Wegeners Granulomatosis diagnosed June 2009 age 43

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My experience starts in Jan 2009 with a constant cough, ENT couldn't find anything and it got better, but followed with ear ache which developed further with excrutiating pain and complete hearing loss in one ear and reduced hearing in the other by March 2009. My GP gave me antibiotics (eventually - first off told me just to drink lots of fluids!). Hearing didn't improve so after a total of 4 different anitbiotics I had another ENT appointment with a different Dr. This was June 2009, from the last week of May I had various other symptoms - aches all over, fatigue, pains in my feet whilst standing up, sickness, nose bleeds that lasted for hours, blood from my ear, and eventually blood in my urine. I atended both GP and local walk in centre during this time but no-body offered me a blood test - with hindsight this would have shown something was seriously wrong.

At the June ENT appointment the Dr saw how ill I was, kept me in hospital and I quickly got a potential diagnosis of Wegeners and was transferred eventually to The Royal Liverpool Hospital, renal unit.

I had never been in hospital (apart from when having my son) and found it very frightening. I was in for 17 days whilst having big doses of steroids, courses of plasma exchange, dialysis, biopsies, etc etc. They were very good at the hospital explaining whatever I asked, I'm not one to shy away from the truth. I was put on cyclophosphamide via intravenus for the first 3 months and prednisolone tablets after the first 3 big doses intravenusly (along with a host of other supplements). My kidneys had stopped working, I was passing no water at all so had regular dialysis via a chest line. I had plans to do peritoneal dialysis at home each evening - even had the shed booked to store all stuff!

By mid August I got the news that my kideys had improved to a stage where dialysis might not be necessary and gave it a go without - everything went well. So far my kidneys are up to 30% working - not sure if they'll get any better, now I'm on cyclophosphamide tablets (75g), and reducing prednosolone slowly. I did try to reduce the prednisolone earlier (August) but got a bad infection and was in hospital again for 10 days, then got some blood clots on my lungs and was in again for 4 days during September.

I work full time in an office and had about 4 months off - I'm back full time now. I have days where I feel groggy and tired but mostly put it to the back of my mind and \"keep going\" without over doing it.

My fears are for the future - how long will my kidneys function, is dialisys an einevitability, will I be able to go on holidays again soon, etc etc??

Sorry to go on so long - but feel better for putting finger to keyboard! Would like to hear from all of you with similary diagnosis, think it might be helpful to speak to others in the same situation. Thanks for \"listening\", Janet

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  • Posted

    I was diagnosed Jan 2009. My Kidneys are working at 40%. I often wondered the same about long term kidney failure. I asked my consultant about it. He said they should remain stable. I did not need dialysis. Im rushing away to do nightshift but I will write again soon
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    Hi Debbie, - I've been reading your posts and they are very encouraging, I too try to have a positive attitude and want to \"get back to normal\". At the moment I've been feeling a bit nauseous and get fatigued quickly. I've gone back to a low potassium diet after eating quite rich food over Christmas - Do you stick to any special diet?

    I see my consultant on Monday next and am due to reduce my prednisolone to 17.5mg, and discuss changing from cyclophosphamide to azithiaprine - my face is very round still, hoping this will reduce with the dosage. Do you still take prednisolone?

    I have an 8 year old son who wants to go play tennis asap - not sure I can keep up with him at the moment, took me a lot of effort to make a snowman with him last week! Work have been great with me too and I went back gradually Nov/Dec and now full time, my job is quite sedentry so it's not too taxing - it's just fitting everything else in school run, shopping etc - My husband's great - does lots round the house to help. We missed not going on holiday abroad last year - hopefully might make it this year. Look forward to hearing from you, Janet

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  • Posted

    Hi - just updating my status - It's now over 18 months since my WG diagnosis and \"touch wood\" everything's going well. I now take azathioprine 75mg and only 4mp prednisolone - hopefully reducing each time I visit my Dr.

    I have no symptoms at all really now, I go the gym and eat well. My nose crusts up if I don't use my nasal cream but that's all.

    My kidneys were up to 57% function (from less than 10% when diagnosed).

    Just letting anyone know that there is hope and I work and lead a \"normal\" family life!

    Take care

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  • Posted

    Hi Janets

    Have just read your posts and wish you well. Like Debbie, I was diagnosed with WG in about May 2009. I received aggresive treament, similar to Debbie and am now on 5mg Prednisolone and 2 grammes of mycophenolate mofetil per day + other minor drugs and am going towards remission, but not quite there yet! I am retired but live a full life being as active as I can and exercise my brain by a lot of reading.

    I hope that you will continue to benefit from the treament and lead a full and rewarding life.

    Sincerely - Mo Grant

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