Patient Comments: Wegener's Granulomatosis - Treatment

Question:

What was the treatment for Wegener's granulomatosis in you, a friend, or relative? Submit Your Comment

Comment from: PeeWee Longway, 25-34 Male (Caregiver) Published: July 11

My 23 year old son was diagnosed in October of 2015, with the Wegener's granulomatosis in his sinuses and kidneys. After 5 days in the hospital he had a biopsy test of the kidney which diagnosed the vasculitis with GPA (granulomatosis with polyangiitis). He was then treated with 80 mg of prednisone which stopped his kidneys from failing and 4 weeks of rituximab, and Imuran for the next two years. Now two years later after doing well he's back into the hospital with severe optic nerve swelling and the wrong team of doctors.

Comment from: SB, 65-74 Female (Caregiver) Published: July 17

My mom has Wegener's granulomatosis. She was diagnosed 7 years ago after 2 months of symptoms that went from mild fever and aches and pains to kidney issues. She is on a maintenance treatment of Rituxan every 6 months, and it seems to be helping. She has arthritis and fatigue that she has never had before, but the doctors believe this is a good treatment. Our wishes go out to all of you who are struggling with this. You are not alone. Good luck.

Comment from: Alice, 35-44 Female (Caregiver) Published: October 21

My sister was not diagnosed early, because doctors did not find the cause of her symptoms. Consequently, her kidneys failed first, then her lungs and finally she died in a week. If doctors had known she suffered from Wegener's granulomatosis disease, she would be alive now.

Comment from: SS, 65-74 Female (Caregiver) Published: July 14

My family member was ill for over a month before she was diagnosed with Wegener's granulomatosis. They tried cyclophosphamide, (I think that's what it was) but she had a bad reaction, so they put her on rituximab. She has been doing well with preventative Rituxan treatments every 6 months. After all that I've read, I feel this may be the best treatment available for this illness. I hope this helps you. Best wishes to all of you.

Comment from: escape1965, 65-74 Female (Patient) Published: June 30

For Wegener's granulomatosis prednisone, Cytoxan, and mycophenolate were the treatment for the disease process and then many other medicines to care for the collateral damage, i.e., all body systems were affected.

Comment from: cocopuff, 55-64 Male (Caregiver) Published: November 06

My husband was diagnosed with Wegener's granulomatosis in April 2015 while we were on vacation. He spent two weeks on a ventilator and another two getting him well enough to fly home. His kidney doctor was concerned about the side effects of his drugs and weaned him from them. He had two good weeks before he relapsed and had to be readmitted to hospital in mid-July. They put him into ICU on ventilator for a month. He died on August 15.

Comment from: JudyF, 65-74 Female (Patient) Published: February 24

I was diagnosed with Wegener's granulomatosis (WG) in 1999 and put on the standard cortisone/chemotherapy treatment which did very little. My doctors were getting very worried when a medical professor friend of ours found an article in a British medical journal about a monoclonal antibody treatment which was being trialed in Cambridge for recalcitrant cases of WG. We went to Cambridge and I received the treatment and have had no symptoms ever since. I am on no medication and don't have to see my specialists at all. I can't understand why this treatment isn't more widely used.

Comment from: worriedwife, 25-34 Female (Caregiver) Published: June 25

My husband was diagnosed with Wegener's granulomatosis almost 6 years ago. It started with headaches, legs cramps, and red spots all over his legs. He started to get crusting in his nose before he was hospitalized for 3 months dialysis for failed kidneys. The rheumatoid arthritis doctor put him on Cytoxan for 3 years. He went into remission. Well, lo and behold, his disease has reared its ugly head again. He is getting the vasculitis again. The doctor will not put him on Cytoxan anymore. We are attempting Rituxan to see if it will help again.

Comment from: Mucjud13, 55-64 Female (Patient) Published: June 02

Update on my treatment for Wegener"s granulomatosis: the Imuran after several months spiked my liver enzymes to 88! My rheumatologist called and I was to stop immediately my 150 mg a day. About 5 weeks later, I was switched to Rituxan Infusions. All this happened recently between February 2014 and present May 2014.

Comment from: K M, 55-64 Male (Patient) Published: April 11

I was diagnosed in 2005 with Wegener"s granulomatosis after multiple sinus infections, fevers and sickness. Doctors kept giving me antibiotics but I kept getting sicker. I was on Cytoxan and 100 mg prednisone for a year which caused necrosis of my hip. I had a hip replacement. Also, now I have severe peripheral neuropathy. I felt better but remission did not last and I ended up in hospital for Rituxan infusions. My mental capacity has been affected, as well as my stamina. The doctor wants to repeat Rituxan treatments again. I really don"t want to, but as I felt better and tried to do more daily, I am now having bloody discharge from sinuses again. It"s been a battle with ups and downs. I am grateful for the days I do feel pretty good.

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Comment from: Hailee, 25-34 Female (Caregiver) Published: March 14

My uncle had Wegener"s granulomatosis disease when I was 5. While I was right next to him he died from it because they didn"t have a cure. I"m 13 now and writing a report about Wegener"s disease.

Comment from: Marsha, 19-24 Male (Caregiver) Published: February 28

My son was diagnosed with Wegener's granulomatosis when he was 15 years old. He suffered from sinus problems and severe joint pain and fatigue that made it impossible for him to go to school or even put his clothes on. He was very athletic before this happened and was devastated. It took the doctors 6 months before he was diagnosed. The ENT doctor did a biopsy on him and confirmed Wegener's. He is now 19 and over the past 4 years has had lung and kidney affected and narrowing of the airway. He has had 5 surgeries in the past 2 years to keep his airway open. They have tried every drug there is to treat Wegener's. He went about a year in remission, but has started to have joint pain again and had 2 surgeries in 4 months for throat dilation. It is very hard to see my son suffer with this disease, it just doesn't seem fair. Right now he is on 60mg prednisone and 2000 CellCept daily.

Comment from: alive 2014, 55-64 Female (Patient) Published: January 08

In the summer of 2012 I developed all the symptoms of WG (Wegener's granulomatosis) within a 4 week period. After being treated for the various infections, "blood spots" appeared on my fingers and feet. My general physician sent me for a chest x-ray and CT scan, and made an appointment with a rheumatologist that was familiar with WG. By September I was being treated with Rituxan, steroids, and Bactrim. I had to have a second round of Rituxan in Feb. 2013, and have been in remission since then. I am grateful for an early diagnosis.

Comment from: Marco, 75 or over Male (Caregiver) Published: January 03

My mother had relatively few symptoms, except for loss of appetite and weight loss for about 2 to 3 months. She was also dizzy but that was attributed to her blood pressure medication making her pressure too low. Her doctor did blood work and sent her to a nephrologist saying she was in renal failure. She was diagnosed with Wegener's; had plasmapheresis and 2 treatments of Cytoxan so far, and is still on high dose of steroids. She seems a little better but she is still very weak, and is experiencing short term memory loss and some confusion. She's scheduled to see a neurologist in 2 weeks.

Comment from: jro, 13-18 Female (Caregiver) Published: January 02

My daughter at fourteen was diagnosed with Wegener's granulomatosis two months after exhibiting symptoms. Her symptoms were, ear infection, nose bleeds, night sweats, joint pains with no swelling and reddish purple rash, that was not raised, on her feet and hands and red bloodshot eyes. She is now being treated through children's memorial hospital and has had 4 doses of IV rituximab with prednisone to hopefully put this in remission.

Comment from: Normskeeper, 55-64 (Patient) Published: August 20

My symptoms now appear as typical to Wegener's: extreme night sweats, unable to walk due to unbearable joint pain, and constant pain behind the left eye. I made many trips to the ER, ENT, GP, cardiologist, rheumatologist, psychiatrist, and nephrologist, who finally looked at my readings and said I would not survive another eight hours. I had left work to make the consultation and ended up on Mother's Day with the diagnosis following a kidney biopsy. From the onset of problems to diagnosis, it was seven months, four biopsies, and 17 different and powerful medications. I joked about my "Hello Kitty" face due to the extraordinary amounts of prednisone, weathered the Cytoxan, and lost my hair in the process (not a bad thing). I spent five months off and on in the hospital with kidney failure and six years into this I am healthy, active, working, and enjoying every moment. I had cataract surgery two years ago following the ravages of prednisone, which was very successful. I am grateful there were finally answers, excellent doctors who supported and believed in me, and family and friends who carried me. I always believed I was "safe" and still do after two flares. I remain on Imuran to this day. I am a firm believer if you are given the diagnosis and tools available to fight, you are empowered to act. I am most fortunate and wish others health and strength once diagnosed.

Comment from: survivor2013, 25-34 Female (Patient) Published: June 10

I was diagnosed in 2010 when mine started like a sinus infection and then i had kidney failure and was on dialysis for almost 3 months and then my kidneys started back. Thank God. I am still taking prednisone and Imuran. I have had 14 surgery's in the last 3 years and still have trouble with my bladder and have to have another surgery on my bladder.I am a survivor and a fighter and I will continue to do cause I have 2 kids to live for so it is going on 3 years now since I was diagnosed but I feel fine and I have good days and bad days but I believe in God and I have handed this wegners over to him.

Comment from: pbyoung1, Female (Patient) Published: April 08

I was first diagnosed with Wegener's in 2001. I had fevers, weight loss, and coughed up blood. I was fortunate enough to get to a pulmonary doctor who had one other patient with the disease. I was treated with Cytoxain and prednisone, and went into remission after a year. It came back three years later, and was treated the same way for two years. I stopped taking medications in 2006. Now, though I feel fine and have no symptoms, I have an elevated ANCA result. This has been going on for almost a year. I feel great; have no symptoms – but a high ANCA. Is there anyone else out there with this problem?

QUESTION

The term arthritis refers to stiffness in the joints. See Answer

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