Looking for any food links regarding Vasculitis - Wegeners disease

Hi all
I was diagnosed with MOA, P-anca two years ago.
I have been on rite in for the whole two years. I have only had tiredness as a symptom.

The above messages are really scary to me. I had developed CKD 6 years ago. That was treated and was in remission then it didn’t work anymore which is how I ended with an additional diagnosis. I have been given many possible diagnoses over these 6 yrs. lupus. Lupus-like , MPs, wegeners , plain ANCA not given a name and most recently I have ANCA – like .

I am blessed with excellent care at a teaching hospital. Drs have group meetings where they share certain cases. I have been one since I am unusual and “very interesting”. Not what you want to hear from your Dr.

I get a moderate amount of exercise , rarely drink alcohol, and I eat healthy fresh foods – mostly vegetarian.

After my second shot of covid vaccine , and after recovering from 2 days of illness from it , I developed a bonus. I stopped being tired. No naps needed any more. Could be a coincidence. Either way I am pleased.

After reading the above I feel doomed. I am under the impression ANCA is treatable. How long you can stay on rituxin is an unanswered question.

Has anyone managed to live in a healthy fashion after this diagnosis.?

Thank you.

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Hi @siosal, I can imagine that the diagnosis of MPO ANCA vasculitis is scary. I'm tagging other members who live with ANCA vasculitis, are treated with rituxan and/or have kidney disease like @allie7764 @becsbuddy @molly48823 @3les54 @zenk @gingerw

You can read more from some of them in this discussion:
– Autoimmune mystery https://connect.mayoclinic.org/comment/282114/

Siosal, do you tolerate rituxan well?

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Thank you for asking me to comment, @colleenyoung!

@siosal It sounds like a scary situation to be in, but knowledge will give you power, and understanding! Here is an article you may find interesting https://ancavasculitisnews.com/anca-vasculitis-symptoms/ I have kidney disease, do not have vasculitis.
Ginger

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Hi @siosal, I can imagine that the diagnosis of MPO ANCA vasculitis is scary. I'm tagging other members who live with ANCA vasculitis, are treated with rituxan and/or have kidney disease like @allie7764 @becsbuddy @molly48823 @3les54 @zenk @gingerw

You can read more from some of them in this discussion:
– Autoimmune mystery https://connect.mayoclinic.org/comment/282114/

Siosal, do you tolerate rituxan well?

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Yes. I get the infusion and drive home.
I have no awareness of any reaction.
I am very careful about where i go and who i am with bec although i feel fine, my natural immune responses are pretty limited.

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Hi all
I was diagnosed with MOA, P-anca two years ago.
I have been on rite in for the whole two years. I have only had tiredness as a symptom.

The above messages are really scary to me. I had developed CKD 6 years ago. That was treated and was in remission then it didn’t work anymore which is how I ended with an additional diagnosis. I have been given many possible diagnoses over these 6 yrs. lupus. Lupus-like , MPs, wegeners , plain ANCA not given a name and most recently I have ANCA – like .

I am blessed with excellent care at a teaching hospital. Drs have group meetings where they share certain cases. I have been one since I am unusual and “very interesting”. Not what you want to hear from your Dr.

I get a moderate amount of exercise , rarely drink alcohol, and I eat healthy fresh foods – mostly vegetarian.

After my second shot of covid vaccine , and after recovering from 2 days of illness from it , I developed a bonus. I stopped being tired. No naps needed any more. Could be a coincidence. Either way I am pleased.

After reading the above I feel doomed. I am under the impression ANCA is treatable. How long you can stay on rituxin is an unanswered question.

Has anyone managed to live in a healthy fashion after this diagnosis.?

Thank you.

Jump to this post

@siosal How are you today? Did you get any information from the articles @gingerw posted? Colleen asked me to join the conversation. I don’t have ANCA but my sister does. She was diagnosed about 5 yrs ago and is doing very well. I think she had rituxan infusions. I have a different autoimmune disease, but i also had rituxan. It was given as 2 doses twice a year. Unfortunately for me, it quit working after the 3rd cycle. I then had 6 cycles of cyclophosphamide which put me into remission. Now the doctor is trying an oral drug that will keep me in remission.
If you are old enough to get the AARP magazine, there is a wonderful article about autoimmune diseases. I haven’t been able to access the article online so cant provide a link. I’ll keep trying.
I know you’ll be okay, just keep taking care of yourself (think Covid), and rest even when you don’t want to.

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@siosal How are you today? Did you get any information from the articles @gingerw posted? Colleen asked me to join the conversation. I don’t have ANCA but my sister does. She was diagnosed about 5 yrs ago and is doing very well. I think she had rituxan infusions. I have a different autoimmune disease, but i also had rituxan. It was given as 2 doses twice a year. Unfortunately for me, it quit working after the 3rd cycle. I then had 6 cycles of cyclophosphamide which put me into remission. Now the doctor is trying an oral drug that will keep me in remission.
If you are old enough to get the AARP magazine, there is a wonderful article about autoimmune diseases. I haven’t been able to access the article online so cant provide a link. I’ll keep trying.
I know you’ll be okay, just keep taking care of yourself (think Covid), and rest even when you don’t want to.

Jump to this post