1. < Autoimmune Diseases

GPA granulomatosis with polyangiitis

Posted by suska @suska, Sep 15, 2017

Just diagnosed in May, 2017. On a maintenance dose of 12.5 mg. per week of methotrexate Tapering off prednisone since May also-2.5 mg every other day for 1 more week. Was feeling fine until @ two weeks ago with starting the maintenance dose of methotrexate. For two-plus days I have side effects of extreme fatigue and tiredness and some gastrointestinal problems. Also, some insomnia. Is this normal for methotrexate? Could the symptoms be related to the steroid tapering? Thank you for considering this.

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rphillips85 | @rphillips85 | Nov 26, 2018
In reply to @annao175 "Hello! I was diagnosed with GPA a year ago and I found this online support group:..." + (show)
@annao175

Hello!

I was diagnosed with GPA a year ago and I found this online support group: https://www.wegeners-granulomatosis.com/forum/. There are members the same age as your son. There are also local support groups affiliated with the Vasculitis Foundation either currently in your area or you could start one. I have found both of these to be tremendously helpful as I navigate my “new normal.”

Anna

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Thank you so much for your help. Can I ask what medications you are on?

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rphillips85 | @rphillips85 | Nov 26, 2018
In reply to @jjtaylor95 "Hi! I just turned 23, I’m from Buckeye AZ and for GPA I am on prednisone..." + (show)
@jjtaylor95

Hi! I just turned 23, I’m from Buckeye AZ and for GPA I am on prednisone and azathioprine (imuran) 150 mg. Since I was so strongly immunosuppressed when I was first diagnosed, I caught Valley Fever and it turned into valley fever meningitis which is an uncureable meningitis so I am on a lot of medication for that as well!

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My son is on Methotrexate weekly and we go in for infusions every 3 months. The doctors have him spend the night and do it in 24 house due to the risk of the meningitis.

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rphillips85 | @rphillips85 | Nov 26, 2018

are you taking the Methotrexate in pill form?

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1 reply
jjtaylor95 | @jjtaylor95 | Nov 26, 2018
In reply to @rphillips85 "are you taking the Methotrexate in pill form?" + (show)
@rphillips85

are you taking the Methotrexate in pill form?

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@rphillips85 I unfortunately had a doctor at the time who had no idea what they were doing with treatment for GPA and was put on 32 mg of Prednisone and 150 mg of Azathioprine for my original treatment which complete wiped out my immune system. Since I had no immune system, I did get valley fever meningitis which is an incurable form of meningitis. Since I have this, I can’t be on infusion as I need every ounce of immune system I can get so the meningitis doesn’t kill me. My current treatment for GPA is 10mg of prednisone (pill) and150 mg of Azathioprine (pill). If I start to go down hill again with GPA then I will get rituxan infusions but right now their main concern is the valley fever meningitis:)

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cina | @cina | Jan 5, 2019

Good Afternoon, I was diagnosed with Wegener's like the rest of the group. I went several years unsuccessful with a diagnosis until my ENT diagnosed me.When there is a flareup; I suffer with strawberry images in my mouth with severe sinus problems. I was receiving injections and a low dose of prednisone as a trail test.I lived in NC and haven't discovered a doctor well versus of this disease. Since I am living out of country, definitely doctors here aren't familiar with this disease. therefore no treatment is available. If anyone can suggest a doctor in Japan,I would greatly appreciate it.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 5, 2019

Hello @cina, welcome to Mayo Clinic Connect. I do not have Wegener's granulomatosis but I did find an article with reference to research and treatment in Japan that may be helpful.

Immunol., 36 (1) 58～61 (2013) 2013 The Japan Society for Clinical Immunology. Case report. A case of granulomatosis with polyangiitis (Wegener's granulomatosis) ... With corticosteroid and cyclophosphamide therapy, his symptoms ...
-- https://www.jstage.jst.go.jp/article/jsci/36/1/36_58/_pdf

I also found a list of hospitals and numbers in Japan (National Hospital Organization) that you can contact to find out if they provide treatment.
-- http://japaninfoswap.com/national-hospital-organization-tokyo-medical-center-tokyo/

Hopefully others may have personal experience that they can share.

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maira_bonini | @maira_bonini | Mar 12, 2019

Hello! My name is Maíra, I'm from Brazil and I was diagnosed with Wegener's in 2010 (nose and lungs).
I'd like to know if some of you or the Mayo Clinic doctors have ever seen GPA causing corneal endothelium inflammation. I've an lesion in my right eye corneal endothelium and the doctors here have never seen GPA causing this, but they say it can happen. C ANCA 1/160. Tks!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2019
In reply to @maira_bonini "Hello! My name is Maíra, I'm from Brazil and I was diagnosed with Wegener's in 2010..." + (show)
@maira_bonini

Hello! My name is Maíra, I'm from Brazil and I was diagnosed with Wegener's in 2010 (nose and lungs).
I'd like to know if some of you or the Mayo Clinic doctors have ever seen GPA causing corneal endothelium inflammation. I've an lesion in my right eye corneal endothelium and the doctors here have never seen GPA causing this, but they say it can happen. C ANCA 1/160. Tks!

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Hi Maira, I'm glad that you posted your question again in this discussion and hope some members are able to provide information for you. I found another article that has a lot of good information on eye corneal endothelium that may provide some information that helps.

ScienceDirect - Corneal Endothelium
-- https://www.sciencedirect.com/topics/neuroscience/corneal-endothelium

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purehope2022 | @purehope2022 | Jan 26, 2022
In reply to @cpierce101604q "On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis - GPA...." + (show)
@cpierce101604q

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis - GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I had numerous blood tests, CAT scans, Ultrasounds, Endoscopy, Port put in my neck and then chest for dialysis, blood clots, 2 intestinal blockages, etc. My body was a toxic mess! I had 8 Plasmapheresis, numerous dialysis, and since October 2017 I now do daily in home dialysis using my peritoneal membrane. My kidneys produce urine and that's about all they do. It appears my nephrons were damaged by the ANCA that attacked the major blood vessels in both of my kidneys. My research shows that a large part of the kidney can repair itself, but nephrons never will. I am coming up on 10 months and I am still holding onto hope that my kidneys will come back eventually. I was told I had a very aggressive form of vasculitis. I am looking for other patients that have this exact same disease to share information and hope with. I have a brother that will donate a kidney to me, but I want to use that as a last resort option. I do not like the cons of a transplant. Rejection medicine for the rest of my life for 1 example. My last creatinine check was 2.77 and my BUN is 71. So, I am still in stage 4 kidney failure.Thank you in advance for any positive or hopeful feedback.

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What are you taking to control your GPA... not just the kidney part? When diagnosed in 2018 I was seeing a hematologist because my body stopped making Red blood cells. Once the GPA was being treated 60mgs daily of Prednisone and 4 weekly infusions of Rituxan every 6 months, I didn't need any more blood transfusions to keep me alive. I did, in the process also lose my septum (GPA ate a whole right through it ... as well as my right eardrum. Now, finally in some kind of remission, I just had my eardrum reconstructed at Mayo in Jacksonville. The Reumatologists there did my diagnosis and a treatment plan--then I went home and had my ENT, Hematologist and Reumatologist look at their reports. Not one of them balked at having the research of those on the front lines of research. Once GPA is under control... it stops the destruction in its tracks. My body began making RBC's again. I lrecently learned of a woman whose hearing returned 4 years later). Best of everything to you on your journey. God bless you.
Unflatering photo of me 22 hours post-op, rocking my Van Gogh ear bandage.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 29, 2022
In reply to @purehope2022 "What are you taking to control your GPA... not just the kidney part? When diagnosed in..." + (show)
@purehope2022

What are you taking to control your GPA... not just the kidney part? When diagnosed in 2018 I was seeing a hematologist because my body stopped making Red blood cells. Once the GPA was being treated 60mgs daily of Prednisone and 4 weekly infusions of Rituxan every 6 months, I didn't need any more blood transfusions to keep me alive. I did, in the process also lose my septum (GPA ate a whole right through it ... as well as my right eardrum. Now, finally in some kind of remission, I just had my eardrum reconstructed at Mayo in Jacksonville. The Reumatologists there did my diagnosis and a treatment plan--then I went home and had my ENT, Hematologist and Reumatologist look at their reports. Not one of them balked at having the research of those on the front lines of research. Once GPA is under control... it stops the destruction in its tracks. My body began making RBC's again. I lrecently learned of a woman whose hearing returned 4 years later). Best of everything to you on your journey. God bless you.
Unflatering photo of me 22 hours post-op, rocking my Van Gogh ear bandage.

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Purehope, I love your username. And yes, you certainly are rocking the Van Gogh look. It's so helpful to see real pictures and read first-hand experiences. Yay, that you're producing red blood cells again.

How is your hearing with the newly reconstructed ear drum.

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