treatment help

Hey guys,

My names Kristy, I'm 21year old and i was diagnosed with JIA at age 6 in my knees and hips, been in and out of remission since then. Usually my episodes only last 6 months or so, and I have no pain at all just noticeable swelling.. but this time has been very different, it's now affecting my right elbow. I'm unable to straighten my arm nor touch my shoulder, I can't hold an thing heavier 1kg in my right hand - I can't even shake my deodorant can!

I've been seeing my doctor and rheumatologist for the past 8 months, they attempted to treat me using

- meloxicam 15mg, but this unsuccessful

- Naproxen 1000mg, some pain relief but unsuccessful anti-inflammatory

- Sulfasalazine 500mg, worked every other time but not this time

- prednisolone 25mg, things started feeling better for about 2 weeks then it just stopped working

- cortisone guided injection on March 10th 2017 , after 1 week I had more mobility and the pain decreased significantly by week 4 pain came back and mobility was wore.

It has also been brought to my attention that I now have pain in my jaw, not sure if that's linked but I thought I'd mention it anyway.

I have another appointment with my rheumatologist comming up.

I was wondering if anyone had any other suggestions on treatment?

Also what do you recommend I use for pain relief? I'm finding it quite difficult to reduced the pain, I'm barley sleeping because of it.

Thankyou to everyone how took the time to give this a read, I wish you all the very best!

17 Replies

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  • I take sulpha and last year hydoxychlorquine was added and this has eased a lot of my problems,xxxxx

  • Thankyou for your reply! I will definitely mention there's treatment options to my rheumatogist

  • Are you on methotrexate or any other dmards? X

  • You could ask your GP for some morphine patches. Your rheumatologist should be considering biologics if you are not already on them. X

  • I haven't actually tried methotrexate just yet but it seems to be quite popular. I'm doing reasearch on it now! Thankyou for spending your time replying to me

  • They should start you on some sort of dmard first before trying biologic treatment. I was 14 when I was diagnosed so I have JIA as well. I currently take methotrexate and toxicilizumab but I used to be on leflunomide as well. Avoid prednisilone if you can.

  • Hiya Kristy & welcome to us here at the NRAS forum. Firstly, I'm sorry to hear things are rotten for you just now especially at your young age when you should be carefree though having been diagnosed with JIA from such a young age you will be used to it but still us oldies do feel for you.

    It does seem as though your Rheumy does need to start stepping up your treatment plan & may well discuss this with you at your upcoming appointment once he's aware of what you've explained here. It may help you to read up which treatments may be considered so the following links explain common RD meds.

    nras.org.uk/getting-establi... & nhs.uk/conditions/anti-infl...

    I was diagnosed in 2008 & currently I'm treated with 2 DMARDs (methotrexate & leflunomide) plus NSAID (etoricoxib) & low dose steroid (deflazacort). I've tried 2 other DMARDs previously but been on MTX 8 years. I've had 5 other NSAIDs before etoricoxib, so it can be a case of suck it & see I'm afraid before you find one that works for your specific needs, the same with DMARDs too.

    Do keep in touch, let us know how your appointment went, we'd be interested to hear how things go for you. 😊

  • Hello, yes being diagnosed at young age sucks but I always see the brighter side to it. Often patients with JIA lose their eyesight fortunately for me that didn't happen.

    I pray everyday for a cure, especially for those children.

    I have been doing some reasearch on diffrent meds thanks to you and the lovely people who replied to my pledge for help. I've found that methotrexate seems to be puplaur but I do need to do some more reasearch and collaborate with my rheumatogist.

    This is the longest amount of time (9months) I've been on any form medication.

    I will defiantly keep it touch, I've learnt so much from everyone here! Wish this was around when my mother spend every evening of my childhood reading medical journals about RA to find the best way to help me!

    Thankyou

  • Despite your already long history of pain and treatment, you sound like a very positive person. Perhaps you could try asking for a second opinion if your forthcoming appt doesn't fill you with confidence. Do hope the docs will find a more successful treatment regime for you, and that science moves on so that better ways of treating are found before you get as old as me!

  • Thankyou for your kind and thoughtful reply! I defantly will look into seening another rheumatogist fingers crossed they find a treatment!

  • Kindly consider what Jenn, Cole, & Joseph have to share, kkristynikoo: Juvenile Idiopathic Arthritis (JIA): Jenn, Cole, & Joseph Share Hope & Practical Experience: healthunlocked.com/nras/pos... 🙏 🌺 🍀 🌞

  • Thankyou I'll look into it now!

  • Hello,

    I have read in several treatment recommendations for JIA that elimination diet can have a very possitive effect. Have you ever tried any diets?

  • Yes it was suggest by Dr that often gluten can cause a leaky gut and a leaky gut can trigger RA. I went gluten free late 2015 as a preventative measure to keep my RA in remission. But come September 2016 it was back! Is there any other suggestions you might have!

    Ta

  • A more strict elimination diet could be an idea. Look at Kai's posts😊Also checking your thyroids and estrogen-progesterone balance as well as Vit D3. A thorough check of thyroid.

    precisionnutrition.com/thyr...

  • Hi Kristy and welcome,

    I cant really add any other advice to what you have here - methotrexate works for me so I'm not experienced with any other meds.

    There is a group called CeakyJoints which have an Australian arm (they originated in the US and recently started a site Oz based) and they may be able to offer advise as well.

    All the best

    ALI

  • Hi I'm a newbie diagnosed so can only really suggest apart from the DMARDs put on I just take naproxen and steroids to help with pain. One thing can say is that the Jaw is a symptom has had few times myself. I hope you get it sorted and feel better soon x

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