Rheumatoid Vasculitis

maryow
maryow Member Posts: 9
edited 17. Nov 2011, 07:30 in Living with Arthritis archive
Does anyone have rheumatoid vasculitis? I've just been diagnosed with it which was a bit of a shock, I had a rash and as I was due to start golimumab this week and have previously had allergic reactions to sulphasalazine, the enbrel injector pen (but not enbrel - it worked really well for me for a year) and humira, I didn't want my rheumy nurse (who is absolutely wonderful) to think i was allergic to goli as well so I emailed her a photo of the rash on monday. She rang me almost immediately and told me I had to go and see the consultant there and then, a 90 mile round trip as I live in the Lake District.
I haven't been able to find out much about RV other than it seems to be quite rare and seems quite nasty. I'm 31 and also have RA which was diagnosed in Jan 2010 and has been flaring really badly for the last couple of months. On monday I was put on 40mg prednisolone a day which seems quite a high dose and have started golimumab today. I'm not on mtx as it didn't work for me at all. I haven't noticed any improvement yet with the steroids but depo jabs and steroid infusions have never worked for me so I'm not holding out much hope for the tablets!

Sorry it's such a long moaning post, any advice would be appreciated.

Mary

Comments

  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Mary

    I am sorry to read your post. You are really going though the mill. I have had a look around the forum and the only reference I could see regarding Rheumatoid Vasculitis was in a posting in the cafe by Trisher a long time ago about a consultant saying she had RV and then saying it was Raynaulds but was still unsure as he looked at her hands. Trisher unfortunately does not post on the forum anymore but I am not sure if she looks in or not.One of her friends may see your post and let her now although I understand she is not at all well atm. Another member posted a long time ago about Rheumatoid Vasculitis in regards to her dad but there were no replies from any of us.

    I am sorry I cannot help you but I am wondering if a chat with the helplines may shine some light on your questions and worries. At least you could have a chat with them. It is good to talk.

    Please for goodness sake, do not apologise for "moaning". That is what this forum is for and anyway, you most certainly do have something to moan about and I am feel extremely sorry for you.

    Hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • frogmorton
    frogmorton Member Posts: 29,837
    edited 30. Nov -1, 00:00
    HI Mary

    gosh you poor thing you must have been scared to be called in so urgently! I know l would have been.

    I do hope that the goli will help you - someone else on here has had great results on it (might be firemanphil???) that should help get it all under control maybe?

    As for the prednisilone.....l had an allergy thingy once (urticaia vasculitis - why l looked at your post!) and had jabs for it initially. Not successful, but then l had oral steroids and bingo they worked fantasticly for me.

    Lovely to meet you

    Toni xx
  • frogmorton
    frogmorton Member Posts: 29,837
    edited 30. Nov -1, 00:00
    Mary l have bumped up a thread on golimamub

    Hope it's useful

    Toni xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Mary
    And welcome to the forum, has Toni as said our firemanphil has had really good results on the meds, I do hope you get some relief very soon, and dont forget we are always here if you need to talk or have a good rant.
    Love
    Barbara
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    hi Mary,

    sorry to read your having troubles with vasculitis. i haven't got ra i have oa and pa but i have had a bit of 'ordinary' vasculitis and its not that nice is it? I expect you been told what to do with your legs but mine was rest them, rest them and rest them some more as well as keep them raised and warm as mine was circulation linked.

    i hope the preds will help you and you soon have a few less problems and wish i was able to help but i don;t do well on preds and am not on the golimamub but just wanted to offer a bit of support to you. Cris x
  • maryow
    maryow Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks for your replies, I haven't noticed a dramatic improvement yet but my legs no longer feel like they are going to explode and I'm hoping my joints might start to feel a bit better soon. I'm seeing my rheumy nurse again on 29th November and I've got a huge list a questions for her.

    Hope you are all ok today. Thanks again

    Mary

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