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Vasculitis UK
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Wegener's Granulomatosis with polyanginitis

Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lot of destruction to my sinus cavity, my nose and my eyes have scarred to the point that my tear ducts don't work. As of last year, all of the above issues were controlled by tubes in my eyes, nose reconstruction surgery X3, and sinus cleanings monthly. But now, too much damage. More going on, but will continue later. Heading into the pain Dr now.... Blessings to you all

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Sorry you have so many problems .. are you here in the UK?

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Thank you :-) No, I am not in the UK...I am in the US. I have been searching endlessly for any information about a problem I am having with my lungs. Since I have had this illness for 28 years, I have a very long medical history. In 1990, my mother took me to the emergency room hospital, because I had been so sick, and at the point when I was unable to walk, all my joints were inflamed, my shoulders, elbows, wrists, hips, knees, ankles, and my muscles were so painful, all I could do was crawl if I had to go to the bathroom, and my fingers throbbed with pain, I could not even button a button!! I had vascular spots covering my legs, some as large as quarters! They were soft, and the looks of them terrified me!! It all happened so gradually.....but then, the spots, pain, and inflammation suddenly happened in a couple of days....my mother felt terrible that she had not taken me sooner!! But it was all so strange! So at the hospital, I had Xrays, CT scans, MRI scans. They found tumors in my lungs, granulomas in my nose, and red blood cells in my urine. After biopsies, and labwork, I was diagnosed with Wegeners Granulomatosis. Very Rare at the time, so I was a very interesting specimen to many doctors!! I was treated with 80mgs of prednisone, and an oral chemotherapy medicine called Cytoxan. I became much better within 2 weeks, and after 3 months I was able to start reducing the meds. The tumors in my lungs shrunk up to little spots of scar tissue. My nose stopped bleeding, and my ears stopped aching, and my ear infections cleared up. But now, after 28 years, I have been through many different treatments, several surgeries, many just to put tubes in my eyes, or ears. I have osteoporosis, I just learned. But my main concern is my lungs. 2 years ago I began having a lot of problems breathing, and my lungs have scar tissue and the doctors really do not know exactly what else they are seeing....not cancer, not tumors, but as long as it remains unchanged every 6 month CT scan, they are just treating me for asthma. But since these changes in my lungs, I cannot endure doing the things I love to do, like gardening, hiking, or even cleaning my house. If I start doing something for any length of time (10-15minutes), I become sweaty, trembling, nauseas, and will occasionally actually throw up. Its like having heatstroke by cleaning my kitchen!! It is maddening!!!! Doctors are trying to figure it out, but at this point, there is always something else happening to my health, and it has to be treated first! (I got blood clots in my legs, went to my lung last year!--just one example) So I am 51 years old, and I think my internal body is about 71!! HaHa!! Its a real hardship for my doctors. They are all wonderful, and very competent. But this crazy disease makes things very difficult to keep up with all the issues happening in my body. I don't look sick.....which is amazing! Sorry for the long story....but unfortunately, this is only some of what is going on. I am used to my life, I am used to the daily issues, and have learned to enjoy my life as it is now. I feel very fortunate to have a great support system from my family. I did lose my husband by divorce...he could not deal with my life changes and we divorced after being married for 20 years. But overall, I am doing well. I am looking forward to learning a lot from the wonderful people here. Thank you....Blessings to all, Lilly

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Hi Lilly, I too have Wegeners in the sinus's. I'm from the US also and find this site very helpful. I initially had RA and was having lots of sinus issues. I went to Boston for a second opinion and the blood test came out borderline ANCA Wegeners. Started Rituxan in June. My second round is in December. Last year I had nasal polyps removed and a mass that they located that was benign. Learning to find ways in dealing with it. I was on prednisone for 2 years for the RA, now I'm off it struggling to get the weight off.

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My husband was on 60mg of Prednisone for a year and a half to two years. He has put on quite a bit of weight (ok, we both have from lack of activities due to his limitations) and has cataracts and now needs glasses caused from the Prednisone. He still has sinus issues but never had polyps. I'd be interested to learn more about your experience with this condition, if you'd be willing to share. We are in the US also.

Carrie

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Hi Carrie, I just read this post from you, after I wrote to you below. But I am surprised that your husband was on that high dose of prednisone for so long!! My doctors seemed to want to use it sparingly because its destructive and dangerous long term side effects. But it may have to do with the other medical issues he has with the wegeners. I'm not criticizing at all, I have been on prednisone since I became ill in 1990. My wegeners seems to flare if I'm taken off completely. I am on 5mg daily, and my dr will go up on it if I get labwork and symptoms of inflammation. And Oh, the weight!! That's one of the worst things about that little pill!!!! The wonderful round moon face and uncontrollable appetite!!! I have almost reached my goal weight loss that I acquired from last years flare. I decided to stop eating processed sugar, off the diet coke, and tried to eat healthy....and it works! I lost 25lbs. and I'm at a steady 140. Thanksgiving has given me my sweet tooth back, so I'm struggling again with the icecream and sweets. Sugar in fruits is fine, but processed is so bad for you. Try to get moving too. I was sedentary with my last flare, and I cracked a bone in my foot (thanks prednisone for osteoporosis) and I had to keep my foot elevated. But because I was so sedentary, I got blood clots in my leg and lung. That's just one more issue I deal with along with all the other stuff that you know about. Sorry, I talk a lot.....Take care, Blessings, Lilly

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So sorry about you fighting 2 terrible diseases. I have had some Rituxan infusions the past few years, anytime I start to flare. But my wegeners never truly goes into remission. But having it on top of RA, I am so sorry. Well my nose has a history all its own! That's where wegeners hit me first, sinuses and ears. I have had many sinus surgeries, some to remove things like you. But along the years, my nose broke down into saddle nose. And a Dr. at the University of Birmingham, wanted to try and fix it. So I had reconstructive surgery twice. Beautiful at first, but they don't last very long, after a year or so, nothing has been able to withstand the disease. Wegeners has slowly destroyed all the insides of my nose. Its just an open area, and I have to clean it almost daily with saline spray and q-tips. I have done this for years. I also go about once every 2-3 months for my EENT to clean the back parts that hinder my breathing. It has finally totally taken all my taste and smell away. It was off and on for years, but now all gone. But you learn to taste in very different ways....strange but true!! The only way I can lose weight is to stop eating processed sugar, and eat smaller portions. That's it. I've tried everything, but that's the only way I can get the weight off. Its a struggle, as is almost everything for us, right? Take care, Blessings....Lilly

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I had all kinds of problem in 2010 and 2011 until diagnose did ruxiumb treatment been in remission but now anca test showed positive 2 weeks ago, now have hole in nose. I am in us also and Drs are not good. I just changed Drs and she knows more than last one

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Lilly, we are also in the US. My husband was diagnosed with granulomatosis with polyangiitis, acute glomerulonephritis, mononeuritis multiplex, and polyneuropathy.

He was diagnosed at 34 in July 2014 and only became sick/beginning symptoms in late 2013. Are you aware of any charities in the US for this condition? This disease is so difficult to diagnose as my husband was misdiagnosed three times before he was hospitalized the first time. So many with this condition can have so many different symptoms and varying degree of those symptoms. I'd like to bring more awareness to this condition and hopefully find a chat/community that my husband might be interested in in becoming a part of, mostly for understanding. This condition can be so frustrating, as I've watched first hand.

All the best,

Carrie

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Hi Carrie, This is such a frustrating illness, and I have felt the pain of not only having it, but also dealing with everything that comes with it. I have a lot of friends on a website I found a few years ago, and it has people from all over the would with wegeners dz. It has been a great resource of information, and LOTS of support!! Some of the friends I have from there are also my facebook friends, and you may already know, there are so many support groups on fb for wegeners, and people who also have other autoimmune illnesses. I am a "part time" facebook person. I'm not on it every day, but I do check in a lot, and see what great information some of my weggie friends, have posted. Then also, a lot of weggies are members of other sites, like "chronic pain", and there are charities that we fall into, like "Invisible Illnesses". But when I have a question about a symptom I'm having, or wanting moral support, the website I mentioned in the beginning is

wegeners-granulomatosis.com...

I hope you find it as interesting, and helpful as I have over the years. Blessings to you and your husband, Lilly

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Hi, I'm in Vancouver Canada and was diagnosed with GPA in 2014. Almost lost my life before diagnosis. There are some support groups in Canada, but none in Vancouver. Awareness and recognition of autoimmune Vasculitis diseases is very low here, and you are lucky if you get to a doctor who tests for it early before your condition becomes critical. Good efforts to spread awareness of Vasculitis are revving up in the UK, and I have found links to the latest research and developing meds through their support groups. Check out Vasculitis UK.

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Sorry to hear of all what you are going through. Fingers cross improvement is on the way. Regards lorraine

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Hi lilly sorry to hear of your issues i was diagnosed with same illness in November 2015 so far had one relapse and i have Stage 3/4 CKD but apart from that doing ok on Rituximab. my sinus seem ok but have to have nasal wash at home on regular basis.Hope things go ok for you.

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Hi Keith, Thank you for your note. I am from the US, and am learning some of the words and acronyms you all use, but I am not familiar with what CKD is.....I feel silly asking what it means. But I am interested in what it is you are dealing with. So, what is Stage 3/4 CKD?

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Hi lilli sorry Stage 3/4 CKD is actually Chronic Kidney Disorder and the Vasculitis did the damage to me and left me at stage 3/4 which leaves me with smething like 30 to 40 percent kidney function but this varies but doesnt get any higher than about 42% hope this helps.

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Hi Keith, so having CKD, you must see a nephrologist to keep up with your kidney function. I was having blood cells in my urine at my diagnosis, but as it turns out, I have "limited" GPA....most of my issues are in my sinus, ears, throat, and lungs. As the years have passed, I am now suffering from the effects of the medication that I've had to take all of these years. My kidneys are showing inflammation in my blood tests, but off and on. This is a strange illness! So since your kidney damage, have you ever had kidney failure and had to have dialysis?

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Hi Lillie yes i see the consultant about every six weeks and have blood tests prior to my visits so they can monitor me which is vital so if anything starts to show they can act quickly which is comforting as you say its a terrible illness.I have not had dialysis but when i was first diagnosed in 2015 they made the decision to give me a plasma exchange instead of dialysis and it seemed to work but i am always aware of my kidney function and how it fluctuates because last year mine dropped to mid twenties and the vasculitis was coming back and this is when they put me on Rituximab and this brought me back into remission.

It can be depressing but if you think how far research has brought treatment on in a relative short time its brilliant.Keep talking and positive thoughts lillie speak soon.

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Your doctors seem to be doing a great job right from the beginning of your illness. I have had the Rituximab 5 times over the last 10years. My wegeners never truly goes into a remission. They call it "simmering", and I have taken 5mg prednisone daily for the entire time that Ive had wegeners. It seems to keep it at bay. It does seem that my bladder infections are worrisome to my doctors, and they have encouraged me to get a nephrologist, as my creatinine has been showing a bit of inflammation as of late, but not enough to take serious action. So I drink lots of water and keep Apple Cider Vinegar (with the mother) in my cabinet, and take at least a tablespoon or 2 daily. This is supposed to be good for many things, and bladder and kidney health is one of them. Thank you for the encouraging words, and you do the same! Talk soon.

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Hi lillie good to hear from you and the apple cider is interesting.I have recently though been experiencing bouts of nausea and not quite sure why i have started to think that the Lansoprazole i am taking every day may be the problem.I will be speaking to my consultant on the 1st sept and see if i have to carry on with it and whether this might be the cause.In terms of my creatinine my level is high but has been decreasing albeit slowly but its in the right direction thankfully.Hope you keep well talk later.

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Hi Lillybweggie,

i'm curious to know what has caused your sinus, nose and eye problems -- was it the disease before treatment, the medication you've been on, or the disease over time even though it's been under control with low dose prednisone?

I was just diagnosed with Wegener's last December and my doctors are still working to try to get it into remission. Wondering what I might expect in the years to come.....

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Hi MarciaEileen, I am so sorry about your diagnosis. Well, everything that has happened to my eyes, ears and nose, have happened over time. I am surprised that I don't have facial deformities because of all the crazy things my eyes and nose especially, have endured! I went through two years where my tear ducts were becoming scarred and would clog up, and my tear duct would get infected. It caused a large almond shaped pocket under my eye, next to my nose. I had to go to my EENT and have it lanced. The skin was loose and saggy, but after a couple of days, it would tighten back up! This happened with both eyes several times, before I finally had my first DCR....a tiny tube linked through the bottom and top tear duct and tied in a knot inside the sinus. This kept the tear duct open for a pretty long time. Eventually the tube would fall out and in time, infection again. I could go on, but basically, it was destruction over time. But also, I never had Rituxan until after all the destruction. I was given Cytoxan. So you may not have as destructive sinuses as I do. I have had this dz for 27 years, and it is debilitating, but listen to your body.....never second guess something.....always listen to that little voice and stay on top of this disease! Its strong, but you are stronger.... Blessings Lilly

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