Anyone Living with MPA (Microscopic Polyangiitis) Vasculitis?

Posted by bagill003 @bagill003, Jun 7, 2023

Last year following a case of COVID-19 I was hospitalized due to hemorrhaging in the lungs. I was placed in a drug induced coma because multiple organs were failing. I spent 2 weeks in ICU on a ventilator until I was stabilized. A biopsy of my kidneys verfied my diagnosis of MPA. After 7 months of rehab, I was able to return to work, but my life hasn't been the same. Within this year following my initial diagnosis of MPA, I've also been diagnosed with diabetes, osteoarthritis, and fibromyalgia. I'm still trying to adjust to the constant fatigue, shortness of breath, painful joints and general pain in my shoulders, down the backs of my legs, and swelling in my legs, feet & ankles. I have Rituxan infusions every 4 months to suppress the ANCA vasulits which strips any immune system I may have, so my question is will I have to avoid crowds for the rest of my life in order to try and avoid an infection? My granddaughter has a dance recital this month and I would love to attend, but I'm afraid I may get sick as a result. Any insight on how to live a somewhat normal life would be much appreciated.

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

I have mps p ANCA. I don’t have all your other issues. But i do have kidney involvement.

I have Aq couple of others autoimmune issues as well.

My life is normal. I still were a mask sometimes and prefer not to be in crowds.

I alway have some fear of what will come next, but it rarely rears its ugly head.

I have a great team of drs at a teaching hospital in Boston. They are my rock.

I am wishing you the best in your journey.

REPLY
@siosal

I have mps p ANCA. I don’t have all your other issues. But i do have kidney involvement.

I have Aq couple of others autoimmune issues as well.

My life is normal. I still were a mask sometimes and prefer not to be in crowds.

I alway have some fear of what will come next, but it rarely rears its ugly head.

I have a great team of drs at a teaching hospital in Boston. They are my rock.

I am wishing you the best in your journey.

Jump to this post

Hi @siosal. Thanks for your response. If I may ask, how long ago were you diagnosed? It's been a year for me and I'm still trying to wrap my head around it all.

REPLY

2015 for CKD
2017 for ANCA

REPLY

@bagill003 the beginning of the autoimmune journey can be so difficult when we feel that we need to question everything we do. My autoimmune disease leaves lesions on my brain and after 6 years, I still question myself and worry. Most people will tell you ‘rather be safe than sorry,’. But I say, ‘I have a life to live, so I can wear a mask and avoid crowds’ and still go places!
Suggest that you talk with your doctor, follow their advice, and get on with life! Can you do that?

REPLY
@becsbuddy

@bagill003 the beginning of the autoimmune journey can be so difficult when we feel that we need to question everything we do. My autoimmune disease leaves lesions on my brain and after 6 years, I still question myself and worry. Most people will tell you ‘rather be safe than sorry,’. But I say, ‘I have a life to live, so I can wear a mask and avoid crowds’ and still go places!
Suggest that you talk with your doctor, follow their advice, and get on with life! Can you do that?

Jump to this post

Thanks @becsbuddy. You're right!

REPLY
Please sign in or register to post a reply.