Vasculitis UK
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I was diagnosed with rheumatoid vasculitis back in October 2012 as a secondary condition to rheumatoid arthritis - I also suffer from fibromyalgia.

My rheumatologist is treating the ra with tocilizumab (roactmera) with the thinking that if he treats the ra, the rv will take care of itself. The other problem with the rv I have is that it affects my bowel and causes diverticular type problem.

So is my rheumatologist right to treat the rv in this manner, or should he be conferring with a vascular surgeon. I have had no tests for the rv, the diagnosis was done on visual inspection. Given that we know my bowel is affected, there have been no scans for this and no tests to check my lungs (I get very short of breath as well) or any other organs. I should point out that I am 44 years of age. Should I be pushing for anymore?

If both the ra and the rv were under control, I would of course not be pondering this. Any assistance/guidance you can give me is greatly appreciated.

Thanks for reading, Nina x

3 Replies

hi nina, I have ra. and fibromyalgia and another form of vasculitis called Wegener's Granulomatosis. I don't know about rv or the drugs you are on.

I didn't want you to think you were being ignored, it's quiet on here at the moment.

I'll send you a pm click on the word messages on the green banner at the top of this page,




Hi Nina,

I would go along with what your doctor/specialist says as at least if your condition doesn't improve then both you and your specialist know the need to treat the RA, RV, separately and both treatment could compliment each other. Many forms of vasculitus can have a secondary RA and OA conditions.

I also wouldn't automatically jump to a vascular surgeon as many forms of vasculitus do not need surgical intervention, most cases can be treated with steriods and other medications.

I would ask your specialist to have your symptoms RV diagnosed for definate by sending you for the appropriate tests whilst he treat your RA. Then if the test come back positive for Rhuematiod Vasculitus you haven't lost any time for the RV to be treated with.


Thank you all for your responses. I think that obtaining a definite diagnosis for the rv is imperative as they do actually put this on my list of conditions when I have treatment.

Thank you again Nina x


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