Granulomatosis with Polyangiitis

Question:

What symptoms did you experience from Wegener's Granulomatosis? Submit Your Comment

Comment from: Maggie, 65-74 Male (Caregiver) Published: July 02

My husband was diagnosed with granulomatosis with polyangiitis (GPA) in November 2020 in hospital. We thought his pneumonia was related to COPD, but he is not responding to medicines and lost 20 pounds in 2 weeks. He had 4 Rituxan infusions in December, and is still on prednisone. Now so many symptoms; headaches, hoarseness, fatigue, no appetite, bloodshot eyes, and others. It just wears both of us down and is stressful.

Comment from: Ben, 55-64 Male (Patient) Published: November 26

I have had 4 relapses of Wegener's Granulomatosis and now back on prednisone and rituximab. I have been in pain for 5 years now, and it has induced the onset of fibromyalgia. My life has not been the same since, lost short term memory and get very depressed just dealing with this. Need to find a support group.

Comment from: Dianne , 75 or over Female (Patient) Published: October 14

Chest pain, shortness of breath, major fatigue, and stiff joints are my symptoms of Wegener's granulomatosis.

Comment from: JoannaB, 25-34 Female (Patient) Published: September 30

First of all I was pregnant when I was diagnosed with Wegener's granulomatosis. I had sinus issues that were persistent, and a horrible cough that progressed to what they thought was pneumonia and then thought pulmonary embolism. I had a deep tissue abscess on my left hip that was huge requiring 5 surgical debridements with wound VAC placement. I was coughing up blood and having bloody noses. I had nasal crusting that looked like tree bark the size of my thumb, coming out of my nose. I also had joint pain so bad I couldn’t walk, and ulcers in the roof of my mouth.

Comment from: poppa, 3-6 Male (Caregiver) Published: September 11

My 6 year old grandson was 4 when he started getting a persistent chesty cough, runny nose and other symptoms we now know are typical of Wegener’s granulomatosis, that baffled every doctor and specialist he was taken to. My daughter persevered and kept a daily log book of every recurrence of the symptoms he developed as doctors would only prescribe antibiotics and put it down to either a cold or chest infection each time. The symptoms were the same every time and would clear after antibiotics, and after six weeks like clockwork, the same symptoms would return, the doctor would prescribe more antibiotics and the process went on this 6 week cycle for 2 years. Finally, my daughter managed to find and see a specialist who carried out many tests and confirmed this disease. He will know today 8/9/17 what treatment he has to undergo. Lesson in this is to seek answers if you are not happy with your doctor’s prognosis. Get as much advice as possible and keep a daily log book. My daughter undertook so much research and effort to get to the bottom, it was commendable and a mother’s gut instinct that something was not right. Hopefully, my little grandson will be ok and live a full life now that we know what this thing is.

Comment from: Benji, 55-64 Male (Patient) Published: November 16

I was diagnosed with Wegener’s granulomatosis 2 years back. I am on prednisolone and azathioprine. My problem is fatigue, I have tried unsuccessfully to get information about foods that I should or shouldn't eat, and I wonder if anyone else has had this problem.

Comment from: Marisel, 35-44 Male (Caregiver) Published: October 20

Recently we lost our beloved cousin to Wegener's granulomatosis. He came to the hospital feeling unusually tired, fatigue and dark urination. Doctors did not Know what was his problem was and treated him with antibiotics, his tests showed low platelets and high white blood cells. After 3 days a rheumatologist was consulted and started testing for vasculitis since his kidney function decreased and respiration difficulties required intubation. Nothing stopped this terrible crisis from developing, and plasmapheresis was done. I wish I had known about this disease before. He was an otherwise healthy young man, whom we later knew had episodes of nose bleeding and fatigue for 2 years, but did not stop him until it was too late. Now I want everyone to know, we are so sad.

Comment from: Steely4824, 65-74 Male (Patient) Published: May 22

I have Wegener’s granulomatosis, disease, asthma, vasculitis, arthritis and no immune system. I have also lost the function of my rectum that I can hold in but cannot push out. Also I only have the right side of my diaphragm working. I generally get pneumonia 3 to 4 times a year and in December 2018 I got sepsis with my pneumonia. What's next!

Comment from: berta, 65-74 Female (Patient) Published: May 15

I just found out that I have Wegener’s granulomatosis. What a shock! The doctors were treating many things but one doctor saw something in my blood test that should not have been there. I have had two infusions and two blood transfusions I am now on oxygen so I can breathe, but we will get this thing beat. I hope anyone that has this can slow it down.

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