Rheumatoid Vasculitis: serious disease, difficult treatment.

My first post here.

I've been battling Rheum. Arthritis for 50 years, was diagnosed with Rheum. Vasculitis 30 years ago, went into remission, and returned in August, 2017 with foot drop, weakness and decreased sensitivity in one leg. Since then, have been on daily steroids and chemotherapy with cyclophosphamide intravenously. After 3 months, no change in symptoms. Chemo and steroids side effects are troublesome. Nausea, diarrhea, insomnia, weight gain, mood swings, fatigue, etc. After partial hearing loss and breathing problems (suspected due to cyclophosphamide) am being switched to azothioprine. Looking forward to tapering steroids. RV has diminished the quality of my life and though I still hope for remission, I understand that given my age, this is what the remainder of my life may look like.

Good luck to all of you.

[Katie18]

I really do hope you do get a better quality of life cyrano and that your symptoms improve. It sounds like you are going through a rough time. I'm not a clinician but maybe they will try you on rituximab if cyclophosphamide hasn't helped. Do keep questioning your clinicians. I have churg Strauss and I am on azathioprine which I tolerate well. I was on high doses of steroids but these have been decreased v slowly and now I no longer take them. Best of luck and do ring the Vasculitis helpline for any advice you need - they are very knowledgable & can usually help.

[Hidden in reply to Katie18]

Hoping to wea off steroids as you have done; too many bad side effects. Before RV had been on Rituximab for a year which helped tremendously with RA. High doses of steroids are keeping RA quiet now.

Thanks and good luck.

[v4227]

My daughter was diagnosed with RV after being hospitalized for extreme muscle loss and while in the hospital suffered a brain bleed and was in ICU for 10 days heavy drugs for the worse headache ever and she should know, she has had migraines since childhood she turned 40 in ICU. Currently on steroids and a list of others. So we feel your pain and good luck to you. She is now 1 year later almost back to normal, her hair is thinning but we pray no more muscle loss or brain bleeds. The doctors say it would not happen again but they also say it should have never happened in the first place. She and I both have RA.

Victoria

[Hidden in reply to v4227]

Sorry about your daughter. RV is such a puzzling disease: how it comes on, what it does, how to treat it... So hard to deal with. Be strong. Good luck.

[Hidden]

I was diagnosed with Rheumatoid Vasculitis after treatment for breast cancer. My symptoms were the most awful rash on my legs, lower back and stomach. As soon as my Rheumatologist saw it, she knew what it was. I was put on high dose steroids, but as I had Cyclophosphanide with my chemo for breast cancer, I wasn't given that. I also had Methotrexate, which Also helps with my RA. I'm now on 5mg Predniolone, and Rituxiab. I'm still learning about this disease, and would advise you to visit Vasculitis UK, or the US site, vasculitisfoundation.org/

[Hidden in reply to Hidden]

You have so much to deal with, so many meds, so much to juggle in your treatment. RV is not for sissies. I keep telling myself to stay positive, be strong and don't give up hope.

I wish all of that for you.

[Hidden]

UPDATE: My thanks to those who have reached out and shared.

I've been on azathioprine for a few weeks. Vasculitis symptoms which first presented in my right foot & leg have now appeared in my left leg, right hand and left hand.

My compromised mmune system, further weakened by chemo meds, was overwhelmed by infections recently as I was hospitalized with the flu, bronchitis, pneumonia and a racing heart. It was the sickest I've ever felt, with fever, chills, violent coughing, chest pains and gasping for breath.

A subsequent CT scan led to a diagnosis of Churg Strauss Syndrome, i.e., vasculitis in my lungs.

Life is hard. Life goes on.