ive had wegeners for 4and 1/2 years

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im 61 years old i still work someone having alot of mucscle spacisms  the gabapentin400mgcap its for nerves its non narcotic of course ask your doctort.i good this desises in my eye.i had radiation 3 times it keeps this at bay.i have good hours anion with anything elseduntts to much i cant f bad hours. i wish i could say good days and bad days but its hours.i take at the moment 65 mg pregnazon i know tha

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  • Posted

    Hi Ron

    Sounds typical of wegeners my friend.

    I got the disease at age 36, pretty much unheard of for that age group. It's devastated my life to say the least because I had no life insurance etc so I have no choice but to continue life as if I'm not ill. This is hard as days come and go and I can't get out the house due to the illness. This had led to financial issues which cause more stress which affects the wegeners resulting in being more poorly.

    I too now have it in my eyes, my nose, throat, chest and lungs.

    Whilst the doctors get the disease into remission for 6-12 months if I'm lucky , before a major flare up, the secondary illnesses that come such as fibromyalgia, my nerves are shot.

    It's just come about that the ritoximab has lowered my immune system too much and I've been refused ritoximab treatment , infact other than pain killers I can't take anything as it all aims at lowering the white cell count which lowers the immune system. I now have a cold that I've had since November, continuous coughing resulting in feeling like I'm being hit with a bat around my head and shooting pains off my nerves go down my back and back of my arms.

    The answer according to the doctors is take more pain killers but the drugs make me drowsy resulting in not working resulting in no money resulting in stress.

    I have no answer to where I go from here, nor do the doctors , of course they are not bothered I'm in verge of loosing everything I've worked for.

    I've given to charities all my adult life, Mc Donald's housing for parents with sick babies being my main choice. I've done everything one is expected to do in life as a responsible adult. My son represents Great Britain in the WAKO GB squad.

    It just shows that this illness doesn't care whom it destroys or when.

    Basically we just have to get on with life in whatever way we can. Work around the pain and smile through the unknown.

    If I can help anyone understand this illness better or stop one person living like I have to or aid one person to come to terms with this disease then please drop me a line.

    I've been unable to work for four months and am relying on the warmer weather to change that, I just need it to come quick before I have to admit defeat. I I worked around 7 months out of the past year so having four months out in one go is only aiding this illness to kill me quicker. Just what is one supposed to do??

    Bear in mind I've had this illness for 9 years so I should be happy I'm still alive, others are not.

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    • Posted

      I, too, have financial problems with this disease. I had insurance. I had worked for 43 years and had disability insurance and 401k, but I lost my disability when I turned 65. Then I had to start using my 401k until it was all gone. The stock market also took some of my401k. I haven't been able to return to work so I survive on what Social Security I get. Don't expect any help form charities. I get phone calls all the time asking me to donate to the Breast Cancer association, and when I try to explain that I'm sick with a rare disease, they hang up on me. I have tried every way possible to start a "work at home" job, but have been defeated by everything. But I don't give up. Everyday I get up planning what I'm going to do, but I'm weak, I get very dizzy and I eventually have to sit down ar lay down. But I still have my dreams. I found this poem that explains me and you also.

      DREAMS

      I DREAM OF DEEP LONG SLEEP,

      I DREAM OF PAIN FREE DAYS,

      I DREAM OF UNDERSTANDING,

      I DREAM OF COMPASSION,

      I DREAM OF THE PERSON I WAS,

      I DREAM OF WAKING UP TO MY

      OLD LIFE TO FIND THAT ALL OF

      THIS HAS BEEN A BAD DREAM

      AND I AM ME AGAIN.

      BY PINEY

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    • Posted

      I was diagnosed with wegener's in 2016 my life has been downhill ever since long story short was having difficultly breathing went to er just cause was admitted had lung biopsy (painful) and kidney biopsy confimed GPA along with blood work. Stated on 60mg of prednisone developed acne,uncontrolled diabetes, major pysch issues and unbearable pain. NO ONE!!!!! Knows how emotional it makes you feel. When you explain or try to tell someone how you feel no one takes you seriously. I dont wish this disease on my worst enemy its a slow painful death and some days i wish it would end already. Your quality of life is compromised. Finding this website has been a comfort its nice to know how other people are dealing with this disease and seeing that my symptoms and feelings are shared by many. Not just me being craxy and seeking attention.

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    • Posted

      I am so sorry! I feel your pain. I was diagnosed in 2009. People just don't understand how bad this disease affects us. I've been sick with my sinuses and back pain, so I haven't been keeping up with everyone. I do hope you feel better. Keep in touch.

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  • Posted

    thank you very much for your kind words its seems that im so alone some times ive ose my company i had for 40 years im back to making a 10th of what i use to have it wasnt for my wife id be on streets this desise is horifing and there is no other way to decribe it if it wasnt for jesus and my wife who is without a dought the best woman that god ever created i dont know what would happen again thank you RON
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    • Posted

      Hi Ron

      U sound like ur wife is a double diamond , mine is too. They need relief for what they see us go through and feel helpless. They know we are in agony but the depth of it can only be seen by the person directly going through it. I say directly as really our family goes through it also, especially our wives.

      Sometimes I look at her and see pity on her face, it's hurts more than the illness.

      I wish u all the best Ron and if ever u want to chat just drop me a line. U sound like a good bloke, another that didn't deserve the hand u have been dealt.

      All the best buddy

      Jay

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  • Posted

    65 mg of prednisone is quite high.  The other med is for the mucscle problems but are you taking anything else to control the wegeners.?  Rituxan worked really well for my son and now hes on methotroxate.  These meds control the wegeners.  I'm sad that you are having to deal with this by the hours and not days.  Review your medicines with your doctor and if they are not helping its time to try another medicine.  There are lots of different medicines for this disease.

    Don't give up hope.

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  • Posted

    I was 61 when I was dignosed with Wegener's. I have lived nearly 8 years since I was dignosed with this disease. I, too, have Wegener's in my right eye. I was getting shots in my eye, but stopped because I didn't see any difference in my sight and I couldn't afford the treatments. I started out on 80 mg of prednisone when I was dignosed and was gradually winged of it. I have Wegener's in my brain, eye, sinunses, lungs, throat, arms, hands, legs and arms. My heart is also afffected by it. I also have a heart murmur and an enlarged heart. I have also had a small stroke. But I never give up. All I can tell you is have faith, take your medicine as precribed, and take vitamins as I do. I take a prescription drug for my memory. I take a muliti vitamin, a eye vitamin, a hair, nails, & skin vitamin daily. I hope you get to feeling better. Bless you.

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    • Posted

      Sorry to jump in, but I'm wondering what are your symptoms that wageners is in your eye and brain? I've had a 20 year remission with symptoms in my sinuses just appearung 6 months ago. I'm on 15 mg prednisone and 100 mg imuran but the pain in my right eye and right side of my temple are unbearable. The medicine doesn't seem to be helping at all.

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    • Posted

      The sympton in my eye is like muscular dystrophy. I have a dark spot about the size of a nail head in the middle of my eye. The specialist that I was seeing said that he was sure that it was Wegener's. It's only in my right eye. I have 20/20 vision in my left eye. Concerning my brain, I suddenly started forgetting things and not remembering names. I had always had a very good memory. People would tell me that I had too good of a memory. I'm not telling you to scare you. I was diagnosed in 2009 at the age of 61. I'm now fixing to be 69 in April. I have had  symptons of Wegener's all of my life. It just all attacked me when I was 61. I was misdiagnosed several times. I don't get on the internet ever day, but it does help me to talk to someone. I hope you do well. Keep posting.

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