New to ANCA Vasculitis: I have searched the... - Vasculitis UK

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New to ANCA Vasculitis

GinnyMa profile image
14 Replies

I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate. My fatigue is overwhelming and I thought I was suffering from withdrawal symptoms, but my Rheumatologist said no, it is just the disease. I would love to share information and suggestions with others about the disease…..it is a lonely journey.

14 Replies
John_Mills profile image
John_MillsVolunteer

I see you are from the USA . I also have ANCA vasculitis , diagnosed 21 years ago. Now in full remission.

You can read about ANCA here if it helps.

vasculitis.org.uk/about-vas...

Truxima is a biosimilar to Rituximab,

I am waiting for my 4th vaccine, sadly Evusheld has been approved in the U.K. but as far as I know is not available at the moment. theguardian.com/business/20...

Sadly, extreme fatigue is part and parcel of all types of vasculitis but not for absolutely everyone.

ancavasculitisnews.com/2019...

Hope all the above helps.

GinnyMa profile image
GinnyMa in reply to John_Mills

Very helpful links. Thank you John.

eh66 profile image
eh66

Personally I found until your condition is under control you have to live with the symptoms, I slept better and ate less stupidly, once I was off prednisone. The joys of this condition are you have good and bad days. My consultant suggested to me that life style (diet, exercise - not in early stages etc) can contribute to a better out come and reduce impacts of other infections. Good luck

SusanEleven profile image
SusanEleven

Hi GinnyMa. I'm also in the US. I'm still awaiting a diagnosis. I've tested P-ANCA positive since 2017, with stable low levels of anti MPO antibodies, but there have been no obvious signs of symptomatic disease. The only reason I was tested was my rheumatologist wondering if my chronic sinus problems were a clue to something else.

In my latest ANCA test (March of this year) the antibodies nearly quadrupled. My rheumatologist says she's worried about me. Which of course worries me.

I have had polymyalgia rheumatica (PMR) for around six years, finally considered to be in remission and I'm nearly off prednisone, AKA "the best worst drug." It's all a bit confusing. Did it take long for you to get a diagnosis? Fatigue seems a constant with these diseases. I am the queen of naps.

GinnyMa profile image
GinnyMa in reply to SusanEleven

I have found helpful information here…..vasculitisfoundation.org/

It is a confusing disease and i try to understand it. I began to feel poorly in the fall and kept thinking it would get better, but when night sweats began I knew it was getting worse. Sought medical help and was diagnosed with ANCA Vasculitis. Immediately scheduled for kidney biopsy and put on a regime of infusions of Rituxima and high dose of prednisone . I am four months now into my diagnosis. It is considered a rare disease and many doctors never have a patient with it . You rheumatologist might be one of those! Be your own advocate!

SusanEleven profile image
SusanEleven in reply to GinnyMa

Thank you. I’ll check out that site.

My rheumatologist originally came to my medical center from one of the big Boston hospitals. (I live on the Northshore.) I have a lot of confidence in her and we have a good six-year relationship because of PMR.

Sigh. I finally felt my PMR was resolved. My CRP has been normal for 6 months. No more night sweats. All my aches feel clearly like my osteoarthritis. No more flares. Weaning off the last small amount of prednisone. So of course the P ANCA mpo antibodies choose now to quadruple and scare the heck out of me after sitting quietly all this time.

My rheumatologist has monitored my kidney function since the first positive P ANCA in 2017. She just set me up with a pulmonologist since I’ve had breathing … things … for many years that were labeled as this or that but never diagnosed. We’re looking for a baseline to more easily spot any changes. With that and my quarterly blood tests I hope we’ll stay ahead of anything that arises.

It’s definitely confusing. It sounds like you have good doctors who were able to diagnose you relatively quickly. I hope things go smoothly for you.

GinnyMa profile image
GinnyMa in reply to SusanEleven

If you live on the Northshore we are practically neighbors. I was diagnosed at Mt. Auburn Hospital in Cambridge. Do you know of any support groups as this is a lonely journey? When I tell people my diagnosis, they just look puzzled.

This morning I spoke with my pulmonologist (I also have bronchiectasis) and told him how I used to walk 3 miles in less than an hour and now I can barely make 1 mile. He said to keep up the 1 mile, but remember your body is very weak from the disease.

SusanEleven profile image
SusanEleven

We are not far apart! Mt. Auburn is a good hospital. I’m a patient at Beth Israel Lahey (Peabody).

I used to have trouble explaining PMR to people. Or how crushing fatigue is not comparable to “being tired.”

So far I’ve only seen virtual support groups mentioned at vasculitis foundation.org.

Westley profile image
Westley

Hello, yes it is a lonely journey with vasculitis because so few have it. I started off with vasculitis MPO but now it's ANCA. The fatigue is dreadful isn't it and the severe pains in joints. I'm in remission on methotrexate injections every week. My understanding is vasculitis can be controlled but its not a disease that can be cured

winfong profile image
winfong

Yeah, I've got extra-cranial giant cell arteritis. Literally 1 in a million worldwide. At first, I thought that was kind of interesting and unique. Now, I hate it.

Westley profile image
Westley

Hi Ginny, yes extreme fatigue is what all vasculitis sufferers have and it's like suddenly everything is too much isn't it. I live in England and was diagnosed six years ago with mpo vasculitis then changed to ANCA. I hope you get some support now otherwise with so few having it it's as you say a lonely road. All the best x

Johndeeregreen profile image
Johndeeregreen

Hang tough as others stated that fatigue as oar for this course. I’m finally getting less fatigue and amazingly returned to running 3 miles three days a week. I just completed the Peachtree road race , big 10k in Atlanta with my daughters with a descent time. I’m slower than in the past but alive and running. I had life threatening pyomiositis in November in my thigh and had surgery to save the remaining muscles. I’m a blessed man. CRP is crazy low and rheumatologist says thinks we achieved remission in a year. Nasal passages are scared and breathing is very little on one side but I’ll take it. Prednisone caused a GI fistula that I’ll have another small surgery in the fall but living with this just fine. To Colorado next week with daughter to hike high peaks. Gotta keep living.

GinnyMa profile image
GinnyMa in reply to Johndeeregreen

Thank you! You make me hopeful. Three years ago I trained to walk parts of the Camino de Santiago. I walked 3 miles daily and 5 miles on weekend. Now I am fortunate to do 1 mile per day, but am getting stronger. What a dreadful disease. We look normal, but no one understands that we are sick. I am determined to get strength back. Eating healthy and getting enough sleep are necessary. So I am on that journey to take care of myself

Twin7 profile image
Twin7

Newly diagnosed scared just starting my systemic vasculitis journey at 52 years old. Cyclophosphamide Iv drip in 2 days. Any advice? From Canada with no directions

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