JRA, Lobular panniculitis help

thistlegirl
thistlegirl Member Posts: 229
edited 19. Jul 2013, 05:11 in Living with Arthritis archive
Hi, I just posted this on the Hi forum but figured the intro would be helpful. main question is at the end of the looonnnggg intro, sorry.
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? does your rheumatologist treat it or someone else? What treatment were you given?

More questions but that will do for now.

Thanks
Thistle

Comments

  • stickywicket
    stickywicket Member Posts: 26,917
    edited 30. Nov -1, 00:00
    Hello Thistle. It's good to meet you. Please don't apologise for the 'long intro'. Sometimes length is necessary for a clear picture. Anyway, it wasn't all that long by some standards :)

    Well, you've certainly had a tough time of things but you've really shown your arthritis who's boss. Well done on getting your degree and holding down a full time job!

    I'm so sorry the change of meds had such a drastic effect on you. I know they are all expensive but it sounds as if it was a bit short-sighted on their part and quite devastating for you. I'm glad the abatacept is now helping.

    Quite frankly, I've never heard of lobular panniculitis and I'd be surprised if anyone on here has it as I don't think the term has ever cropped up. I do think though that, in your shoes, I'd want to be seeing an expert rather than just the GP. Personally I'd go for my rheumatologist as (s)he will know you and, if the dermatologist is needed, can probably refer you more quickly than your GP. I presume you have a rheumatology helpline number to ring? That'd be my first port of call.

    I think it might also be worth contacting our own Arthritis Care helpline people as they might have more info to offer you.

    I do hope someone can help and quickly.
  • 19smp59
    19smp59 Member Posts: 105
    edited 30. Nov -1, 00:00
    Hi Thistle

    I'm sorry I can't help with any advice, but would just like to say that it's stories like yours that really put things into perspective. I have such admiration for you with all you have achieved despite your health problems.

    I hope you get the lobular panniculitis sorted out soon.

    Good luck

    Suzanne x
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    Stickywicket,

    Thanks for the support.

    The change of meds debacle made me questions the docs for the first time in my treatment, they have always done a really good job and what they said I did but now I do question. To be fair on them they are listening to me.

    I had never heard of Panniculitis until now either, my GP recommended a website Dermnet NZ which is great. One of the listed link was to Rheumatoid Arthritis. It is easy to forget that it is not just joints that this disease likes!
    Yes I think I will call the helpline, I have been trying to wait patiently but that isn't working. It doesn't help that I am on school holidays at the moment so I have more time to dwell in it.

    My friends call me Lab Rat, I think you know why :wink:
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    19smp59

    Thanks for your kind words. I was brought up to look at what I can do and work with it, not what Arthur was stopping me from doing.

    The new diagnosis is tough at the moment, once I have a plan of action for it I hope I will feel better but now I am frustrated :?
  • stickywicket
    stickywicket Member Posts: 26,917
    edited 30. Nov -1, 00:00
    Ah friends! Dontcha just love 'em :lol:

    I'm glad the docs are listening to you. I think thos cruddy disease is better if we can all work as a team.

    I'm not sure that patience is a virtue in your situation. I'd want to do all I could. It seems that you might have the time right now so go for it. I hope you get some answers.
  • mig
    mig Member Posts: 7,152
    edited 30. Nov -1, 00:00
    Hello you,I consider myself one of the lucky ones in that RA didn't hit me till I was in my early 60s so I have had a good life and continue to do so with the help of my family and the good folk on here,though you may never meet them I consider them some of my closest friends,so I welcome you and hope you settle in with us .Sending you some hugs (((()))) Mig
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    so it has been a busy day...
    I went to my GP this morning, different doc than before but they are all good in my practice. She was ok, checked that the referrals were going through and suggested that I called the rheumatologist helpline to get some answers.
    The helpline got back to me and took my questions, about who is in charge of my lumps, to the consultant and I got some answers.
    They are not who will be in charge, my first person to call is the doctor I saw in general Surgery, he is going to biopsy one of my lumps on the 30th so I guess i will talk to him then.
    The GP is there to coordinate it all etc.
    I also came home to a letter from the plastic surgery dept. I have an appt with them on the 25th to discuss removing the lump on my cheek.

    I feel a bit better now that I have some steps in place. They have obviously talking to each other but not to me!

    Fingers crossed I will have some answers soon. Thistle
  • stickywicket
    stickywicket Member Posts: 26,917
    edited 30. Nov -1, 00:00
    That sounds better, doesn't it? At least progress is being made and stuff dealt with. Please keep us updated, thistle. I hope all goes well on 25th.

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