Vasculitis UK


I was diagnosed with anca associated vasculitis MPA in May 2017. I was treated with 6 sessions of cyclophosphamide and heavy doses of prednisone. My creatinine is currently 3 and my gfr is 18. I am still suffering from severe fatigue and shortness of breath. I also suffered a central retinal vein occlusion in my right eye which calls for monthly injections into the eye to control swelling. I also have severe major joint pain and am now noticing numbness and a burning sensation in my left leg from the hip to the knee. Also I have developed what seems to be some hard lumps on my left elbow and right knee. My cardiologist and pulmonologist could find nothing wrong. I am waiting to see the rheumatologist now.

3 Replies

Hi, it sounds like a rheumatologist is the best consultant for you. Make sure you are referred to one with good knowledge of vasculitis. If you say where you are being treated there are people on this site who will be able to advise you on that. I have gpa and recognise many of your symptoms, including the lumps on your elbows, from a flare a few years ago. All disappeared with appropriate treatment.


Hi Retire i was diagnosed same in Nov 2015 and had Cyclophos and high pred steroids for same time then after flare up i went on to Rituximab which so far has helped but i too have joint aches which being 67 is probably Arthiritis.Seems like the body is slowing down somewhat but my GFR is 36-42 range which is not too bad.Its a long hard road with ups and downs and in many ways have to have trust in my consultant which i have.Hope this helps you are not on your own.Good luck.


Joint pain has been a feature of my GPA. I have had osteoarthritis for many years beforehand and although it is painful, the joint pain from GPA is in another league, often associated with pins & needles. I've also had peripheral nerve damage in my left leg, leaving my toes numb. On top of this the prednisolone has effects on my joints, tendons and ligaments. I'm currently having physio for tendon damage in my right foot. The rheumatologist has been the best person to advise on all this but my renal consultant takes my joint pain very seriously as an indication of disease activity. I've not experienced remission yet (been ill since Sept 16) so there's been a lot of ups and downs. Like you I've also had eye issues, am currently short of breath and very fatigued. One theory about the shortness of breath is its reflux from my sore stomach coming up and irritating my airways. Hope you can bring on more specialists to work together and look after you, it makes so much difference when doctors talk to each other.


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