Yes, we MUST advocate for ourselves. I honestly believe the only reason I got the right diagnosis after 9 months was because the nephrologist pulled in for consult had researched ANCA at Duke. He had biopsy of my kidney sent to Arkansas for confirmation. The mistake I made is only having solumedrol drip 3 days with oral prednisone, and then choosing Rituxamab inside of Cytotoxan for my first infusion. All the docs except the nephrologist said that Rituxamab was the best treatment. Should have used Cytoxan as I had a major flare in less than a week and that's when most of the organ damage was done. Then had 3 more days solumedrol, Cytoxan infusion, 4 units blood, 7 plasma exchanges, and another Rituxamab infusion before coming home 2 weeks later. I hope we both improve with the right treatments. I am taking Tavneos (avacopan) 30mg 2x daily and lots of other things. Have had Rituxamab 2x since hospital release and am scheduled again in December. Thankful for an appt in Sept at Mayo, Jax. Looking to live the best quality life I can. God bless you.
I too have been blessed with an amazing medical team. The Team lead and rheumatologist that goes above and beyond more than any medical provider I have ever had. Dr. Ishizawar has just been amazing. She is part of my team at UNC Chapel Hill. I am also followed by, ENT, general surgery, hepatolagist, GI, hematology ophthalmologist, endocrinologist and cardiology. And psychiatry
If it weren’t for going to numerous doctors visits I might have some free time.
Yes, we MUST advocate for ourselves. I honestly believe the only reason I got the right diagnosis after 9 months was because the nephrologist pulled in for consult had researched ANCA at Duke. He had biopsy of my kidney sent to Arkansas for confirmation. The mistake I made is only having solumedrol drip 3 days with oral prednisone, and then choosing Rituxamab inside of Cytotoxan for my first infusion. All the docs except the nephrologist said that Rituxamab was the best treatment. Should have used Cytoxan as I had a major flare in less than a week and that's when most of the organ damage was done. Then had 3 more days solumedrol, Cytoxan infusion, 4 units blood, 7 plasma exchanges, and another Rituxamab infusion before coming home 2 weeks later. I hope we both improve with the right treatments. I am taking Tavneos (avacopan) 30mg 2x daily and lots of other things. Have had Rituxamab 2x since hospital release and am scheduled again in December. Thankful for an appt in Sept at Mayo, Jax. Looking to live the best quality life I can. God bless you.
So sorry you have been sick for so long. So, you are ANCA negative and I am ANCA positive. Mine has attacked the vessels in my ears, sinuses, eyes, lungs, and kidneys. I am taking Tavneos (avacopan) 2x daily and my numbers are looking better, but I have read that you must consider symptoms also when deciding if the disease has gone into remission. I am praying for no major flare again. Not sure my body could tolerate it. But in that light, I am trying to live the best life I can. Blessings to you.
Thank you. I will take all the blessings I can get. In spite of being sick for a very long time, up until October I was working full time as a Physician Assistant in a very busy urgent care and doing pre-anesthesia testing at the local hospital. In October I got C-diff colitis secondary to antibiotics being prescribed for chronic recurrent UTI. It all went down hill from there. I ended up with a ruptured bowel, that was not healing properly due to recent high dose prednisone. It was followed by 6 abdominal surgeries in a 12 day period. I spent many weeks in ICU total time in the acute care hospital was 2 months then I went to an acute care long term rehab for two months. At the end of December I was so weak I was not able to walk, I was receiving IV nutrition because I could barely eat. I finally was discharged the end of Feb. I went home with walker, wheelchair, and 18 hours a day of IV nutrition. Fast forward to today. I went to the YMCA this morning and worked out in the pool for one hour. I still have not returned to work and was denied disability. I am fighting that, just playing the waiting game now.
My hearing is such that I am receiving hearing aids on Wednesday. But I feel so blessed to be walking and talking on this earth right now.
Yes, we MUST advocate for ourselves. I honestly believe the only reason I got the right diagnosis after 9 months was because the nephrologist pulled in for consult had researched ANCA at Duke. He had biopsy of my kidney sent to Arkansas for confirmation. The mistake I made is only having solumedrol drip 3 days with oral prednisone, and then choosing Rituxamab inside of Cytotoxan for my first infusion. All the docs except the nephrologist said that Rituxamab was the best treatment. Should have used Cytoxan as I had a major flare in less than a week and that's when most of the organ damage was done. Then had 3 more days solumedrol, Cytoxan infusion, 4 units blood, 7 plasma exchanges, and another Rituxamab infusion before coming home 2 weeks later. I hope we both improve with the right treatments. I am taking Tavneos (avacopan) 30mg 2x daily and lots of other things. Have had Rituxamab 2x since hospital release and am scheduled again in December. Thankful for an appt in Sept at Mayo, Jax. Looking to live the best quality life I can. God bless you.
Thank you. I will take all the blessings I can get. In spite of being sick for a very long time, up until October I was working full time as a Physician Assistant in a very busy urgent care and doing pre-anesthesia testing at the local hospital. In October I got C-diff colitis secondary to antibiotics being prescribed for chronic recurrent UTI. It all went down hill from there. I ended up with a ruptured bowel, that was not healing properly due to recent high dose prednisone. It was followed by 6 abdominal surgeries in a 12 day period. I spent many weeks in ICU total time in the acute care hospital was 2 months then I went to an acute care long term rehab for two months. At the end of December I was so weak I was not able to walk, I was receiving IV nutrition because I could barely eat. I finally was discharged the end of Feb. I went home with walker, wheelchair, and 18 hours a day of IV nutrition. Fast forward to today. I went to the YMCA this morning and worked out in the pool for one hour. I still have not returned to work and was denied disability. I am fighting that, just playing the waiting game now.
My hearing is such that I am receiving hearing aids on Wednesday. But I feel so blessed to be walking and talking on this earth right now.
Goodness! I am down to very low prednisone daily now (2.5mg) after large doses for several months. The Tavneos has helped me move off the prednisone by keeping my B cells "in line". Earlier before diagnosis, but after illness (April 2024), I was diagnosed with 2 bleeding gastric ulcers and diverticulosis - had NEVER had problems before and this was before prednisone treatment. Kept telling medical team that this all was part of a big picture. (And it was.) But it sounds you are fortunate to be alive and LOOK AT YOU - out exercising. Goooo! It really is hard to understand how some people get on disability so easily while others are denied time and again! Hope that will be sorted out as it certainly sounds like you deserve it. Keep up the healing!!!
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I too have been blessed with an amazing medical team. The Team lead and rheumatologist that goes above and beyond more than any medical provider I have ever had. Dr. Ishizawar has just been amazing. She is part of my team at UNC Chapel Hill. I am also followed by, ENT, general surgery, hepatolagist, GI, hematology ophthalmologist, endocrinologist and cardiology. And psychiatry
If it weren’t for going to numerous doctors visits I might have some free time.
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3 ReactionsBest of luck to you. What a journey.
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2 ReactionsThank you. I will take all the blessings I can get. In spite of being sick for a very long time, up until October I was working full time as a Physician Assistant in a very busy urgent care and doing pre-anesthesia testing at the local hospital. In October I got C-diff colitis secondary to antibiotics being prescribed for chronic recurrent UTI. It all went down hill from there. I ended up with a ruptured bowel, that was not healing properly due to recent high dose prednisone. It was followed by 6 abdominal surgeries in a 12 day period. I spent many weeks in ICU total time in the acute care hospital was 2 months then I went to an acute care long term rehab for two months. At the end of December I was so weak I was not able to walk, I was receiving IV nutrition because I could barely eat. I finally was discharged the end of Feb. I went home with walker, wheelchair, and 18 hours a day of IV nutrition. Fast forward to today. I went to the YMCA this morning and worked out in the pool for one hour. I still have not returned to work and was denied disability. I am fighting that, just playing the waiting game now.
My hearing is such that I am receiving hearing aids on Wednesday. But I feel so blessed to be walking and talking on this earth right now.
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2 Reactions@melodyanne I was diagnosed in 2015. It appears to be gone now…
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1 ReactionThat is wonderful!!! I hope it stays GONE! God bless you!
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2 ReactionsMy 55 year old son has ANCA. I am sorry for you and your family. Sending prayers
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2 ReactionsDid you take any special medications or any particular diet?
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1 Reaction@melodyanne I took prednisone for 8 months.
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2 ReactionsGoodness! I am down to very low prednisone daily now (2.5mg) after large doses for several months. The Tavneos has helped me move off the prednisone by keeping my B cells "in line". Earlier before diagnosis, but after illness (April 2024), I was diagnosed with 2 bleeding gastric ulcers and diverticulosis - had NEVER had problems before and this was before prednisone treatment. Kept telling medical team that this all was part of a big picture. (And it was.) But it sounds you are fortunate to be alive and LOOK AT YOU - out exercising. Goooo! It really is hard to understand how some people get on disability so easily while others are denied time and again! Hope that will be sorted out as it certainly sounds like you deserve it. Keep up the healing!!!
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3 ReactionsHow fortunate for you! Blessings! I have been on a battery of meds (prednisone included) but this devil is being rather stubborn! Prayers appreciated.
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