Anyone have vasculitis or Bechet's?

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mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 7/13/2007 11:01 PM (GMT -7)   
These are the things my rheumy is testing me for now. I didn't like what I read online about the potential complications of vasculitis, and that the only meds to control it are steroids and methotrexate (sp?).
 
If you have vasculitis, with or without another autoimmune disorder, I'd love to hear your experiences.

Thanks!
Kari
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/13/2008 9:47 PM (GMT -7)   
Hello, Kari!!

My husband has vasculitis (secondary to Hep C and cirrhosis of the liver). It is so very painful!! He had been on steroids for about a year, and they were causing him too many problems. Currently, he is going through a chemo infusion of a chemo drug called Rituxan. Should be a total of about 4 infusions and then no more, or possibly re-test and do another round in 6 months, depending on what the bloodword shows. Our rheumatologist says it has been successful in treating vasculitis in that it kills off those antibodies/antigens that are at war with each other. The theory is that after the treatment, your body will re-generate new, healthy cells......wee have had three infusions and the last one is next week. So far, he has not broken out with the vasculitis. He was typically breaking out every couple of weeks and wreaking havoc on his body. We started stepping down off the prednisone and he is currently on 10 mg/ day and will be off the prednisone totally in another week or so!! Hope this helps......

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/15/2008 6:03 AM (GMT -7)   
bumping this back up for Kari . . . in case any other members can reply.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/15/2008 7:53 AM (GMT -7)   
Hi Kari,
 
I have vasculitis.  To be honest, it doesn't give me any complications as long as I'm controlling it with prednisone. I do sometimes get little "splinter hemorrahges" on my nails, which is an indicator that it's acting up, but usually I notice them go away on their own. 
 
There really isn't anything to worry about as long as you're getting it treated properly.  Sometimes, even a low dose of prednisone is enough to treat it.  Is your vasculitis severe?  What symptoms are you getting?
 
I know that going on prednisone isn't something you want to do.  But if it's necessary to keep you alive, you have to do, what you have to do. Vasculitis can cause a lot of serious issues, but when treated properly, you should have no problems.
 
Hope this helps!
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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