Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

What are flares like anyway? Flare up after 2.5 yrs peace

MamiSandraMamiSandra Posts: 7
edited 27. Feb 2014, 02:54 in My Child Has Arthritis
Hi,

My 9 year old son was diagnosed with oligio JIA when he was 6 years old. At the time, one knee and 3 ankle joints (in the same ankle) were affected. We were advised to put him on methotrexate, but told we could try steriod shots first - which we did. The knee cleared up within a few hours and the ankle took 7 weeks to come right.

We have been blessed with 2.5 years of remission. Every time we went for a check up, they assured us that the nearer we get to 3 JIA free years, the less likely it is the condition would return.

On Friday, the unpredictable condition that JIA is raised its head once more, tapped me on the shoulder and reminded me of the grip it has over my boy and how it can torture us all at will. Put simply, my boy came to me and said his knee hurts - and sure enough it has blown up. Hot, swollen, painful - the lot. And I am devastated. Remission makes you feel normal, makes you forget JIA, but the longer it lasts, the deeper the fall you feel when JIA returns. All the old anxiety and uncertainty is back. We were so full of hope it would never come back. What will it do to my boy this time?

My question to you all is simple: What is a flare really like? Does flare always mean a full blown episode needing full intervention (such as steroid injections)? Can flares ever be dealt with just with anti-inflammatories (he is on Naproxen)? Are we back to square 1? Any shared accounts of flares would be much appreciated.

Thank you.

Sandra

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry that you have had to find us. I am not a mum, just an aged hag with an auto-immune arthritis, but for me a flare involves hot, swollen joints, incredible tiredness and increased pain levels. It doesn't ease in hours or a couple of days, it drags on and on. It may be different for children - have you contacted his rheumatology unit? I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Julie37927Julie37927 Posts: 35
    edited 30. Nov -1, 00:00
    Sandra

    I'm going to be a little more optomistic and say, because of his age, his flare up may be less painful and last less time, perhaps even include fewer joints. Sometimes flare ups are worse but often are less intense than the original attack. He and you are both now experienced and know what to expect from the disease, having been through the whole thing 3 years ago. You know already what works and what doesn't with the meds and injections. Please don't be disheartened, I believe that remission can happen again and last even longer. Be strong and good luck to you both!
  • MamiSandraMamiSandra Posts: 7
    edited 30. Nov -1, 00:00
    Dear Julie37927

    Thank you for your encouraging words. What I need right now is the courage to stay positive, and your words help me a lot. I am trying to be realistic of course. There are my friends who say "It might just be a sprain." But I know this horrible disease! I know it is showing its ugly face again.

    I think what freaks me out the most is the fear that it will change from oligo to poly or systemic. But I think this is my mind catastrophising because the evidence suggests that once an oligo for at least 6 months, you are most likely to remain an oligo for the rest of your time with the disease. When he was originally diagnosed with it 3 years ago, I keeled over with severe depression and ended up on meds myself. I am sure lots of the people on this board know this feeling. I simply cannot support my boy well enough if I automatically assume the worst.

    He is on the maximum dose of Naproxen with a PPI. I am chilling his knee with ice packs for short periods of time whenever there is a chance. And they do seem to help. His knee was 1 cm slimmer last night and less painful - but if this is just a passing fluke of hope - who knows. At least I know I am taking this thing on with all means and methods. These icepacks I am using are great. They come in velcro fastening sleeves, so you can even walk around with them on. Hours of fun! (Not!)

    I am waiting for Gt Ornond St to ring me back on what next. If they say a shot of steroid is in order, then so be it. I am taking comfort from the fact that his foot hasn't blown up this time. Perhaps this is a sign that this flare is milder than the original episode - thank you for making this point.

    I tried to find out if flares are usually milder than the first outbreak and you have shared your experience - which is really great to know. Thank you so much. If there is anyone else out there who would like to share their experience of a flare with me - please get in touch.

    Sandra x
  • MamiSandraMamiSandra Posts: 7
    edited 30. Nov -1, 00:00
    Dear dreamdaisy

    Thank you for your reply and kind words.

    Yes, I am waiting for GOSH to ring me. We are not going anywhere fast right now anyway :(

    Sandra x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Ah I know that feeling well - it's always a case of 'Hurry up and wait.' Auto-immune arthritis is like a sleeping dragon, you just never know when it will nod off or wake up. Mine is currently dozing thanks to the meds but every now and again it will have a snap at me just because it can. It's exasperating - I prefer my osteo arthritis because that is far more honest in the way it presents.

    I hope you hear from GOSH soon and that they can do summat to help him and therefore ease some of the pressure on you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
Sign In or Register to comment.