hi, this could take a while....

thistlegirl Member Posts: 229
edited 23. Jul 2013, 14:24 in Say Hello Archive
Hi, I am 34 year old female and was diagnosed with JRA when I was 18 months old. My disease came and went frequently throughout childhood but has been constant since my early 20s. So for almost 30 years I had sore, inflamed, stiff joints and low energy and I coped, school, uni, full time job. A few hiccups every now and then but a resit or an extra term at uni got me through.
A few years ago they changed me off infliximab (a drug that I had been on for over 3 years, the longest I have ever been on a drug and not reacted to it and it was being effective) Adalimubab? is cheaper to run. 2 months later I was completely seized up and hospitalised as I wasn't able to move enough to look after myself, This was the first time in my life that the disease had won, it has taken almost 2 years but I am almost back to "normal" but my fatigue is rough. I am now on Abatacept.
I also have Uveitis, Iritis since I was 16.
I have just been diagnosed with lobular panniculitis - large lumps have grown on my abdomen and cheek. This is knocking me a bit the cheek one hurts later on in the day as the weight pulls on my jaw. At the moment I am frustrated as I want them gone and other than my GP I haven't had a doctor take responsibility for it Rhumy, dermatologist?
Does anybody else have panniculitis?
I may post on one of the other threads too.

Yes I am Scottish :wink:


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I hope we can help with support. I have not heard of panniculitis, it sounds very uncomfortable to say the least! I read your other posts on LWA and I too would urge action rather than patience. I don't often advocate googlling but in this case it could be a useful exercise so that you can arm yourself with information.

    I have psoriatic arthritis and have had my meds altered but only when they stopped 'working'. I began mine aged 37 but childhood was a struggle with severe eczema and asthma. I admire your attitude and fortitude, that is what gets us through, yes? I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi thistle,

    Welcome to the forums I am afraid I know nothing about your condition it all seems rather complex, I just want to welcome you on board you have come to a very caring and supportive place, lovely to meet you and hope to see you around(I am Scottish as well, near Glasgow)........tc............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • frogmorton
    frogmorton Member Posts: 29,036
    edited 30. Nov -1, 00:00

    Wahay the first person on here to mention the lumps. I had them with my first (and worst) flare in my shins/calves. They were so sore and as usual one leg came first and felt like a bruise. I even worried it might be a DVT!!!

    I think the rheumy called them eryth-something nodosum??? I have had them since but never like that.

    I would be asking my rheumy for help with your if I was you though......mine was the only person who knew straight away what they were.

    Anyway lovely to meet you. I am not Scottish, but my nephew is and my sister lives in Dundee :)


    Toni xx
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    Hi Toni!

    Erythema Nodosum? Just did some googling, my GP recommended dermnetnz.org
    Yes we both have the joy of belonging to the panniculitis club.
    How big were yours and how long did they last?
    The difference seems to be with mine is that there is increased blood flow to the lumps. I think mine are not as likely to go away by themselves, although they are growing and changing shape? My Rheumy doc has said that she is not responsible for them, she is normally very good so I don't think she is fobbing me off? I don't have an appointment til November with her but the GP has been good and I have an appointment with plastic surgery on Thursday to discuss cutting my cheek one out and a biopsy appointment for another one "just to be sure...."

    My GP is great , she said to me last visit "Don't feel you have to be interesting all of the time, it is ok to have boring illnesses too!" - if only!!

    I was surprised at how tough this was to get diagnosed, I am hoping after the Biopsy I will get a plan of action and what to expect, will there be more?

    Thanks for the support