Has anyone been diagnosed with Anca vasculitis GN with DAH

@bagill003 so sorry you have been through all of this.
I don’t think anyone could have an answer to your question. Have you spoken with your doctors?

Your rheumatologist might be able to give you some information about the Vasculitis and its flares. I have a different form of Vasculitis than you, but it’s all a challenging process. Same applies to fibromyalgia. I also have that. Some days I feel ok and the next day I’m not…

My experience with autoimmune diseases has been long and painful. In fact I have a new one. It’s neurological and right now I’m in lots of pain. Tomorrow morning I’m going to have to start taking prednisone again…

I hope you feel better soon. The fatigue is horrible with all of this. I understand.

@SusanEllen66 thanks for your response. My doctors couldn't answer my question, they say symptoms vary for each patient, but if I was to have a flare it would be detected early and treated, therefore not becoming life threatening as my first experience was. My doctors have been great, it's just that my symptoms came on so quickly and landed me in the hospital fighting for my life, I wonder how easily it would be to find myself back in that same situation.

I have infusions of Rituximab every 4 months which strips my immune system each time. I wonder if I got the flu, Covid, or strep.....could it mean my demise?

@bagill003 oh my goodness, you have really been going through a rough time!
In my opinion, I think you would know you are flaring immediately because you are hypersensitive to the symptoms. That’s a good thing.

You, me, and millions of other people who are taking immune suppressants are all at risk. I am careful, but I typically don’t do anything special to prevent disease.

Life is short, and I believe in God who takes care of me. He will decide when I get to go home to Him. So, I don’t worry about dying.

My dad took fairly good care of himself. Two days before his 86th birthday, he crossed the street into the path of a car and was killed!
We just never know…

@SusanEllen66 I know you are right. It's not that I fear dying, I just don't won't to miss out on my children's and grandchildren's lives. We are a very close knit family and I don't want anything to ever change that!

@bagill003 oh I really do understand that.
My daughter had 3 children. Five years ago she died unexpectedly. The kids live with dad and are doing well. However, when one of them has a birthday or graduation I feel so bad because she is missing it.
Of course, they miss her, but they keep looking forward..

@SusanEllen66 I'm so sorry about your daughter, that has to be the absolute worse thing for a mother to have to endure! I have 5 adult children and 4 grandchildren.....they and my husband are my world.

If you don't mind my asking, how long have you had vasculitis and fibromyalgia? Do you still work full time? How do you cope with those days that seem impossible to get out of bed?

@bagill003 I’m so sorry you were diagnosed with this, but I am glad that you have found good doctors. I would suggest that you go to this vasculitis website:
https://www.vasculitisfoundation.org/. They have lots of information and resources. If you google vasculitis foundation, many resources come up. Too many to list here. Some are on Facebook and some on Instagram.
Will you look this website up and come back and tell us what you learn?

@bagill003 Hi, I’m following up on @becsbuddy, who is my sister. We both have autoimmune disease but totally different, unrelated types. Mine is ANCA positive microscopic polyangiitis vasculitis that attacked my kidneys. The absolute worst thing we all share is no one seems to know what caused this nor where we go from here. My understanding is the fatigue is forever. Sad to say. If your physician recommended exercise, do it. Daily. Mine is walk 30 minutes a day. And eat a balanced diet. Have you had the opportunity to speak with a nutritionist or dietician familiar with your disease? There are a number of active Facebook support groups and I’ll see if I can find one for you. Is Anca vasculitis GN with DAH the official name or should I use another term to find a group? Be back with more information.

@bagill003 Try https://www.facebook.com/MyANCAvasculitis/. You have to have a Facebook account but do not need to be a regular active Facebook follower to be a member of this group. If it’s anything like my MPA Facebook group, you should find lots of fellow sufferes who can either commiserate, sympathize, offer advice, or all of these! Please let me know if I can provide additional information. Best wishes💕

@molly48823 Thank you. I will check it out.