Worried about what Psoriatic Arthritis could mean

Options
illihor
illihor Member Posts: 283
edited 16. Dec 2010, 03:46 in My child has arthritis
Hi again all long time no see. Sorry about that my blooming pc kept giving me a blue screen of death so apart from facebook popping on quickly (mostly with iPhone) i've been a bit absent.

As most will know Kayleigh has polyarticular JIA she is now 5. This all started at 3 and when we saw consultants last year this is what they said but as both my Dad and brother have psoiratic arthritis they kept asking me about sores, dry skin read blotches etc but she's never had anything so never thought about it much.

Now though, in the past 2 weeks her knees have been getting dry looking. Over the weekend they were really dry and white almost starting to crack look. Now she has red blotches and it's raised she says it itches a lot, so far i've only noticed on her knees but her elbows are starting to get that dried out look :(

We see consultants on 10th January and unless it really bothers her don't want to take her GP as want consultants to see it as not only local hossie will be here but Bristol are coming down so would really like them to see it properly. not sure if this is the right thing to do but our gp's don't really know what to do with her most of the time and just tell me to speak to her consultant and there's no point in calling her up when seeing her in little under a month.

Just wondered if anyone has any experience of psoriatic arthritis in a child and what the outcome for adulthood is like or is this one of the ones that is rarely outgrown as Bristol has never said that she could ever outgrow JIA yet I have heard many parents including all the ones down here who have been told chances of outgrowing etc. I know they have been checking her for psoriasis so I guess back of my mind I knew there was a possibility of this but just went into denial.

Oh another thing I wanted to ask she is on methotrexate and enbrel and she is getting very hairy. her back is covered in hair and the top half is getting very thick. Also down below she is getting hair (would go so far as saying pubic) as looks like what's on her back but has anyones elses child gotten extra hair while on this treatment? I haven't really mentioned it to her or pointed out that it's not what she would normally look like I'm trying to convince her at the moment to show people her knees and back etc ready for consultants visit as she always clams up and tries to hide never wants to show things to them.

Just when I thought I was getting a hang of things something else crops up. :( never easy raising children and right now she's not had last weeks MTXof enbrel due to having flu (yep she's had the jab and only got it mildly but a Fever of 38 now since Thursday so nurse said no injections while ill. So hoping she's better by Friday so she can have this weeks as I'm already starting to notice things and yesterday her knee was hurting to much to climb the stairs.

Michelle xxx

Comments

  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Options
    Hi sound's really painful and especially when arthiritis is painful. I think you are doing the right thing, i was once told by my gp there was nothing he could do when phoebe was in a lot of pain. Just phone your specialist or speak to rheumy nurse. I hope you both get through this and that everything goes alright. let me know how you get on.

    Take care Michelle x
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Options
    Hi Michelle

    Sounds like poor little Kayleigh and you are having yet another tough time. I am really sorry. I dont know anything about Psoriatic Arthritis at all but wanted to say that yes Annie has got quite hairy. Like Kayleigh it is on her back but also her eyebrows are alot thicker and her arms and legs.
    At 6, she isnt really bothered but her big sisters tell her she must get me to pluck her mono brow!
    She has been on steroids since February, mtx since july and now embrel for 4 weeks. Apparently the Consultant told us it will go once we can get her off the steroids but after her steroid drip last week we just seem to be adding to them. Her little cheeks are now beginning to pudge out alot to.
    Annie also hasn't grown very much this year and I have noticed lots of her friends beginning to shoot up and she is being left behind - once again this is the steroids.
    I find what the medication is doing to her very upsetting but I also know she cannot do without it. It's very sad.
    Take lots of care of yourself Michelle - it's a busy time of year and really hard going on you.
    Thinking about you both,
    Lucy
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Hi illihor, another mountain to climb, yes? I think you should ask your GP to refer Kayleigh to dermatology, they are the best sources of info regarding possible psoriasis and its treatments. It is an auto-immune condition, caused by the skin renewing itself too quickly. I am on sulphasalazine and that controls the P side of my PA, but I also should say I have only had two episodes of P in my entire life: I had chronic eczema and asthma as a child so for all of this to follow is just logical, really.

    Regarding the hair growth, I too had this when I was on cyclosporin, another immuno-suppressant drug. It wasn't pleasant but it was a side effect. I would Veet the backs of my hands and my chest, I don't think I was supposed to but ****** that. Some things are one pressure too far - I guess she may be too young to realise what's happening but, should any nasty comments be made (and there is nothing nastier than small children sometimes - little angels they are not) then perhaps some form of depilation could be discussed with your GP. Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
Back to top

Categories