Reactive arthritis

[theworldhasgoneinsane]

Looking for some experiences please from people who have been through this or know about what could help.

My 9 year old daughter has a working diagnosis of reactive arthritis. The pain and swelling has been going on for just over 2 weeks, and when one part of her body recovers, another seems to flare up. Currently she has very painful and swollen hands and feet, she can't even get shoes on and holding a pen is difficult.

Hospital have prescribed ibruprofen 300mg 4 times daily and paracetamol for pain management. She has had a course of antibiotics, no fever, although her inflammation markers are high from bloods . She has a review on Wednesday to see if there is any improvement.

Does anyone know of anything else which will help? The pain relief she has takes the edge off after a while, when she gets up in the morning she is very stiff and in a lot of pain. Any experiences welcome please

My husband had this a few years ago in his ankle and back. It was awful so I feel very sorry for your daughter. Who is she seeing? She needs to be referred to a rheumatologist. My husband had steroid injections and was prescribed something called Sulfrasalazine which is an immunosuppressant I think but in the end his arthritis started to improve before he needed to take it. I think really, the only thing that helped is time. It took a good few weeks for the pain to get better. But it will go away even when it doesn't feel like it.

Thank you for your reply @idril
I'm glad to hear it passed. My little girl is used to being very physically active, 6 hours of gymnastics a week plus other things and this is really difficult for her, she's gone from that to being quite disabled by this.

I have heard about steroids but worried about any potential side effects. I have also heard of naproxen being used. She is under the general children's ward at the hospital and they have mentioned referring to rheumatology if it doesn't improve, but don't know when that might be

Oh bless her it's not something a child should be dealing with. I was first diagnosed with this at 15 and I really struggled I used to think it was something older people only got !!!
At the time, With being older I was on steroids. However once my joints where drained (awful) swelling was under control I finished the steroids eventually. I still have swelling in some joints now if I've had a infection or been poorly. I still suffer aching and pain in the affected joints. I find one of those bean bags you can microwave really help, warm baths, not sitting same position to king and generally getting enough sleep help. I also take extra vitamins.

I would push for referral asap. Naproxen is a painkiller - my husband took that too. Easier for him as he's an adult. Much more difficult to weigh up the risks and benefits when it's your child.

I don't think the steroids made much of a difference anyway. The only lasting effect that my husband has is a slightly weak ankle joint. He used to run but was too scared to for a few years after the reactive arthritis but he started again about a year ago and makes sure he does ankle strengthening exercises and touch wood he's been fine.

Thanks @idril I will speak to the hospital about a referral. I flit between having trust in them to do what's right and not feeling they are doing enough! We've been back and forth over the past couple of weeks with her in so much pain but they haven't given her any extra pain relief, just more and more bloods. She is getting very fed up with going up there. I don't want her dosed up on more than what is necessary but want her to be comfortable and be able to go to school.

Thank you @bagheera92 I will try using heat for the pain, good to hear what's helped for you

Hi wondered how your daughter got on in the end think my daughter has this at the moment.

Just a thought.. there is a lot of slapped cheek virus around at the moment. This can cause stiff painful joints (hands or feet, knees etc). They say joints are mostly affected in adults who catch it, but my daughter (aged 8) had it. It can last for a little while. May be worth looking into.