Patient Comments: Wegener's Granulomatosis - Symptoms

Question:

What were the symptoms of your Wegner's granulomatosis? Submit Your Comment

Comment from: Debby, 55-64 Male (Caregiver) Published: October 15

My hubby was diagnosed with Wegener's granulomatosis in 12/03 after the usual symptoms showed up: nose bleeds, coughing up blood, anorexia, and weight loss. First it was lung cancer, then a proper diagnosis of Wegener's. We live on a tiny island in the Caribbean so the doctors don't know how to treat him. He managed to maintain himself with Cytoxan, prednisone and Bactrim for 13 years, all the while working full time and weekends as well. Enter a Miami rheumatologist, Rituxan every 4 months. He's still working too much.

Comment from: Tiyema, 45-54 Female (Patient) Published: June 14

I am 34 years old. In 2001 I had an abortion with 3 months pregnancy. From 2010 I started having lower abdominal pains. I've been to different gynecologists and have been advised that it is just an infection and I was given antibiotics to treat it until last year. When I advised the specialist that the pains were now becoming severe and I could not conceive, they did a laparoscopy. When the results came back, I had pelvic inflammatory disease (PID) but not sure for how long I had it because my tubes were scarred and swollen. I was given antibiotics to treat it for 2 weeks. The pains have gone and no more discharge however I still cannot conceive. I did all the necessary tests including transvaginal ultrasound and did a Pap smear, and HIV tests. The results came back negative. I just wonder why I can't conceive. Last week I visited the gynecologist again and he said I must not lose hope, and that he will refer me for pathology and they will try and bypass the tubes. I am looking for any help because I really want a child now.

Comment from: Mike's mom, 13-18 Male (Caregiver) Published: August 08

My son graduated high school, and a week later complained of ear pressure. He went to Ready Care a few days later. He was sent home with antibiotic. Several doctor appointments and 25 days from his first Ready Care visit he was admitted to the hospital, and then transferred to a bigger hospital. The doctor got him through tons of tests (tuberculosis, influenza, mold, Wegener's granulomatosis, and urine tests). He has damage to his ear, sinuses, eyes, lungs and kidneys, hoping he is healing in all places. Current treatment, he has had three doses of Cytoxan and is on 60 mg of prednisone/day (down from 120). He has old damage in his lungs from years ago, doctor thought it was asthma.

Comment from: Nicky, 45-54 Female (Patient) Published: September 07

I had been suffering from constant nose bleeds, join and muscle pain, extreme tiredness among other ailments since September 2014. But it got to the point where I collapsed in agony (April 2016) and taken to Accident and Emergency. My doctor until then treated me for my individual symptoms. The hospital suggested vasculitis and I went back to my general physician's surgery and a different GP who ordered lots of blood work and I was rushed to intensive care with acute kidney failure. I had blood transfusions and a biopsy which confined Wegner's granulomatosis (GPA). I have now had a 3 months course of chemotherapy and I am now taking a maintenance course of azathioprine, prednisolone and vitamin D. I also take myself, cod liver oil, and vitamin C. I am on a strict diet because I was left with 20 percent kidney function but I have improved that up to 40 percent which I will try to maintain. I am half way through reducing my steroids and am experiencing nasty withdrawal symptoms. I have had weight problems from losing too much to piling it on. I still have the moon face but it is going down slightly and I get some muscle pain and tiredness. My eyesight is much poorer too. I still think I am trying to get my head around this awful condition.

Comment from: God is always good, 45-54 Female (Patient) Published: January 26

It was 3 year ago I went to the doctor, I could not breathe. They put me on antibiotics, but I did not get better only worse. The next year I could not walk 1/3 of a block without stopping, my lungs were not working well and were scarred. The diagnosis was Wagner's granulomatosis. I started Rituxan infusions, had 4 once a week for a month, and they did not work. Six months later I had 3 more infusion once a week and during this time I lost my job from being so sick. They put me on azathioprine. I have all the symptoms and get worse day by day. I stay in bed most days. This disease has taken over my life, I have almost lost everything, and I will be homeless soon.

Comment from: A92C4Ragtp, 55-64 Male (Patient) Published: November 30

I was diagnosed with Wegener's granulomatosis in March 2014. My symptoms were nose bleeds, fever, fatigue, coughing and shortness of breath. I was being treated for a sinus infection by my general physician and was prescribed antibiotics. It didn't help and I was sent to get bloodwork done. Results showed acute kidney failure! I was hospitalized and given 7 plasmapheresis treatments as well as 6 IV Cytoxan treatments. I was also put on 60 mg prednisone and Bactrim. I am down to 5 mg prednisone now. I have been on 150 mg of Imuran since July 2014. I am in total remission now (thank goodness) but I take a 2 or 3 hour kip (nap) every afternoon. If my blood test numbers continue to stay where they are, my nephrologist will wean me down 50 mg every 4 to 6 weeks starting in April 2016 to 0! Can't wait! I was very fortunate that it wasn't in my lungs too.

Comment from: wendy, 35-44 Female (Patient) Published: September 01

I am 44 years old and was diagnosed with Wegner's granulomatosis in August 2013 after the family doctor noticed nose caving in and crusting nose bleeds. So tests were run and sedimentation rate was 130 and C-reactive protein was in 40s but my ANCA was negative so I was sent to ENT for biopsies. He did tests which showed vasculitis and I was sent to rheumatologist and they said it was Wegener's granulomatosis. I was put on Cytoxan, Bactrim and prednisone. I also had severe anemia and very, very low iron, almost depleted by body of all iron, sleep apnea, etc. In May 2014 counts bottomed, so I had to go to hospital for fluids. I was feeling horrible so was off medications for a couple months then started methotrexate and prednisone thinking all was going good and remission, but late that year started having some breathing issues. In March I went to pulmonologist and he blew things off. I was wheezing every other breath and he said I had to lose weight and put me on another inhaler. I was upset as I couldn't do anything for no air. I just had a second opinion from another doctor who did some surgery and, oh my goodness, it feels so good to be able to breathe after months of not being able to. New ENT went down and took tissue, gave steroid shots and a balloon to help with swelling. I did great. I so hate this disease but still have negative ANCA and now just trying to deal with it and get things done.

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Comment from: Piper, 65-74 Male (Patient) Published: March 12

In November 2007 I was diagnosed with Wegener's granulomatosis. I had gone to the Veterans Affairs hospital for a routine checkup, but I was feeling fatigued, short of breath, feverish and it hurt to walk. My doctor checked my blood work and said something wasn't right and sent me to the infectious disease center. They ran more tests and immediately checked me in to the hospital. After running various tests for a week, they determined that it was Wegener's. I initially lost about 50 lb. over a course of three weeks. I was put on a heavy dose of Cytoxan and prednisone for six months and gradually weaned of it. It affected my lungs and kidneys (now working at 40 percent). In 2008 I had open heart surgery and they were afraid of Wegener's, and it did flare up a week after surgery. I haven't had a relapse in over 5 years. The only medicine I'm on for Wegener's is lisinopril to help maintain kidney function.

Comment from: Dionne, 35-44 Female (Patient) Published: July 30

It all started in January 2014. I started feeling bad like a cold or a virus but within a few months my life was changing more than I would ever know. I think I went to the doctors 20 plus times, changed doctors and even went to the dentist. My Wegener's granulomatosis symptoms started off with fatigue, body aches, sweating and I do mean a lot of sweating! I didn't want to eat anything, then swelling in my face. It felt like someone hit me in the nose. Then my ears were infected and bright red and felt like a bee stung them. My mouth was next, I can't quite describe the pain I felt. I was miserable. I went to the emergency room (ER). At 3:30 am they gave me pain medications and sent me home. I slept for 30 hours but felt no better. Small lesions were throughout my mouth so I went to the dentist, maybe he would know something I didn't. He said go back to your doctor, I think you are having some kind of allergic reaction. So back to the doctor's but this time I went to a new doctor. He said I think you have some kind of invader hiding in your cells. What now! By this time I am coughing up blood so I am sent for a lung CT scan with dye, this proves to be my launching point. April 2014 I am sitting with my now lung specialist, being diagnosed with a disease that sounds like a joke. I have lesions in my lungs and it looks terrifying but wait, there's more; you need to now go to the hematologist (blood doctor). All my levels are bad and I need to start treatment as soon as possible or I could die. Everyone I knew said why don't you get a 2nd opinion, When you're this sick you don't really have time for a second opinion you just hope you have the right doctors. Off to the treatment I went, of course I fainted and then had a seizure, so that didn't go well but the show must go on. Two days later with Xanax (anti-anxiety) in my system I started treatment. It wasn't painful. I didn't lose my hair, in fact I have been fighting a mustache ever since. My kidneys have been affected so I have to take a blood pressure medication and I don't even have blood pressure problems! The nerve of this disease! I do feel better today and I am hopeful that things stay in this direction. I went from 60 mg of prednisone to 15 mg. The house is cleaner than it ever has been, that stuff can make you crazy so be mindful that it is temporary.

Comment from: Darek, 55-64 Male (Patient) Published: July 07

I was diagnosed with Wegener's granulomatosis in the year 2000. It started in 1999. It started as sinusitis for which my doctor gave me antibiotics. Those antibiotics worked for 3 days and the symptoms returned. MY doctor gave me another antibiotic and it cleared up. Two months later infection went to my eye (conjunctivitis) and it lasted for 3 months. After several visits to my eye doctor and different medications it disappeared. During this time I lost weight and my joints ached, and I was lethargic. Then 3 weeks later I could not breathe and my doctor put me in the hospital. After one week and many blood tests they thought I had pericarditis. Two weeks later I was diagnosed with Wegener's. Unfortunately I lost my kidneys. I got a transplant in 2005 but unfortunately it lasted only seven years. I am back on dialysis and awaiting another transplant.

Comment from: Mdwyer, 25-34 Female (Patient) Published: April 22

In April of 2010 I started having trouble breathing, I thought it was a pulled muscle from carrying my sick six year old son around Wal-Mart. A few days later it was so bad that I had to go to the doctor. He sent me for some lab work, within the hour he called me and said I needed a CT because he thought I had a blood clot. From my CT they sent me straight up to my doctor's office and he told me I had pneumonia. I had to go to his office every day for a week for shots in my butt. I was only getting sicker. He sent me to a lung doctor who put me in the hospital. I was there for a little over a week with IV steroids. I was only getting a little better. I was getting married two weeks after I got out of hospital. I continued to get sicker. They did another CT and the mass that they thought was pneumonia was growing. I then had a PET scan. That came back showing cancer. I had an open lung surgery on June 2, 2010. When I came out of surgery they said good news is it is not cancer, bad news is I do not know what it is. They did however take a portion of my lung because it had died. I went for my follow up on July 1 (my birthday) and was told that it was Wegner"s granulomatosis. I then had to start Cytoxan for three months, then a maintenance drug. It did not work and it came back, so we did the Cytoxan again for three months with another maintenance drug. And again it came back, but this time not just in my lungs, it was now in my sinuses. I then did 4 weekly doses of Rituxan and the whole time I was on between 40 and 60 mg of prednisone a day! The Rituxan lasted about a year and a half. I just finished another round of the Rituxan and have gone from 60 mgs of steroids down to 10, but I have developed more symptoms as I have gone off steroids, my ears are hurting and my vision has changed a lot, I get spots all over my body. My doctor said that I may have to do the Cytoxan again also. I am glad to say that I have not had kidney involvement, but this feeling great one day and then like you have been pulled out of the gutter the next is really getting old!

Comment from: RCA2, 55-64 Male (Patient) Published: February 24

I am awaiting the results of my blood tests now. Three doctors now suspect Wegener's granulomatosis, my nephrologist, pulmonologist and ENT, due to symptoms such as bloody nose and ears, double vision, lung disease (pulmonary embolism included), stage 3 kidney disease, night sweats, leg thrombosis, anemia (SP), sever joint pain (I thought it was my fibromyalgia), difficulty breathing and rhinitis. Previous blood tests have already revealed elevated blood cells and more. I'm trying hard not to pre-diagnose myself. But at least forewarned is forearmed.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: 45-54 Female (Patient) Published: January 30

In September of 2003 I woke up with a migraine headache. It evolved into a fever, body aches, joint pain, swollen legs and ankles, severe cramping of the calves, and bloody discharged from the nose. I was misdiagnosed with a virus, arthritis, and a sinus infection. Finally in early December I saw an arthritis doctor who diagnosed the Wegener's granulomatosis. He referred me to a kidney specialist who ordered a kidney biopsy and ANCA (antineutrophil cytoplasmic antibodies) test. After the diagnosis was confirmed, I was put on an antibiotic, prednisone and Cytoxan. After 10 months of treatment and 2 trips to the hospital for a pulmonary embolism and pneumonia, and a case of shingles, I was taken off of the medications. I am happy to report that my only lingering symptoms are occasional sinus infections and some joint stiffness. Keeping my fingers crossed for good health!

Comment from: lucky, 35-44 Female (Patient) Published: October 22

I have had Wegner's granulomatosis for 11 years. My initial symptoms were really bad. I had sinus problems, a really bad ear infection, joint pains, night sweats, and fever. The doctor said it was infection and gave me amoxicillin. I ended up in Accident and Emergency and they said I had TB (tuberculosis). After three weeks treatment my symptoms got worse. My brother told the consultant we are not happy and want to move and he decided to do one more test, Wegner's. I was straight away put on IV prednisone and cyclophosphamide for 6 months. I lost all my hair and loads of weight but got better. Year later I had a relapse and was back on chemotherapy tablets. I was on azathioprine for 9 years and my consultant stopped them. Six months later in March 2013 Wegener flare tablets were not working. I Had 2 doses of Cytoxan, 10mg prednisone and antibiotics. I am feeling better but I have sinus problems now. It is not a nice illness to have. I am also on kidney dialysis but can't have transplant due my veins not being good. I still got to live life to the max. I have good days and bad days.

Comment from: Karen, 55-64 Female (Patient) Published: October 15

I was diagnosed with Wegner's granulomatosis (WG) in 2007. It began with sores in my mouth, ear pain that doctors could find no reason for, nose bleeds, fatigue, weight gain and generally not feeling well. WG attacked my kidneys and I was on dialysis for a while. With treatment I was able to stop dialysis. My kidneys function at about 30% and will never get better. I am still on 5mg of prednisone and will be on it for life. The first year was bad and I was hospitalized for 2 weeks every month. Once I got past the hump in treatment I did very well. I have not been hospitalized even once in the last 5 1/2 years. I still occasionally have nose bleeds, but I can live with that.

Comment from: sircobra, 55-64 Female (Patient) Published: December 29

He is now seeing psychedelic signs and double vision, I am so worried that it is delayed symptom of brain injury.

Comment from: Pat-UK, Male (Patient) Published: October 28

Just to give anyone still reading a bit of hope, I became ill in 1980 when I was 20. Eventually I was admitted to hospital where I was originally diagnosed with tuberculosis. After some time on the anti-tuberculosis drugs, they found out it was Wegener's granulomatosis. After treatment with steroids, Cytoxan and prednisone for a couple of years I came off all those. I have been fine since then, I do have high blood pressure and I have been a diabetic since 1980 but at least I'm still here!

Comment from: frances o, 35-44 Female (Patient) Published: November 18

I had a sinus infection that would not go away and I had serious breathing problems because of Wegener's granulomatosis.

Comment from: LittleJohn, 55-64 Male (Patient) Published: October 08

It began with chronic sinusitis while deployed to Southeast Asia in 1991 and I continue to have this problem even today. This is despite numerous antibiotics over the years. In 2001 it appeared to have spread to my lungs and I was diagnosed with asthma. Although taking various drugs through the years it has only grown harder to breath and no lung capacity to walk or exercise and lots of coughing. I'm currently taking Pulmicort, theophylline, Singulair, and Proventil. In 2007 my pulmonologist had the huge masses that came from my nose, lab tested for bacteria among other things. It did not contain anything that alarmed him. Around this same time, he prescribed Bactrim for 7 days each month as I was running sporadic low grade fever for which there was no diagnosis. I have continued on this regimen even now as fever returns upon stopping the Bactrim. In 2008 my pulmonologist prescribed very low dose prednisone (1mg/day). Around this time I was also diagnosed with sleep apnea by sleep study, and use CPAP. In 2012 I was referred to an ENT by my general physician. After removing a large mucus mass he performed a biopsy as he suspected Wegener's, but it was not definitive. He prescribed a nasal wash solution of three antibiotics. I continued this regimen 3 times a week and he states the 'hamburger' look of my sinus has improved somewhat. Shortly after the ENT visits began, he referred me to a rheumatologist. In 2013 my rheumatologist diagnosed inflammatory arthritis, by biopsy. He increased the prednisone to 5 mg/day and introduced methotrexate and has continued to increase dosage so that now I'm on 12.5 mg 2 times per week and 8 mg/day methylprednisolone. In 2014, I was referred to a dermatologist who diagnosed me with Sweet's Syndrome, by biopsy. Recently my ENT diagnosed me with Cogan's disease. My rheumatologist and ENT suspect Wegener's granulomatosis but no definitive diagnosis has been made. My rheumatologist is planning to use rituximab in the near future.

Comment from: 400LDF, 13-18 Male (Caregiver) Published: April 01

My 16 year-old son was recently diagnosed with Wegener"s granulomatosis through a month long stay in the ICU. Lung biopsy was positive along with the ANCA and CRP and elevated ERS of 118. He recently finished a weekly routine of Rituxan infusions. He is on 40 mg of prednisone daily, Bactrim and Norco for pain. We are being referred to a pediatric pain clinic as his pain has been a big issue. His disease is in the sinuses, lungs with bleeding and nodules and questionable kidney involvement. We go to this week to see if the kidneys are now in play. Some days he can barely walk or use his hands.

Comment from: Karen, 55-64 Male (Caregiver) Published: March 19

My husband who died of Wegener"s granulomatosis back in 2012 also had 5 years prior to his diagnosis, what is called scleritis, is an inflammation in the white portion of the eye. After doing extensive research on scleritis, it is said that approximately 1/2 of cases of scleritis are associated with underlying diseases that affect the body internally, or could also manifest themselves into underlying diseases. I can"t help but wonder if Wegener"s can be caused by scleritis, since the medical professionals claim there is no known cause. I hope this might help someone out there, even though it didn"t help us.

Comment from: wegners patient, 55-64 Female (Patient) Published: November 22

I was diagnosed with Wegner's granulomatosis in March, 2013. It started with ear infection leading to joint pain. I am doing chemotherapy and steroids at present and feeling good. Early diagnosis is the key, it is not a good disease to deal with but chin up, take day by day and stay positive.

Comment from: struggling every day, 45-54 Male (Patient) Published: May 09

In 2010, I was hospitalized for apparent strokes and seizures due to brain vasculitis. I tested positive for MS, but I've also tested positive for Wegner's grannulitis (a 300 count in my blood workout and spinal puncture). My doctors said not to worry about the elevated levels. I decided to play Dr. Google with the results, only to find out about this illness. So my Neurologists don't know anything about treatments, my primary either. They both said just to ignore it. I suffer regularly with headaches, sore joints, hearing and vision issues difficulty breathing in my chest and through my nose (bloody sometimes), dark urine and bowels, abdominal cramps. They all said that it's very rare for me to have it, 1 of 30,000, so chances are in my favor it's just something else, but that still doesn't rule out the ANCA elevated levels. My disability advocate (because of my strokes) saw that I have the symptoms, and by chance, has another client with Wegner's. She said that it does go into remission, that the stroke seizure medicines and MS steroids may have cause that for now, I may be lucky. Now I need to find a treatment, I guess next is to a rheumatoid doctor.

Comment from: little fighter, 45-54 Female (Patient) Published: April 30

I started getting very blocked nose all the time and very hard to clear, feet would be sore when I got up in the mornings. Came back home after doing au-pair work, nose blocked then bleeding, went to ent thought I had polyps went to have them removed and ent noticed lining of my nose looked odd, done blood tests etc, when home got stiff and found it very hard to get out of bed, had to swing myself around to get out, and in pain. Was called back for a checkup and told I had to be admitted, there was something wrong and they did not know what. This was all in 1984 and I was only 18. Was admitted and after loads of tests discovered I had Wegeners Granulomatomis. Has done loads of damage to me first 5 years were bad, then treatment was good and I had some good years, then got a collapsed lung, still collapsed to this day. lost the cartilage in my nose, saddle nose, and only last year April 2011 had to have my right eye removed, one big hole now at the back of my nose that caused problems with my eye to turn in had severe pain from that eye and headaches at the beginning of this illness were just something else. Dreadful. That was before I knew what was wrong that I was getting these headaches. It has not got to my Kidneys yet and I hope it doesn't, but I have survived for the last 28 years with this. So that is pretty good going to say when i was diagnosed it was not that well known about at all. One of the lucky ones I guess. Or unlucky I think, because of all the damage it has done to me over the years.

Comment from: little fighter, 45-54 Female (Patient) Published: April 30

I started getting very blocked nose all the time and very hard to clear, feet would be sore when I got up in the mornings. came back home after doing au-pair work, nose blocked then bleeding, went to ent thought I had polyps went to have them removed and ent noticed lining of my nose looked odd, done blood tests etc, when home got stiff and found it very hard to get out of bed, had to swing myself around to get out, and in pain. Was called back for a checkup and told I had to be admitted, there was something wrong and they did not know what. This was all in 1984 and I was only 18. Was admitted and after loads of tests discovered I had Wegeners Granulomatomis. Has done loads of damage to me first 5 years were bad, then treatment was good and I had some good years, then got a collapsed lung, still collapsed to this day. lost the cartilage in my nose, saddle nose, and only last year April 2011 had to have my right eye removed, one big hole now at the back of my nose that caused problems with my eye to turn in had severe pain from that eye. And headaches at the beginning of this illness were just something else. Dreadful that was before I knew what was wrong that I was getting these headaches. It has not got to my Kidneys yet and I hope it doesn't, but I have survived for the last 28 years with this. So that is pretty good going to say when I was diagnosed it was not that well known about at all. One of the lucky ones I guess, or unlucky I think, because of all the damage it has done to me over the years.

Comment from: Washington Al, 55-64 Male (Caregiver) Published: March 20

Extreme headaches like none other and a month of ear aches, then blood red eyes, sinus stuffiness and stiff joints. It wasn't until a neurologist noticed the rash on my husband's ankles that she suggested it might not be a brain tumor. Diagnosed with Wagener's, went on Prednisone (60 mg) and IV Chemo for 1 year. Now on Mycophenolate (500mg) and Presnisone (5mg). Creatine levels holding at 1.4-1.6. Still extreme ear problems, 'barrel effect' where you can hear your own voice when you speak, it stinks.

Comment from: PA girl, 45-54 Female (Patient) Published: March 20

I was 24 years old when finally diagnosed. It started with what my ophthalmologist thought was conjunctivitis and ballooned from there. Achy joints, cartilage loss in my nose...I was treated with Imuran and Steroids for 5 years and remised for two years then my kidneys went dialysis and then transplant. I was tired achy grumpy and didn't feel well for years. Now 12 years post-transplant with the help of the antirejection drug Cellcept my symptoms have all but gone. The key is finding a good rheumatologist who is familiar with and deals with WG patients.

Comment from: 19-24 Female (Caregiver) Published: February 22

My daughter is 21 years old and in 2007 she was diagnosed with Wegner's. The disease took out her kidneys and we were lucky enough to have got a donor from her older brother. She is always tired, always seems to have a cold, in and out of the hospital. She seems, to me, to be under a lot of stress from people around her and I'm wondering if this stress can be a major factor in her always getting sick to the point of hospitalization. Today she went in for a checkup and they hospitalized her because of her creatinine levels and rbc and wbc and bun levels were critical. I am so worried for my daughter. She takes her medicine, tries to work out, college, works part-time, boyfriend and just seems to be extremely tired and unhealthy. I don't know what to expect or what to do except be here.

Comment from: surviver, 55-64 Female (Patient) Published: February 22

For me, I noticed that I was starting to feel more tired than usual. I then noticed a tiny lump at the bridge of my nose. Within a few weeks, my glands on both sides of my throat came up, making me think that I had an infection. However, on visiting the doctors, nothing was found to be infected. I even went to the dentist thinking it might be my teeth, or gum infection. Then came the head ache. Oh my gosh. They were so unbearable. For me I think it was worse than migraine. I could face the light. I went off food. My doctor at the time gave me antibiotics. What for I wasn't too sure. After 3 weeks of being in pain, I was admitted into hospital, where I was diagnosed with this horrible disease. That's how it affected me.

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

Approximately 6 years ago I went to my general physician for a routine exam. He requested lab tests that day and told me he would call me if things were abnormal. He called me shortly after that and requested to have additional lab tests drawn in 3 months. Lab tests were drawn and that's where the story of my Wegener's granulomatosis begins.

Comment from: concerned wife, 65-74 Female (Caregiver) Published: February 04

My husband found out he had Wegener's granulomatosis (GPA) on March 4, 2013 and he was treated but he ended up with lung cancer because of the treatments, and he passed away on October 1, 2014. He was admitted to the hospital in 2013 with not being able to breathe, then went on life support and then his kidney failed; this is a bad disease.

Comment from: Millie, 45-54 Female (Patient) Published: August 09

I started to have multiple episodes of deep vein thrombosis since 22 years ago (2nd pregnancy) and pulmonary embolism. I was placed an IV filter in my vena cava. On December 2011, I underwent a removal of blood clot surgery which after the anesthesia, I couldn't brief on my own and I was intubated, right after this intubation, I started to have multiple episodes of pneumonia, fluid in my lungs, asthma, COPD, multiple hospitalizations due to lung problems. Recently, I started to have kidney problems which I was diagnosed with Wegner's granulomatosis. I have been on prednisone therapy since 2005 due to urticaria. Please help me to understand this disease and what do I need to do to feel better.

Comment from: 45-54 Female (Patient) Published: July 09

I had flu like symptoms, which then turned into me thinking I had M.S. My legs and feet ached so bad that I couldn't get out of bed to walk. MY nose would bleed like never before. Family doc gave me meds. 4 trips to E.R. and 1 trip to ENT Doc. About 2 months of this, finally family doc sent me to a rheumatoid doctor who put me in the hospital and diagnosed me with Wegeners. I am on Steroids, and cytoxin, My kidneys took a hit. They are getting better. My left hand and foot feel numb. I am on gabapentin for that. I have blood tests once a week...I also had bleeding in my lungs..I had the cleaning of my blood done which helped my kidneys get better..

Comment from: Debbie, 45-54 Female (Caregiver) Published: June 12

In December of 2008 my husband came down with what the medical profession believed to be a sinus infection. Couple of days off work and rest lead to his not being able to walk 5 feet without struggling to breathe. Back to the doctor, this time pnemonia or so they thought. Condition continued to worsen leading to kidney failure. It was February 2009 when he was diagnosed with Wergner's, but not in time to save his kidneys. He started dialysis in May 2009. He under went 6 months of IV cytoxin treatments and was placed on steroids and immunosuppressent medications. March 1, 2010 they removed a granuloma from his left lung, having to take a piece of the lung to get it. All seemed to be going well until February of this year, 2013. He was hospitalized again with an elevated ANCA and started over on cytoxin treatments with the addition of IV rutuxin. Then in May of this year he was diagnosed with Calciphylaxis. He is currently not able to take any of the immunosuppressent medications due to open wounds on his legs and the high risk of infection. He has a wound vac on both legs and is getting the IV drug sodium thiosulfate 3 times a week. We are doing dialysis 5 times a week now and just living day by day. Wergner's they tell me is rare. Then he has colonitis (which is currently controlled) and they tell us this is rare also. Now the calciphylaxis which is even more rare in that only 1% of dialysis patients ever get this. I just wonder what if anything made him so susceptible to so many rare conditions. Anyway, my advice if you get a sinus infection that doesn't go away and you feel worse and worse keep going to doctors until you get answer and begin to feel better. I wouldn't want anyone to suffer as my husband has over the past 4 or so years.

Comment from: Doc1Psych, 55-64 Male (Patient) Published: May 02

Being a doctor myself, I was quite surprised eight years ago when I developed three bouts of pneumonia within one month's time and the skin on my forearms, legs, and face had hundreds of purple "dots" on it while I was recovering. I started having epistaxis (spontaneous bloody nose) almost daily. Blood also came from my sinuses as well when I sneezed or blew my nose. Since I studied this disease only briefly in medical school I just knew it was Wegener's because of the peculiar collection of symptoms that I presented with. Labs confirmed it. However, I want to stress that there is life during Wegener's. Rheumatologists are getting on top of this disease because it is being seen and diagnosed more often than ever before. I'm alive and in remission eight years after diagnosis, so hang in there. Help is on its way.

Comment from: Barbara, 55-64 Female (Patient) Published: April 03

I was had a skin biopsy in 2009 which confirmed vasculitis. I went to a doctor, who studied my illness with many tests to confirm I was had a skin biopsy in 2009 which confirmed vasculitis. I've been on prednisone and Azathioprine for 2 ½ years. I lost 35 pounds in two months, was always sleeping, and had night sweats. Also, I had a cranberry-colored rash from my toes to my waist, and every blood vessel came up to form an unbelievable rash under the skin. I am now in remission, off the meds, and praying I will stay in remission. I'm thankful for my doctors, who I feel saved my life. Now, I see my doctor every month for blood work. So far – great!

Comment from: PJM, Female (Patient) Published: April 03

I was tested for second time for Wegener's. I strongly suspect I do have it. I pray I get an answer even if it's not good, because my body is falling apart. I have a hole in my septum and my nose is collapsing. Three doctors thought I was abused, because my nose has a deformity I didn't have two months ago.

Comment from: Proud/concerned Dad, 25-34 Male (Caregiver) Published: March 14

My son was diagnosed with Wegener granulomatosis (WG) / granulomatosis with polyangiitis (GPA) in April 2009 at age 24, just after graduating from college and starting his first job as an electrical engineer. He's very active and fit, but had flu-like symptoms for about two weeks, then terrible stomach pain that required hospitalization. A kidney biopsy confirmed WG/GPA. After lots of medications and weeks of slow recovery, he's now doing pretty well, all things considered (no relapse yet). His kidneys only function at about 30%, but he hasn't needed dialysis. We don't know how long his kidneys will hold out. I'm very proud of him for how he's dealt with the disease and rebuilt his life, but as a father, I'm also very concerned for his future and what WG/GPA will mean for whatever time he has left. He's happy now and I want him to remain that way, so I do everything I can to stay informed on new treatment strategies.

Comment from: cincygirl, 55-64 Male (Caregiver) Published: November 19

My heart breaks for you all as I read through your stories. My father passed away in 2002, at 56, from Wegner's granulomatosis - which led to Leukemia after a bone marrow transplant. He had sinus problems as far back as I remember which he always blamed on a broken nose not set properly when he was a child. But around 1987/88 he was diagnosed with WG. He spent the next 12-14 years on/off steroids, Cytoxan, too many drugs to name. For the most part he was lucky that he didn't suffer through kidney failure or lung collapses. He remained very active although he would get winded easily. He did experience nose bleeds a lot - at times lasting 5-8 hrs it seemed. Then also his windpipe had swollen making it hard to breathe, especially with phlegm/colds. Several times he had to be rushed to the ER because he was choking on phlegm. Very scary. In the fall of 2001 he stopped producing bone marrow and had a successful transfer. Unfortunately while trying to get better he got the flu, and with his immune system so low, leukemia took over. Within 48 hours it was in 97 percent of his body. It was only a few days. Diagnosis and the right doctor is KEY!

Comment from: Mcnabbfamily, 35-44 Female (Patient) Published: September 24

I am a Wegener's survivor that is very sad to hear stories of people like me that were misdiagnosed. I have been treated with rituximab successfully and would simply like to share my experience with other Wegner's granulomatosis patients.

Comment from: Mulan1, 45-54 Female (Patient) Published: October 11

I had recurring sinus infections for almost 4 years, with nasal crusting. On my 5th sinus vacuum surgery and the 3rd ENT doctor, thought it might be Wegener's. I had fatigue so extreme that I couldn't walk across the room, terrible facial and sinus pain and general feeling of illness. After the Rituxan infusions, I believe I am starting into remission after so many years. I noticed a difference after my first Rituxan infusion, the tiredness was better, the flare ups longer in between and the sinuses sere drying up, the first time in a few years. My initial sed rate was off the charts but my ANCA's were negative and the c reactive protein was not out of line. But my Wegener's is Limited to the sinuses and ears.

Comment from: 19-24 Male (Caregiver) Published: June 17

My husband suffered recurrent sinus infections for months until we insisted on an ENT referral. The ENT was sure my husband was a chronic cocaine user (never used) because his mucus membranes were so inflamed. Biopsies revealed the Wegener's along with elevated ANCA levels.

Comment from: Leon, 55-64 Male (Patient) Published: November 19

My first experience with Wegner's granulomatosis came 4 years ago. Came home from work and felt like the onset of flu, terrible headache, coughing, no energy at all. After a week, went to ear, eyes, nose, throat doctor. After visits and several painful biopsies he sent me to Wake Forest Hospital and they pulled all test together and came up with Wegner's. After more test they put me on prednisone, and a host of other drugs. Finally, it seems to be in remission, but it flares up from time to time. Joint pains and sinus headaches mostly. Skin rash at times and coughing.

Comment from: Daisybelle, 65-74 Female (Patient) Published: November 09

I was diagnosed with kidney problems with blood and protein in the urine in large amounts. Was almost in kidney failure, but function has now improved to a reasonable level. After a renal biopsy it was confirmed that I have vasculitis. Now on steroids and chemo tablets and have noticed an improvement in kidney function, but now have difficulty and pain on swallowing.

Comment from: Alan, 55-64 Male (Patient) Published: July 12

I was finally diagnosed with Wegner's granulomatosis in 200. A kidney biopsy confirmed the condition. You need to see a Consultant Nephrologist (Renal Department). My condition is relatively under control with the occasional 'flare-up,' but is usually brought back under control within a few weeks. I am on a long list of medication, taken daily which controls the condition, however still get occasional pain, spasms, etc., which you learn to live with. I feel I am in very good hands and truly appreciative of the treatment and care I receive.

Comment from: gayle, 75 or over Female (Caregiver) Published: January 20

My 80 year old father was sick for a month with what he thought was the flu. He finally went to the doctor who did blood work, but he suffered from a stroke before he was diagnosed. It is believed that the vasculitis closed one of the arteries to his brain. He was treated with cytoxan and prednisone, and was making great progress with the rehab from the stroke he died suddenly from arterial dissection.

Comment from: surviver, 55-64 Female (Patient) Published: July 08

Unusual sneezing all the time. Very tired for no reason. Then a tiny lump came up on the right upper part of my nose. My glands in my throat were swollen for now reason. The worse part was terrific head aches. Its worse than migraine. All I wanted to do was sleep. I wasn't very hungry, considering I like my food. Doctors began treating me for hay fever. I knew it was more than that. Finally after 3 months of suffering with head aches I was admitted to a hospital, where within a couple days diagnosed me with Wegner's grandulamatosis.

Comment from: V V, 55-64 Female (Patient) Published: May 27

Joint swelling with sometimes severe pain along with a general feeling of not being well. Bloodshot eyes, ear pain then extreme fatigue till I was pretty much in bed. This all happened over a period of about 7 weeks. As soon as I was referred to a rheumatologist she sent me to several other specialists and did lots of blood and urine testing and diagnosed me in a week or so.

Comment from: Tokith, 45-54 Male (Caregiver) Published: April 20

Hubby suffered weight loss, chest pain, breathlessness and a rash on legs. Diagnosed lung cancer and lobotomy was biopsied to diagnose Wegner's.

Comment from: Marge, 55-64 Female (Patient) Published: April 12

With Wegner's granulonatosis, I had very, very severe joint pain that moved from joint to joint in a matter of days. Also great fatigue and plain not feeling well. I also had sinus problems. Finally I developed small dark red blister like bumps on my hands, feet and legs. I will say that the joint pain was around a couple of years and just got worse and worse until I could barely walk or function, but with NO swelling. I was taking 3-4 Ibuprofen every 5-6 hours just to go to work. Actually I was relieved when diagnosed, I thought I was going crazy!

Comment from: Steve, 35-44 Male (Patient) Published: August 13

I spend 27 years in remission trying to prove that I had this illness to the public. I either look like this do-gooder who wishes to report that I am cured or this person trying to cover up some other reason for his cerebritis caused by Wegner's granulomatosis. All conclude that the condition is so rare, and often described as 'incurable.' I can't report survival without discrimination. It is so much easier for someone else to conclude that it just couldn't have happened if I hadn't had treatment or there might just be another cause to my epilepsy. Seeking validation has been one of the largest fights in my life.

Comment from: The Stiff, 55-64 Male (Patient) Published: August 31

I had moving pain and swelling from joint to joint lasting 24-48 hours per location at a time. Excessive fatigue. Went to Rheumatologist and after blood tests came back with high C-Anca results. Affected my kidneys and was confirmed Wegeners through a kidney biopsy. Did the prednisone and cytoxan for several months and now on methotrexate. Currently in remission. Have bi weekly blood tests as the drugs can affect the liver. They monitor creatine levels as well.

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