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Looking for any food links regarding Vasculitis - Wegeners disease

Posted by kecaj @kecaj, Mar 24, 2016

Hello – looking for any food links regarding Vasculitis – Wegners disease – it’s such a new diagnosis – and also very difficult to research – any ideas ?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

ess77 - Elizabeth | @ess77 | Aug 11, 2021
In reply to @gingerw "Thank you for asking me to comment, @colleenyoung! @siosal It sounds like a scary situation to..." + (show)
@gingerw

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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@gingerw, @colleenyoung, @becsbuddy, @siosal, and everyone

Thank you so much, Colleen. I am tomorrow having a meeting with my new rheumatologist at Mayo who's confirming this diagnosis. I'm anxious to hear what he has to say. Nephrology dx ANCA vasculitis about a month ago. I'm having lots of different issues pop up this year, added to Sarcoid, autoimmune, multiple UTI's quite sever requiring ED visits with sepsis, etc. Also, now having a difficult time with sinus infection leading to surgery in few weeks. So, this cute little diagnosis may actually be an underlying problem causing much of the other illnesses/issues. Right?

I just read this page, so am heading now to Ginger's article links to learn more.

Thank you all for this latest gift to me, from out of the blue. I Hope @siosal, you get the answers and information you need. I'm walking down the same path, it seems.
Blessings to you all.
elizabeth

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siosal | @siosal | Aug 12, 2021
In reply to @colleenyoung "Hi @siosal, I can imagine that the diagnosis of MPO ANCA vasculitis is scary. I'm tagging..." + (show)
@colleenyoung

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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1 reply
ess77 - Elizabeth | @ess77 | Aug 12, 2021
In reply to @siosal "Yes. I get the infusion and drive home. I have no awareness of any reaction. I..." + (show)
@siosal

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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@siosal, @colleenyoung, @becsbuddy et al

How often do you get the infusions? Do you notice any positive effects? Glad you're not having negative effects!
Will probably be doing the same drive, soon, different place of course. I actrually can't wait to get started;
blessings
elizabeth

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 12, 2021
In reply to @siosal "Hi all I was diagnosed with MOA, P-anca two years ago. I have been on rite..." + (show)
@siosal

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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@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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2021
In reply to @becsbuddy "@siosal How are you today? Did you get any information from the articles @gingerw posted? Colleen..." + (show)
@becsbuddy

@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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Becky, I think you might be referring to this recent AARP article:
– The Rising Toll of Autoimmune Diseases in Older People https://www.aarp.org/health/conditions-treatments/info-2021/autoimmune-diseases-rising.html

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2 replies
siosal | @siosal | Aug 12, 2021
In reply to @becsbuddy "@siosal How are you today? Did you get any information from the articles @gingerw posted? Colleen..." + (show)
@becsbuddy

@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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Becky
Good to hear from you.
My very large family including uncles aunts and cousins seem to have a cAst of characters with various often a bit mysterious autoimmune issues. I have several as does one sister. Ours are different ones. Some of
My aunts and first and second cousins have similar problems.
After reDing all the sad spouse comments i got quite a scare.
I feel fine. I used to need a nap each day. Since my second covid shot i have not needed one.

I hope you and your sister are doing well.
Thank you.

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skhollandmt | @skhollandmt | Aug 12, 2021
In reply to @colleenyoung "Becky, I think you might be referring to this recent AARP article: - The Rising Toll..." + (show)
@colleenyoung

Becky, I think you might be referring to this recent AARP article:
– The Rising Toll of Autoimmune Diseases in Older People https://www.aarp.org/health/conditions-treatments/info-2021/autoimmune-diseases-rising.html

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Great read! Thanks for sharing

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siosal | @siosal | Aug 12, 2021
In reply to @colleenyoung "Becky, I think you might be referring to this recent AARP article: - The Rising Toll..." + (show)
@colleenyoung

Becky, I think you might be referring to this recent AARP article:
– The Rising Toll of Autoimmune Diseases in Older People https://www.aarp.org/health/conditions-treatments/info-2021/autoimmune-diseases-rising.html

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Thank you for posting

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