling the drive, more that..this must be more than suspicion for this to be actions surely?
CatOnABeanbag · 31/01/2020 08:27
My dd was diagnosed following an MRI scan on her ankles and knees. This came after being fobbed off for a long time by the gp so I'd say it's good that your gp seems to be on it and aware of jia. Sorry, I hadn't spotted in your post that your dd hasn't had a diagnosis yet.
The opthalmologist is to rule out uveitis and if jia is confirmed she'll have regular appointments with them.
Good luck.
Flossie44 · 31/01/2020 09:04
Her gp referred us to a Paediatric rheumatologist at our local hospital. He’s been the one who’s actioned all the further referrals and says he’s highly suspicious. But I guess I would just like a yes it is, or no it isn’t. All seems fluffy at this stage but just wondering if that’s normal.
The consultant has made his assessment on just seeing her joints swollen and inflamed at this stage. I just wonder if that’s enough
CatOnABeanbag · 31/01/2020 12:59
Ah ok. I was under the impression that bloods aren't all that useful in diagnosing jia, but I'm not a doctor so don't take my word for it. I guess the swollen joints plus the fact that they responded to prednisolone is a fairly clear sign. When are you likely to hear more?
We are relatively new to all this but the Facebook group that I mentioned above has some really knowledgeable people on it.
Flossie44 · 31/01/2020 13:42
Cat - thanks so much. I’m not on Facebook. However you’ve helped clear some of my confusion. So thank you x
MrsB2019x · 09/02/2020 22:49
Hi @Flossie44, I was diagnosed with rheumatoid arthritis at 17, so not juvenile, but not far off the age of your DD. I remember having lots of prods and pokes, xrays and bloods done. When they did do my bloods they did notice my inflammatory markers were high. I think the diagnosis came as a result of all 3 things together.
If they decide medication for her, I have been on sulfasalazine for years and found it to be the most helpful thing by far. You can also be pregnant and breastfeed while taking it (although hopefully the JIA will have gone by then). Methotrexate made me feel hideous.
Big hugs to you and your DD. I’m happy to answer any questions either of you may have 
Elletine · 22/03/2020 17:21
Hi @Flossie44 I have polyarticular juvenile idiopathic arthritis - I was diagnosed at about 2 and I'm 30 now! DM me if I can be of any help to you and your daughter. All the best
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