wergners granulomatosis

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i have just been diagnosed,with wg which has taken quite a long time .i have cvid immune deficency,and as a result ,i have now aquired wg.ive had numerous chest x-rays and ct scanes,also a stomach biopsy,renal and kidney biopsy.all showed up negative for various diseases..

and have now lost to date 3st,5lbs.just received letter from my consultant that i will now have treatment of •Prednisolone .hopefully very soon.

and with time not on my side,sooner than later.reading all the post here,has given me some reasurance of the out come.

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  • Posted

    hi gordon, first stay posative there is life after wg i was diagnosed 2 years ago as now. and to be honest with you at first it felt like i was not getting anywhere i started chemo in the january and my last one was in the august and at times i did wonder if i was ever going to feel well again, i am in remision now but i am still on a lot of drugs but i work. i was told i needed to walk because of long term use of steroids that have also piled on the pounds, my hubbie bought me a puppy 18 months ago and to start with i did not have the energy to walk him, now i work a night shift and walk him every morning ok its not great long walks but what ever the weather we are out there i never miss, if you need to chat there is some good people on this site that will share experiance with you and it does help .my doctors are the best but they dont feel what i do but people who post on here do and know just how you are feeling ,and are taking the medication you are or a combination of what you are taking as there is a slight difference with different people take care be strong its a long road beleive me well worth it. i have read some one bikes miles each day my self i want to do a charity walk next spring something i would not of thought i could ever do again at one point .let us know how you are doing with your treatment all the best jill
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  • Posted

    Hey Gordon and Jill, Yes there are good people on this site ready to help. I have private messaged folks my number and have tried to help out... I have changed my email address and I for some reason am inactive now so I cant log in. Chin up Gordon I too work nights have two boys to look after on my own. I bought a road bike and try to cycle 40-60 miles a week. Its harder just now as the weather is bad. I have never felt so good and I have more determination than ever before. My marriage fell apart and really I take it in my stride as i have it all in perspective now. Nothing puts me down now as 2009 was crap. Read my personal experience of WG and you will see. Im having an MRI scan on dec 2nd to help my Dr with research into Fatigue in Vasculitus. Im pleased to help. Keep positive.. Its hard but you will feel well again.... Debbie Ps To Lisa Brocklehurst How are you I tried to call but lost your number when moving and I cant log in.. xxxxxx
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  • Posted

    managed to get logged in again. Jill if you sign up i would email you my number and we can chat on the phone. i like your attitude to it.. i have just got conformation of a place on the moonwalk edinburgh.. what an event... Wegeners will not stop me.. experiencing things Debbie
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  • Posted

    Hi Debbie, i do have a log on but will have to find it i usually log on while im working but can not log into my home e mail address so when i get a chance i will dig it out busy at moment seem to be the 3 monthly round of seeing endless specialist im diebetic as well as wg and the tablets i take for wg plays havoc with the diabetis great lol take care jill
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  • Posted

    hi jill & debbie,

    thanks for your'e support,and your'e experiences.

    i have now started my medication a week ago and i now feel slightly better,and a small increase in weight,my appitite has aslso increased,andam now eating like there is no tomorrow..still thankyou both again,all the best, gordon......

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  • Posted

    Hi Gordon

    Have read your posting and replies. I just want to add that I was diagnosed with wg last year and had the usual treatment, which you can read about on other postings that I have made. I have had treatment for about 18 months now and am going towards remission, but like you, I lost a lot of weight before treatment began, I think it was about 40lbs+! Once my appetite returned, like you, I couldn't get enough food in me, double portions at every meal! I then put on too much weight, even exceeding my weight before I went down with wg. Now, I'm on a diet to lose a bit and I'm below what I was before wg and feel a lot fitter.

    If you want a morale lifter, read Debbie's experience - she is an absolute marvel.

    You will feel much better after the treatment kicks in.

    Regards - Mo Grant

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  • Posted

    There is always hope that things will be fine. My wife was diagnosed with W G nearly 5yrs ago, at the age of 77. She had been visiting the GPs fpr about a year, and treated for all sorts of ailments. But she gradually stopped eating, and was always tired, lost weight and interest, until a new doctor reffered her to hospital at short notice, it took three weeks before a correct diagnosis was made after a kidney biopsy, and moved to a renal unit. By the she weighed under 7st, and it was a fight to save her, she had kidney, liver, hearing and vocal problems, and a scan revealed that she had lesions on the brain. Pretty awful and frightening, but, 5yrs later, she is of course not up to as she was before the onset of W G but it has been in remission now for over 2 yrs, has reduced the medication greatly, and is now of Prednisolone.

    A consultant told us quite some time ago that, the majority of doctors, at hositals and GP s will go thru' their whole careers and never ever see a case of W G.

    Good Luck, and you are not alone, although tere are not many of you.

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  • Posted

    I was diagnosed with GPA 8 weeks ago after having biopsy on my sinus after 10 months of of back and forth to GP and ENT am currently under the Hammersmith renal dept for drug management. I must say I have a sense of relief knowing what I be got now still scared but at least there is now a plan
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    • Posted

      I was interested in your report. I'm very sorry that you have gone down with GPA and that you are currently attending the Renal Dept at Hammersmith Hospital. I still attend the renal clinic at St Helier hospital, where I was an in-patient on two occasions. I now attend every 3 months, on one of the last occasions I was told the GPA was in remission! So I have conquered this deadly disease! it has left me with knee pain which is so bad I can't walk without a stick. I am 88 years of age so I must not grumble!

      I wish you well with you treatment.

      Sincerely - Mo Grant

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  • Posted

    Hi I was diagnosed 8 weeks ago after being ill with sinus problems and ear infections ongoing since January. I have loss of hearing in left ear now and need hearing aid. After I had a Fess op on sinus they took biopsy and I was found to have GPA. I have just started the Prednisone been on for 2 weeks. I am having scan of kidneys tomorrow. I know how you feel you just wanna get going with your drugs plan good luck 
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  • Posted

    Hi I was diagnosed 8 weeks ago after being ill with sinus problems and ear infections ongoing since January. I have loss of hearing in left ear now and need hearing aid. After I had a Fess op on sinus they took biopsy and I was found to have GPA. I have just started the Prednisone been on for 2 weeks. I am having scan of kidneys tomorrow. I know how you feel you just wanna get going with your drugs plan good luck 
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