In March I went to a new rheumatologist at a world famous teaching hospital. He is co-director of the vasculitis program and quite expert. It took persistence to get an appointment.
My previous rheumatologist diagnosed me with Polymyalgia Rheumatica in 2016. She ordered an ANCA blood test in 2017 because of my ongoing (forever) sinus issues. It was positive. She repeated the ANCA test each year for six years and it was always P-ANCA positive, with rising MPO antibodies. I was essentially told not to be concerned.
After needing to return to using an inhaler after 15 years without, I got a pulmonologist in 2022. He did two chest CT scans (6 months apart) and they were abnormal with extensive ground glass opacity. He said “this looks like vasculitis.” My previous rheumatologist would not say I had vasculitis without a VATS biopsy. My pulmonologist strongly encouraged me to get another set of eyes on my records and images, someone with more vasculitis experience.
My new rheumatologist has diagnosed me with ANCA vasculitis (GPA). I don’t need a biopsy. He said I may never have had PMR, or that I may have had PMR and the vasculitis brewing at the same time. He said I’m lucky — my illness is systemic but right now non-severe. I’m extremely responsive to steroids and the PMR steroids may have helped keep inflammation at bay for awhile.
We discussed treatment options and I’ll be starting Rituximab infusions soon after a bit of “housekeeping,” catching up on vaccines I’ve missed and so on. It’s a lot to process and infusions sound scary but clarity is a wonderful thing. If anyone cares to share positive Rituximab experiences that would be lovely.
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SusanEleven
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So happy for you that you sought help and finally have a diagnosis. We have been in contact before and realized that we are almost neighbors, living near Boston.
I was diagnosed in Dec. 2021 with MPA (Microscopic Polyangiitis) which is treated the same way as GPA. In the spring of 2022 I went through 4 ( two weeks apart) infusions of Rituximab and at the same time began to taper prednisone. and by the summer I was in drug induced remission. Since then I have had 2 maintenance infusions and will do such every 6 months for at least another year. I was anxious anticipating the first infusion, but I tolerated it well and it is nothing to fear. It does take a long time,(count on about 6 hours) because the drug drips in very, very slowly. I bring a book, my lunch, and my iPad.
The drug is a miracle as is prednisone. I make sure that I eat well, take a long walk daily, and often take a nap in the afternoon. Sounds like you are in good hands!
The Vasculitis Foundation is a good reference for information.
We are close …. I’m on the North Shore and my doctor is at MGH.
Thank you for letting me know that you are doing well and that rituximab has worked well for you. It’s very reassuring about both the drug and the infusion process.
I’m getting my shingles vaccine series before we start and a few other things. I just had another Covid booster yesterday and my body registered its displeasure by releasing every possible side effect
My experience of rituximab has been positive like the others. I was diagnosed August 2021 and was in kidney failure by that time. The rheumatologist I’d been to see months before about me not being able to move my joints said I had hyper mobility (I don’t).
Anyway, year and a half on with rituximab every 6 months and I get the odd grumble but have been in pretty solid remission with my kidneys improving (likely as good as they’ll get now but I’m pleased with where I’m at).
I also get sleepy with the antihistamine and find that the high dose methylprednisolone and the antihistamine they give throws me out of sync for a few days, so perhaps anticipate you might feel a bit sleepy for a few days after too. Not everyone does but I personally need to take 2 days off work after rituximab.
I’m sorry your correct diagnosis was delayed; it seems to be a common part of all our stories. My former rheumatologist said she only saw vasculitis patients when they were in kidney failure or coughing up blood. My forever sinusitis, positive ANCA tests and pulmonologist report didn’t seem to spark a sense of urgency.
It’s good to hear that you’re doing well now and that rituximab has been and continues to b a positive for you. And I appreciate the advice — I’ll plan to take it easy post-infusion.
Hi Susan I am glad you finally have your answers mine took a long time to diagnose to. I had kidney involvement and slight damage that could have been avoided if diagnosed earlier. I was put on prednisone and rutuximab which put me straight into remission. Just be prepared for a long day we call it unicorn juice here in the UK as it seems to have magical results. Good luck hope all goes well for you.
Unicorn juice! I love it. And I’m glad to hear of your success with rituximab. I know this disease is rare but I’m still surprised (or maybe sad) that a late diagnosis seems to be the standard.
Hi SudanElevan. Your story is so familiar to us, and as you can see many of us can relate to it with sympathy but positively. I like you needed an inhaler, didn’t know what wax wrong with me, all sorts going on but finally diagnosed 3.5 years ago. After tries with various drugs I started on Rituximab 2.5 years ago. It’s been a game changer for me, taking out the Covid precautions my life has become quite “near normal” yes it’s true you can get a few indifferent days and some side issues with bloods (low sodium for me, alcohol induced though to be honest) that throw the odd imbalance but generally I wouldn’t be without it. They say you have very little chance of reacting to the drug and 90% of those cases it happens during the infusion so you should be fine. Take care and enjoy the rest of your life. Nick.
Thank you Nick. These personal stories mean a lot to me. The not knowing for years has weighed me down. I can’t remember what it’s like to not feel a sort of base-level awful. “Near normal” life sounds wonderful. I’m happy you’re another treatment success .
Hi SusanLike you I was misdiagnosed for years now have a wonderful consultant who specialises in vasculitis, at first I had 6 doses of chemo as I had various benign tumours, (back of eyes, kidneys and liver) once that was done I was put on azathioprine for a year that worked lovely but then I relapsed tried methotrexate but didn't suit my body, so I now have rituximab, it was every 6 months but it killed off my blood cells so now have it every 9 months and I feel so much better, like they say the first time is the longest but it is by no means unpleasant, so good luck with the treatment, I hope it all works out well for you xx👍💕
Thank you for sharing your story. You’ve had quite the journey. I’m glad you feel much better and that rituximab is doing a good job for you. I’ve read a little about how it was developed and wow. ❤️ science. I’m optimistic now that I have the right doctor.
I also have been diagnosed as having contracted GPA (2018) following a bout of polyangitis- (MPA) in 2016. Luckily no lung or kidney problems. My main symptoms included loss of hearing and a collapsed nasal bridge. I had initially responded well to steroids and the immune suppressant Mycophenolate Mofetil, but by 2018 I started to relapse. After this I had 2 sessions of Rituximab but unlike others commenting I did not improve. I was quite stressed by work and personal circumstances at the time.
I was obviously disappointed not to have responded and couldn't help thinking I should have been allowed to continue the treatment a bit longer as Rituximab is usually very effecrtive.
However, my treatment was changed to a course of cyclophosphomide which causes nausea and hair thinning - it did however do the trick and I am now off steroids but still taking immunosuppressants (azathioprine). The vasculitis is sort of now in remission but I have had some eye problems and still suffer from fatigue and sinus problems - My main criticism with the treatment I have received is - I was not monitored carfully enough when taking steroids over a period of 3 years. As a side effect of long term steroid use I developed osteoporosis and fractured my vertebrae in a fall This continues to cause me discomfort and has reduced how much gardening and walking I can do.
Everyone responds differently and as you can judge from this your consultant will need to experiment to find what is best for you. However, do make sure that if you have to take steroids long term you're monitored to check for signs of osteoporosis. Best wishes for the future!
Thank you. You have certainly had a journey and it sounds like there have been many ups and downs to deal with.
I’m hopeful now that I finally have a diagnosis. My new rheumatologist says he won’t be putting me on higher dose steroids as part of my treatment, just for now keeping me on the low dose I ended up at after 7 years with my original doctor. I’ve been highly responsive to steroids since the beginning.
My bone density isn’t great though, and wasn’t even before steroids.. Osteoporosis in the spine. A fractured vertebra 20+ years ago after fall. I appreciate what you’ve shared.
I have GPA anca to your question about ritixamab it was a life changer for me it made me feel normal again I had 2 transfusions and did so well have gone 15 months and counting without
I'm om 6 steroids a day could not tolerate oral medicine and feel good I take a salt spray for my nose and antihistamine for pollen I'm doing OK go for it good luck
Thank you Rita. I’m a 1956 myself 😊 A game changer sounds wonderful and 15+ months without additional infusions is terrific. I’m glad Rituximab really worked well for you.
The pollen is a beast this year where I am. I use a Neti pot with saline rinse and am on a daily antihistamine until the tree and grass pollen settles down. Plus something for my eyes.
Thank you! I appreciate the details. Benadryl really knocks me out. My doctor says I’ll also get 100mg of prednisone. It will be interesting to see how my body processes those two together
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