I was diagnosed with wegeners in nov 2007 aged 45.

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The symptoms began with recurrent ear infections , rapid pulse rate, blocked nose , blocked ears and hearing loss now and then.

In October 2007 my health got worse I was extremely fatigued, I actually went totally deaf in both ears ,I had strawberry gums that were bleeding ,inflamed dry eyes ,no appetite and was losing a lot of weight . I also had a strange sensation in my scalp it felt like a soft babies scalp and I was getting terrible pains in my head . I spent two weeks in bed and diagnosed by gp with diabetes (don't have a clue where he got that from) and a chronic ear infection. My GP was completely useless and made me wait two weeks for blood tests and even then he insisted that it wasn't an emergency but my daughter managed to get the nurse taking the blood test to send it through as urgent. The results came back that afternoon and the imflammation levels were really high and I was sent to princess royal hospital in kent . It took about a week to diagnose at ENT after my sinus op they compared blood results and biopsy. I was then refered to my consultant put me on prednisolone then a week later I started the chemotherapy Intravenous but had a relapse in the march 08 and my consultant started me on cyclophosphamide tablets each day which worked for me. I am now on azathioprine and gradually reducing prednisolone. It has been a very stressful and expensive illness I havn't got all my hearing back and I have also lost the cartilage in the middle of my nose . I was wondering if anyone has had reconstructive surgery?

I was also wondering if anyone has managed to find a GP who understands wegeners ?

I hope to hear from anyone who wants to share their experience .

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  • Posted

    All sounds so familiar to me!!

    I suffered with ear and nose problems, also damage to my lungs.

    I have also had a lot of nerve damage to the lower legs and feet which has left me with drop foot.

    I to start on Cyclophosphamide and Prednisolone which seemed to help at first but then my heath went downhill again. I then had 2 infusion of Rutuximab which started an improvement. I am now on Metotrexate and slowly reducing the Steriods.

    I feel things are getting better though I still have off days if I try and do too much.

    My condition has not reach remission let's hope that is not to far away.

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  • Posted

    Thanks for replying and sharing your experience. I think its only the sufferers that really understand what you are going through.

    Are you able to work?

    I gave up work due to hearing loss and I have a lot of time off work due to infections and the company I worked for wasn't very sympathetic.

    I get off days especially if I have done lots of housework then the next day I have no energy.

    I hope your treatment is sucessfull.

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  • Posted

    Chris, Things are moving slowly in the right direction although the walking and breathlessness are causing problems.

    Work have been very good to me over the last 8 months but I think crunch time regards pay may be looming. I will then see what options financially will be available.

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  • Posted

    Hi , I am glad you're making progress .

    I have been researching wegeners online recently as feel a bit stronger reading about it now ,I had been to scared to before. I read that there could be a link to dust exposure and chemicals to wegeners.

    I can remember a time when I was exposed to dust at work .

    Can you remember being exposed to dust or worked with chemicals?

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  • Posted

    hi

    i had the hearing loss as well in the early days, also had the nose problem and cartlidge removed although it hasn't made much difference to the look of my nose as yet. i had the mononuroplex in right lower leg loosing sensation under knee to middle of top of foot which give a little limp but not too bad. the main problem i find is the continual fatigue. i think this is the most depressing and hardest to cope with, being a shadow of my former self. But hopefully i am doing well, going for liver scan soon to see if there are problems there. Its awful to hear about others who are suffering but reassuring as well to know we are not alone.

    regards

    carole

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  • Posted

    I am glad you are recovering . I am the same as I still get fatigued and I am overweight due to the steriods . I get very bad days of lowness about whats happened to me and find it hard to feel like myself and do the things I used to enjoy.

    My daughter has ordered me a book from amazon called ,\" there must be a reason , my daughters battle with wegeners granulamatosis\"

    I am hoping that it will help me come to terms with this illness and also the girl in this book has a saddle nose.

    I don't know what I would do without my daugther ,as she is the only one who understands what I am gonig through. My family have been useless and my daughter thinks its extremely unfair that my siblings expect me to still care for my father as I did before I got ill , they are perfectly healthy .

    My daughters life has changed a lot because she is constantly worried about me. Especially at the moment with this swine flu going around ,she is worried about my immune system.

    I am glad your partner has been supportive . I find when I tell people that I have an auto immune they don't know what it is so I daren't say the word wegeners.

    Keep wellx

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  • Posted

    Chris, I felt so anxious for you that you think your family have been useless .People react more sympatheticaly if they can see the problem i.e. broken leg!!!!!!!!!. I think your daughter is a great support to you. Wegeners makes you feel so alone. I have met fantastic people who understand. One person has been 25 years with it and had a kidney transplant. The Stuart Strange Trust is a great help. Paul Pegg is a gem. His wife had it 37 years. He helped me get in touch with others which turned my life around after diagnosis. For everyone with Wegeners type in Helen Hayton to your search and be inspired. I read about her story after I was diagnosed That kept me going. Debbie Ley
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  • Posted

    Hi i have just posted about my experience. My partner doesnt expect me to do all the cleaning etc still but i do try to do as much as i can, its the kids aged 7 and 11 that dont really understand that i have no energy on certain days and i am tired all the time. the last week or so I have been feeling quite low and feeling sorry for myself. It is all brand new I have worked from a week after leaving school at 16 upto last june when i got made redundant aged 33. I get fed up of being at home all day especially if i cant do anything because of the disease i know i am not well enough to go back to work because even though i do some of the cleaning it doesnt half take it out of me. Luckily all my family and friends have been supportive. Me and my other half have recently left the pub business because there was no way we could run a pub and look after my health, and i could see the whole thing was taking it toll on my partner. The disease affected my skin and kidneys which are working at 30% at the mo. I have also put on weight but the steroids seem to make me really hungry all the time. I hope we all make a good recovery and look forward to reading more experiences of wegeners on this site, i have only come across it today but it good to hear of other people who have the same and are experiencing similar symptoms as myself and hopefuuly we can all offer each other some support.
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  • Posted

    Hi. I suppose I'm lucky as I don't feel fatigue. I feel really normal. Like you I have 2 kids and have worked since leaving school. I didn't smoke. I eat healthy. walk and cycle. Had my share of red wine!!!!!!!!. I was so shocked at going into hospital and being separated from my kids. Lucas was only 9 weeks. I have just returned to work and it was a real breakthrough for me. I so feel for you. I dont get down anymore. It is frustrating when you think of what you were capable of and how the disease has changed that. When you feel so low its hard to bemotivated. Is there lots you are interested in? I love my garden and that that has given me some escape. Much love to you. Debbie
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  • Posted

    can you tell me if you have found a study or a doctor I can quote as to relationship between wegeners and

    dust. i have been exposed to tailings from a mine that contained mercury, arsenic and lead. and wonder if there is a connection thank you

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