My experience of Wegeners

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ln March 2008 I was experiencing ear problems which then led to complete deafness in both ears. I was given numerous amounts of ear drops for ear infection which cost me an awful lot of money. I experienced

severe joint pains, sinus pains, severe pains in my head, severe nose bleeds and a bad cough, so I went to see an ear specialist as my GP had no idea what was wrong with me. The specialist then took blood tests that diagnosed I had Wegeners. I then found out that i had iflammation on my lungs which was causing me to cough up blood I was immediately put on steroids which helped with my hearing .

I was then referred to a rheumatologist who put me on an infusion of Rituximab at the countess of chester hospital which has greatly improved my condition. I am now in remission but have suffered from a kidney infection recently. However I feel more human now than I did last year. I found the whole experience very frightening and I felt very alone as noboby seemed to know what was happening to my body. It was very stressful for me and my family. I have been informed that I shou go on to live a normal life now with the right treatment. Hope is out there.... N x

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  • Posted

    Hi Norma

    very much the same symptoms that I had, although it took my doctors and consultants a lot longer to sort out my condition. I have suffered a lot of nerve damage to my legs and also my lungs have suffered a lot. My first lot of treatment did not work, so in March 2009 a was given 2 infusions of Rutuximab which started to improve things. I am now on Metotrexate to try and get me to remission.

    My ears still are not right but I do now feel a lot better.

    It would be interesting to know if like yourself, when in remission do you feel as good as you use to?

    Wegeners does make you feel isolated that is why I find this site useful

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  • Posted

    Hello! Thankyou for your message! In relpy to your question as to wether I feel as well in remission as I used to, not really, I get more tired doing normal tasks but I have got back to my gardening which I am glad about. Recently I have had a lot of sinus pains in my face and headaches, not sure wether it is due to the Wegener's or a virus, it is hard to tell at the moment. I havn't really put myself to the test yet physically, I am going to do some cycling with my daughter soon hopefully I can keep up with her! In the past I have been a physically fit person, I excercised in the gym for many years and did a lot of walking, I havn't been back to the gym and I find my walking is all I want to do at the moment and I find I get much more out of breath when I'm walking. I see my specialist at the end of August hopefully I will still be in remission. Best Wishes, Norma.
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  • Posted

    It's good to read these accounts of experiences of WG, which I was diagnosed with in April 2009. I've got very similar symptoms - aching limbs, tiredness, deafness, kidney inflammation, red/sore eyes. I reacted badly to azothioprine (vomiting all the time) so I was put on Cyclophosphamide (just finished 3 month course). Steroids dose was very high, now slowly coming down, and have just started mycophenolate. Has anyone out there been on mycophenolate? Is it OK, any bad side-effects? I'm even rarer, in that as well as having WG (diagnosed early by a superb rheumatologist called Brenda Stuart), it turns out I only was born with only one kidney! Anyone else out there in with this very rare coincidence? I'm looking to find out how to live long-term with this (I'm 46). I'm back at work (teaching), and want to get back in to cycling and the gym eventually. Best wishes to all with WG.
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  • Posted

    Michael, I was very ill and too was on Cyclophosamide for 3 months. Once I was off that I began feeling bett er. Very slowly I began to regain strength. I never thought I would get back to work. My recovery was quite tough as when I got out of hospital I had a 11 week old baby and a jealous 4 year old. I have a 5 minute walk to the school nursery and that left me breathless. I couldnt believe where my fitness had gone I used to cycle up local hills and walk for miles. As for trying to cope with having this long term its tough. I found once I was able to carry out normal everyday activities I began to feel positive I challenge myself to physical goals . Ive started swimming,and I now walk with a spring in my step. I too am getting back to cycling. I think its good to keep yourself focused on your intentions to go back to things you enjoy as once you achieve them its a mental boost for you. Im on 10 prendisalone and hope to get under that soon as my face has puffed up with the steroids. I am back working night shift and that was a boost. I am determined to have a normal happy life as I was before Wegeners. Take care and take things slowly. Debbie Ley
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  • Posted

    On reading some of the accounts on this site i feel somewhat lucky that i was diagnosed quickly (july 2009 after being admitted to hospital with ongoing fever exhaustion deafness etc) and that my disease has not affected my kidneys. I do however experience severe pains in my lower leg muscles and knee joints after walking about 50m, has anyone else experienced this and if so for how long?

    I like everyone else seem to have a list of questions that there are no answeres to, as the symptoms and effects of the disease appear to be individualised.

    I have found that pain in my face especially the nasal bone indicates that i have been pushing myself too hard, does anyone know if this will increase necrosis?

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