I used to be defined by my job or my writings. Now I am defined by my health. Can I get out of bed today? Can I think? What kind of psychotic behavior will my medications cause?
When I was on 60 mg of prednisone, I could only think in screams. Now that I am on 12 1/2 mg of prednisone, I see this body has gained 30 pounds of extra weight. I cannot wear my clothes. I am on a low protein diet because of my kidney involvement and my doctors want me to lose weight. It is ironic.
But I hope that one day my disease will be cured, that one day my kidneys will heal, that one day I will be freed from prednisone.
For now, I sit on my couch and watch the Western Scrub Jays wing in and snatch the peanuts on the balcony. One sorts the peanuts into piles of size and weight. I laugh as they squawk and fly and live in my little world. For a moment, I can forget that I am ill with a chronic illness that will eventually lead to my death. For a moment, I can be happy.
I trust that you, a wanna be doctor or researcher, will remember me. Even though I am not a child or a celebrity with a well-known disease, you will be smart enough to cure me. I wait for you.
Living with an unpronounceable disease 
Hi, I have just come across your page. I too am a WG sufferer. Please visit my webpage. I will read you blog.
Trev.. sorry to hear that you also have this disease. It is a hard road… but survivable.
I am still here. Wegeners has not killed me yet. But all the problems that is happening on top of the not knowing is getting to be too much. I feel like I am drowning. I am slowly sinking to the bottom. I wonder what will be there
Hi Trev.I felt that way the first year with WG. It is a combination of the treatment and the WGs. I have only started feeling good this last year and I have had the disease almost five years. It does get better. Just make sure that you tell you doctor about anything different. If you feel you are drowning … tell him. Sometimes it could be the prednisone… Yours, Cyn
I dont have a doctor any more. I really dont care I am going to just get on with what I have. No more tablets for me and no more pain with tests. No more enough is enough. I am now old enough to refuse treatment so I am only going to do what I want for a change. I wish my mum would have let me die last year then I would not have to worry about all of this. The worst that can happen is death and what is so bad with that you dont know anything. Living is the hard part
Trev… I am sorry that you feel this way. Death is just the end. Nothing. We have now way of knowing what happens on the other side.However, there is so much here to live for. There is the sun, the stars, animals, family. There is knowledge and other worlds.I truly don’t believe in suicide. And, if I refused meds it would be just that… There is so much to do in this life. And yes, life can be hard. I have had worse things happen to me than this illness.Happiness must be chosen. Even in the midst of pain and agony a person can be happy. Living is the hard part. But, living is also the best part. I have met so many people and so many animals who I wuold have never met or loved if I had just given up.Yours, Cyn
Things in my life I prefer to forget about. But WG is in my past. I recently returned to my doctors in Brisbane. A good result considering that I have not had pred. for about 6 months now. I am back on tablets. Lovan and Atacand. But kidney are still the same. No worse so that is a plus. But I get tired fast. Breathing tests showed a progressive decrease so I am now on ventilin. Sure makes a difference, but not as tired. My hearing is getting worse though. Just had a hearing test waiting for the verdict.I would really like a job and earn some money, but who will ever employ me. I have no skills and cannot work a full week with the days of not being able to get out of bed. Nobody understands this, and I wont bother to try and explain. It is all to difficult.
Trev,I am glad you are getting some treatment. WG has caused a lot of problems for me (hypertension, kidney problems, etc.). And, I do understand about work. I cannot work myself. I get too tired and I get sick easily.But, I truly believe that there is something for you. For me it is writing. As for WG being in the past, please watch it. WG is a snake that never leaves us. There is no cure… the only promise we have is that we can keep it quiet.Hugs… Cyn
Hey i just read your blog and i wanted to say i am to a person with Wegener’s disease to. I was 13 when diagnosed and it effected both kidneys. And now i am 14 and on dialysis awaiting a kidney. i hope one day to a smart doctor will come and make a med. to cure this disease.
I am a mother of two, 27 years old with WG – have been diagnosed since I was 14 years old. I too decided to stop treatment. I was allergic to cyclophosphamide, and could not tolerate any cytotoxics anyway.However, I have two small children, and so I decided, for them, if I showed any symptoms to resume some kind of therapy. And here I am. Seven weeks pregnant with my 3rd child, and i’ve lost my hearing, and my lungs are deteriorating. I can just hear my medics saying ‘I told you so….’I am WG patient in denial. I always have been.
Gwenllian…Contact me at cynbagley@hotmail.com. We can talk.BTW there both Cellcept and Rituxan are new and viable medications for people who cannot tolerate cytotoxics. Cellcept can be taken when you are pregnant.GET to a doctor now… TALK about Cellcept.Hugs… This is a bad disease and it is hard to have it at such a young age.Yours, Cyn
Kayla,I am so sorry to hear this… You have my prayers.Yours, Cyn
Hey CynthiaI'm Firas i have WG too since 2005 i started prednisone as 60 mg too . don't worry about the weight gain you will lose it easily i hope so coz it's all water from predisone i lost 14 KG in 2 moths after starting going to GYM I'm on methotrexate now i used cyclophosphomaid i used rutiximab also my daily drugs now are predinsone bactrim pentazole and i take vitamins im almost 22 now i got WG when i was 18 i talked alot but really i would like to contact people who have WG and can understand me i found several in your page i hope you and the others add my e-mail el3raqi_333@hotmail.comi believe that i cant transform WG to good thing for me i believe that god just gave me what is the best for me life is a backage we have to take it as a wholeto all WG people just keep following up be more carful about you health and WG will be as if it dosen't exist ejoy ur life the only thing i can think about is that WG are just different and special hope to find you on my email listexcuse my language I'm a foreigner best regardsFiras
i meant i can transform 🙂
Hi Firas,Thanks for commenting. WG is a hard road, but it can transform the individual … in different ways.:-) Cyn
Hi all,My grandma was diagnosed with a form of WG in March. She was sick with what they thought was pneumonia since December. Her first visit to the hospital was in January, where they thought that she was cured from her pneumonia. She was in the hospital again in March for a week in a half when they finally realized what it was. Now she's in the ICU and on life support and they don't know what to do. Do you have any advice. Any doctors that I can contact? I am desperate for any type of advice… I am convinced that no one around here knows enough about WG to help her!! PLEASE HELP! You can contact me at etqt13@aol.com
Hay that too bad to hear I've had the disease for two years also, I started on 75 mg, and i became a fat ass at first, but dn't wry abt that I just worked out like mad crazy and lost it all, and now i'm just athletic, and box and do anything I want to do, as for the death part will I know there's alot of different cases and that it varies, but as long as your treatement you should be fine, but trust me try the excercise thing it'll help with your emotions, and your physical feelings, as in how you feel physically, well anyway good luck anyway if you want to add me on facebook my name is Constantine Villincio gd luck and take care
I'm sorry to hear that your going through all of that, I have Wegners also I was diagnosed with it about two years ago, abt the weight dn't wry abt it, its natural to eat more since ur not used to the steroids i started out on 75mg or somethin like that, but u'll get it under control, plus just exercise, I worked out mad crazy and lost it all, I work out, box, do everythin I want yah i get the occasional joint pains but nothing i can't push through, and nothing u can't push through either, anyway there's alot to enjoy in life, just look for the positive things or things u enjoy and do them, anyway my name is Constantine Villincio so u can add me on facebook if u want to, i'd be happy to be friends with u we cld talk abt what we're goin through and stuff.
Hi Underground – I have had this disease now for eight and a half years. Still chubby, but not as moon-faced, thank goodness. You can find me on FB, although I am not there much since I have been doing some writing. Cynthia Bagley – Hope you are doing well.Cyn
Mlnrouse@yahoo.com
BCB2Cool said….Hi, I am 12 years old and was just diagnosed with Limited WG. My mom says that although it's a serious disease, we were lucky to have caught it so soon. I have large nodules in my lungs and my mom is talking with my doctor on the meds. Some of the side effects are really scary. I feel normal and just want my life back to normal. So many doctors, so many pictures of my body, so much bloodwork, when will ever end or is this just the start???????
BCB2Cool,I am so sorry that you have started the WG journey at such a young age. I am 50 now, and started this journey when I was 41 1/2 (8.5 years ago). And lets be honest, you are so lucky to have this caught early. They have much better meds to help you than I had just a few years ago.They may even find a cure for the disease by the time you reach adulthood. I hope so.Now for the hard part – It never ends. I am in a chemical remission, and I have bloodwork every three months. I take oral chemo every day with prednisone. I have kidney problems with the WG so it can get very dangerous for me. BUT don't be deceived by the name "limited WG." It only means that they caught the WG before it went to the kidneys. You can still have many problems with your lungs.The meds help you to get WG under control and then with a suppressed immune system, you will always have to be careful of germs, bacteria and viruses.You can do it. Children younger than you care for their diabetes. They have to be adults about their health. You will need help from your mother. But, you will grow up if you take care of your body.If you want to email me, with your mother's permission of course, you can talk to me at cynbagley@hotmail.com …Although the meds are scary, the disease if untreated is scarier. As you take the meds, you will get stronger. Hugs – Cyn
Ms. Cynthia,Are you well? Are you still blogging? I have WG, just found your blog, and am wondering how you're doing.
Hi Phyllis,Yes, I still have WG and every year I have something different to deal with. But, I have had the disease now for almost 9 years. I am pretty okay though.I put a lot of info here about WG. I am writing on helium.com under Cyn Bagley and Associated Content under the same name.I have a couple of ebooks on Amazon.com and Smashwords.com.So I am still around.Hope you are doing well.Cyn
I have this disease as well.. I was diagnosed at 19..Im now 22.. it took them 7 months to figure out what it was and by that time I was down to 20% kidney function. They started me on 90 mg prednisone and cytoxan..My function went up to 50% but in the last couple months Ive had a rough flare up and am now down to 40%. Ive been on cellcept and methotrexate for over a yr now and since I continue to have new issues and frequent flare ups they want to put me back on cytoxan. I gained 100 lbs from the high dose steroids in the first year alone. I think its ironic they want me to lose weight yet keep upping my "roid" dose. Currently Im at a 98% rejection rate for a transplant because my BMI is too high.. everything seems like a contradiction. Between what my doctors say.. theyre always disagreeing on treatments and my renal/ low carb/ low fat diet.. HA! Who are they kidding.. That basically leaves me bread and water.. if they had to follow that diet for a week.. they would starve themselves. My main issue now is that my meds arent controlling my blood pressure its been unstable for months and my recent biopsy showed increasing scar tissue on my kidneys. Im scared. Its been a little over 2 yrs since Ive been diagnosed and I still dont accept having this. I try to accept it as my reality but between my doctors and my family.. its been very difficult to do. Still feel lost with all of this. Everything is changing all the time and its so frustrating. My future petrifies me all I want to do is be productive again in some way useful and know that Ill have insurance while doing so. I just wish I could catch a break!
Anonymous – I also have scar tissue on my kidneys and I have high blood pressure because o fit…I am so sorry you are scared. You need to get your blood pressure under control. You can do that with a GP – 110/75 is a good number.I understand about the diet too. I make sure that I have a low sodium diet and limit my red meat. Something that might help you is Omega 3 diet … more fish and fish oil.If you have problems with fish, then go for the flax oil. Some of the folks with this disease go vegetarian. I don't because I just can't stomach a complete vegetarian diet.About being productive… I write… but you can be productive at home w/o having to be in the work force. I had to come to an acceptance of my disease and what I could and couldn't do. The first two years with this disease is the worst. If you contact the Vasculatis Foundation, they will give you some help in getting your doctors at least onto the same page. BTW ask to be put on imuran (unless you are allergic to it). I found that imuran was better for me than methotrexate. Methotrexate did not hold my disease in check.Also there is Rituxan. Change is also fact of life. Whether you are sick or well, change happens. We get older, we lose our health, and we meet new people.It sounds like you are still in the grieving stage. It would help if you could talk to someone about your fears – if not a counselor than maybe a religious figure.Take care -Hugs – Cyn
BTW Methotrexate needs to be a high dosage to work. I know a few patients who do well on it (not people with kidney probs though). Minimum for most people is about 25mg or more depending on if the disease is active.But call the Vasculitis Foundation – they are really good at giving help to patients.
Thank you for the advice. I never would have thought of calling the V. foundation. As for Imuran.. it doesn't mix well with my blood but the Rituxan is one I haven't asked about (just learned about it on this page). As for grieving, I've never had religion pressed upon me growing up. Only been to church twice but with my most recent scares, having a talk with God is something that has been weighing on my mind more and more. I'm not really even sure as to why I haven't yet. Going to church isn't probably going to happen but I can talk to him on my own terms just need to do it already. I also saw a counselor for the first time right after Christmas and definitely want to go back. My family makes it harder to face. They still see me as the old me.. the girl who could spend 16 hrs outside doing anything and everything or inside doing whatever all day long. They still expect me to do everything I could back then and I just can't. I know Im not that person anymore but when I try to explain that to them or how Im feeling that day… I don't know they just don't understand. I can only imagine how hard it is for my parents.. It's not like they can help or make the pain go away so maybe it's their way of dealing with it but it's difficult for me to understand what they are feeling when no one will talk to me about it. I've also started researching the vegan diet since the renal diet along with low carb low fat seems impossible to follow. Especially living with 5 other people who all eat different. I know for a fact I couldn't do a 24/7 vegan life simply because I love my steak and potatoes but I've read stories where people only do it 5 or 6 days of the week then allow themselves like a burger or fries or something on the other day(s). I'm still in the research phase on that tho. When it comes to being scared… All I want is to establish some form of routine with this thing. like I said before every month something new is happening. I don't want to be one of those people who only live 5 years but I know there's no guarantees on that subject. I'm always trying to make the best of things just seems pointless and impossible 80% of the time when I'm always getting new restrictions thrown in my face.. doesn't matter whether it's my mom or my doctors dishin' them out… I usually am a very positive, open minded person, but when it comes to this disease; finding the glory in it…needless to say I keep coming up short. I know Ill figure it out eventually and comes to terms with things as they are and quit daydreaming of the life I had but focus more on the life I can have.. I keep a journal of everything with this hoping one day to establish some form of pattern. It would be wonderful if my team of docs and my family could all be on the same page. I have faith tho.Thanks again, for the feedback. I really appreciate it.
Anonymous,Oh yes, I was also a very active healthy person before the disease. Fortunately for me I was 41 before I became ill so I at least had some time to be normal. One lady in our group had the disease when she was 13-14. She is now over 50 and has had the dx for over 30 years now. I have had the disease for nine years now.I only know of three people who died under five years. I believe it was because the doctors were not treating the disease aggressively enough.Another med is Cellcept. I haven't used it because it seems to work better with the less aggressive types of the disease. But it is an option.Grief – it comes to everyone who loses something important. In our case it is our health. There are times when I am very sad when I realize that I can't walk as far as I used to. Or that I can't do karate. I was in the military for six years and I was in very good shape. My doctors felt that that was why I survived the first two years.Religion – anytime you go to a new place with new people, it can be dangerous to you because you will have a reaction to germs, bacteria, and flu. Just a warning. And if you are looking for God, you'll find him where you are.Counseling – you'll need it if you are not getting support from your family. You might want to ask for family counseling as well. It is good to talk to someone about your illness who is non-judgmental.Plus there are groups on FB and other places who are talking about the disease. Also, VF has a list of groups in your area (hopefully).Hugs – it is a long row to hoe, but you sound like a warrior. Once you get the disease under control, you might be able to find a new life for yourself.Cyn
Hello,My name is Kate. I am 24 years old and trying desperately to get a diagnosis of this disease. That may, at first, sound bizzare. The answer to what you're probably thinking is NO, I do not want WG. I just want an answer.My great grandmother died from WG, and all of the women in my family, including me, have autoimmune issues.I have been sick my entire life and my doctors have told me I have everything from TB to cancer; both discovered to not be true after biopsies and meds. I have seen doctors at the Oregon Health and Science University, a great school combined with an amazing hospital. I now reside in Austin, Texas where, unfortunately, the medical care is sub-par across the capitol. I have been referred to the Mayo Clinic, but who really has the time and money to go spend 2+weeks in Florida/Arizona/Minnesota…?I know in my heart that I have WG but no one will tell me I do. At least not yet. I went through a phase where I gave up on doctors and medications that were only treating the surface problems of my issues. I was angry and in denial. But denial can only last so long.Now I cannot breathe from sinus inflammation and ulcers, my lung nodules are back, and I often feel like someone has punched me in the nose. I wake up with terrible headaches at night, combined with dizziness, and feel like my hearing is fading. I have had lumps in my groin and neck that come and go so quickly that doctors don't believe they were ever there. I also lose control of my fine motor skills sometimes, slurring my speech and reacting to things like heat slower than usual. My biggest problem: Memory. It is completely shot. I used to be able to remember very small details of things passed, but not any longer. I feel like I'm in a haze. The world is going faster than I am, just a few miliseconds – but miliseconds that, nonetheless, are more noticeable every day.I am days away from a nasal biopsy. It is the last thing they can do to tell me if I have WG. All of my bloodwork is negative for this, negative for that (minus having high white blood counts). At one point I had high ANCA's, but that was at a time when I had little other health issues and it was ignored.Last summer I had a very invasive and painful lung biopsy…for nothing. The nodules were "gone" by the time they sliced and diced me. I threw my telephone and dented my bedroom wall when the nurse called to tell me, "good news – you don't have cancer!". Well, I beg your pardon! Cancer is a blessing in disguise. It is swift and definite, leaving you or taking you. All or nothing sounds better to me any day.I have taken meds and steroids for multiple eye disorders (neuro-retinitis, uveitis, glaucoma). My doctor's say I'm "steroid-responsive" and cannot take steroids.What, then, am I to do? What will a diagnosis bring me but more angst?I am eager to develop a friendship with someone who can help me through this, and I am eager to provide the same if possible.Cyn, you seem very strong. I assume it comes from having lived longer than I and experienced more of life. If only I could have the same strength. I may not even reach the age where I can have that.
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Just a few questions:1. Do you have a rheumatologist or an ENT that has any Vasculitis experience?2. Have you contacted the Vasculitis Foundation? http://www.vasculitisfoundation.org/There is a phone number on the site so you can talk to a volunteer. There is also a consultant page of doctors who will talk to your doctor for free.3. Plus have you considered going to Cleveland Clinic at their Vasculitis center? We just had a girl in one of our groups who was in the same position as you are at this moment. She finally packed up and showed up at the Vasculitis clinic. They diagnosed her with Wegener's Granulomatosis.4. Did you know that WG and other Vasculitis diseases can mimic other diseases?I have had this disease for nine years. Thankfully because the disease went straight to my kidneys, I had good doctors who were able to diagnose me right away.BTW if you go to the Cleveland Clinic, try and take all of your records with you… If there is any ANCA, it is likely (I am not a doctor so take it for what it is worth) that you have some form of Vasculitis.Don't wait… Call the VF and ask for help. Please.Yours, CynBTW you can contact me at cynbagley@hotmail.com if you want to talk on a private email account.
BTW if you were on steroids for awhile it could have masked the Vasculitis symptoms. Just a note.
My husband has wgeners has had for about 18 mths now and as a result lost kidney function started home diaylsis 4 weeks ago it has been a long 18 mths for everyone makes it a bit better to read wat other people have to say about this terrible illness
Thank you Jacki – There are a few of us writing about this disease. It is terrible – but we survive – and survive well.Give my regards to your husband.Cyn
Hi Cyn, 🙂 I am so glad that I just found this. It's nice to know that there are other just like me. I'm 16 and was diagnosed in November last yea after having terrible ear infections and totally losing the hearing in my left ear, I had surgery and they put in a grommit. A week after surgery I became sick with what we thought was the flu, I started having excruciating chest pain so my mum took me too the local hospital where the sent we home and told me it was a lung infection. This then worsened and we were told it was pneumonia, I was admitted into the children's hospital and was being treated for suspected tb, pneumonia and a staff infection after about 5 days I wasn't responding and was coughing up straight blood, finally all of the doctors.came to the diagnosis of wg after doing an anchor test and a nose biopsie and started cyclophosphamide. I was allowed home on the 4th of December and was admitted on the 11th of November. I spent my birthday in there and hardly remember it at all. I just had another treatment of chemo last Thursday and am due for my last one in a month! Last one. Wow that's exciting to say. I'm down to 3mg of pred from the initial 100mg. I take bactrim every morning , so glad to have people to share my story with that understand! If there are any teens around my age that want to talk please don't hesitate to email me 🙂 I'd love someone to chat to xx ( katrinaarose95@gmail.com )
Hi Cyn 🙂 My names Katrina and I'm 16 I was diagnosed with WG in November last year. I'm about to write my own blog with my story so I will be sure to post it here. So glad to find your blog its nice to know that there are people just like me 🙂 If there are any teens that want to talk , or anyone for that matter please don't hesitate to email me, I'd lice someone to chat to, – katrinaarose95@gmail.com. xx
Katerina – I do know a couple of teens who have this disease. I think if you go to the Vasculitis Foundation http://www.vasculitisfoundation.org/I heard that they have a place where you can talk to younger people with this disease.It is a terrible disease, but I see that you are doing well emotionally and mentally. It really helps to talk to others who have this disease. I will pass your email address to other teens if I can.BTW there is a Vasculitis Social Group on Facebook for people of all ages who have the disease. I will try to get you there.Yours, Cyn
Thankyou so much Cyn 🙂 I really appreciate it!
Thankyou so much Cyn ,I really appreciate it 🙂 X
Hi out there, I am Annette from Germany, only recently moved to Queenslnad for good. I am 54 and was diagnosed WG in 2005 in ENT area and lung. To keep me alive and able to breathe there was a stent implemented into my right main bronchus, only 2009/2010 totally removed. I now have asthma attacks twice a day due to a stenosis in the bronchus, but German doctors told me I am in remission. Now Its becoming active again, Since December 2011 after I had a massiv middle ear infection. My hearing is rapidly fading and I am wearing hearing aids now. However, In December 2011 I completed my Master of International Business and I am going ahead doing my PhD now. Please, everybody, don't give up! Life is worth living. Take WG very serious, but don't let it dominate your life. I am happy, I found this blog. Hugs to all of you
Hi Annette – I was also diagnosed with WG in Germany. I am now in the US. The doctors in your part of the country seem to know a lot about the disease.Anyway, thanks for coming here. Also – there are a lot of folks on FB who have the disease. Anyone who wants to contact me there I am under Cynthia Bagley. Plus I twitter @Cynbagley.Yours, Cyn
Hi Cyn, Just thought I would post a link to my blog here if Thats okay 🙂 http://sixteenyearoldme.blogspot.com.au/?m=1xx
Thanks for asking Katrina – and it is a yes.;-) Cyn
hi my name is rashi im 24.i too have WG. i was abt to die due to WG on 26th oct 2012. doc said it was pneumonia.i was shifted to another hospital they said i am suffering from WG they gave me 3 injections(steroids of 1g) than they changed it into tablets. nw im taking 30mg med. i read abt WG. im really scared becoz this diseases is not curable and patient only live for few mnths or yrs…
i too have WG. i was abt to die due to WG on 26th oct 2012. doc said it was pneumonia.i was shifted to another hospital they said i am suffering from WG they gave me 3 injections(steroids of 1g) than they changed it into tablets. nw im taking 30mg med. i read abt WG. im really scared becoz this diseases is not curable and patient only live for few mnths or yrs…
Rashi– I have lived about ten years with this disease so far. Yes, it is scary; however, did they give you a chemo to take with your prednisone? If you want some help with your disease, I suggest that you go to http://www.vasculitisfoundation.org/ Vasculitis Foundation has some good information on their site about WGs and how to get the disease under control. Plus they have a consultant sheet of doctors who will talk to your doctor about your disease and hopefully help you get it under control. We also have groups on FaceBook of people who are battling the disease. If you are given the right treatment, you can live a good life with limits–My thoughts and prayers go with you Rashi– on this journey…Cyn Bagley