Does anyone have any experience with rheumatoid vasculitis?

I have had severe RA for 35 years and for the last nine months continue to get nail infarcts..Painful sores or black dots around my finger nails and on my fingers, a form of rheumatoid vasculitis. IV steroids and oral steroids are not stopping it. And I am on 1000 mg of Orencia every four weeks,I does higher than my weight limit but an attempt to calm down the rheumatoid. Anyone have any experience with this?


Community Answers
  • CiscoRafael
    6 months ago

    Hi, JJ – I have fought the good fight with RA for 50 years and am now dealing with my 2nd time with Rheumatoid Vasculitis.
    My Vasculitis involves nerves in my limbs, as well as Churg-Strauss Syndrome in my lungs.
    From my experience, you need really good doctors that you have complete confidence and trust in.
    From my research, I learned that the gold standard for treatment seems to be a combination of steroids and chemotherapy.
    That treatment helped the first time and seems to be helping now, though with complications.
    RV is a rough road to travel and I wish you all the luck and good care you will need.
    —Cisco

  • JJ author
    6 months ago

    Thank you so much for your response. I am very sorry for the difficulties you are experiencing from RA. I can truly sympathize with you. It seems that only those of us with long standing RA are those that get Rheumatoid Vasculitis & then only1 percent at that. I had a recent GI bleed so tomorrow I go for endoscopy & colonoscopy to see if it is RA vasculitis affecting the GI tract.UGH…the prep today is awful!!! Wish me luck

  • Richard Faust moderator
    6 months ago

    Hi JJ. Yes, rheumatoid vasculitis is rare (more so than I thought). Don’t know if in your research you have come across this, but thought I would share this page from the Vasculitis Foundation on rheumatoid vasculitis: https://www.vasculitisfoundation.org/education/forms/rheumatoid-vasculitis/. Hope you find some answers and relief. Best, Richard (RheumatoidArthritis.net Team)

  • JJ author
    6 months ago

    Thank you Richard for the info. I appreciate all of the input greatly

    Joanne

  • Erin Rush moderator
    6 months ago

    Hi jj! I am so sorry you are dealing with rheumatoid arthritis and vasculitis. Various types of vasculitis are a fairly common comorbidity of RA, so I do hope you hear from some of our other members that may be experiencing both conditions. Here is some information on comorbidities and RA — https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/. Definitely keep talking to your doctor if you feel that your current treatments are not working for you. I sincerely hope you get some relief very soon! Best, Erin, RheumatoidArthritis.net Team member.

  • JJ author
    6 months ago

    Thank you Erin for your response and information provided. Since I have yet to hear from others about rheumatoid vasculitis, It appears that no one elee is dealing with it. This is not surprising since only
    1 percent if rheumatoid patients experience it.
    Lucky me!

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