happy 20th year anniversary from me

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I am writing this in celebration of surviving a diagnosis of wg for over 20 yrs. s 29 and was so scared of not living to see 30. It all started in august 94. My husband and I had just moved to his childhood hometown.  For me it started in my eyes and with joint pain in my hip. I went to the dr and he treated me for pinkeye and after a week he saw me again and since my eyes were still bloodshot he accused me of not listening to him and tand wearing my contacts even though he told me not to he told me that he refused to see me from then on. I then started to experience other symptoms such as being able to keep food down, constant coughing shortness of breath and extreme aching in my whole body and fevers spiking fevers over 103. I went to the other dr in the office many times but was told I was suffering from some virus.

in october I went to visit my mom. She noticed that I was suffering with something as I had lost 40 lbs and looked as though I was on deaths door. After spiking a fever she encouraged me to go to the hospital and I didn't refuse.when I got there the dr asked why I was there as by the time we got there my fever was normal. I told them that about all my symptoms and added that I had now been coughing up blood also. The dr listened ti my lungs and said they sounded clear but with my symptoms he decided to do a chest xray. My xray showed a lot of white cloudiness and infiltration. He diagnosed me with pneumonia.  He wanted to admit me but I told him that I wanted to be hospital ized at home. He gave me my xrays and meds and told me to go to the nearest hospital asap. I returned home and went to the hospital and saw the dr who told me that I was suffering from a virus he told me to go home as he couldnt do anything in the hospital for me that I couldnt do at home. Four days later my husband saw that I was getting worse and not better so he rushed me to the hospital.  This time the dr who had refused to see me did and he hospitalized me for pneumonia.  I was there for a week then released no better than wwhen I had come in. After 3 wks passed and no change he referred me to aspecialist who admitted to the hospital in springfield and 3 days of hospitalization and a lung biopsy and a canka test he diagnosed me with wg. My recovery included treatment with prednosone which made me feel way better and made me bounce back quicker than I ever tho ught it would I was also prescribed cytoxin which I was on for 18 mos. After 3 yrs of recovery I returned back to work and within 1 yr I was verified to be in remission 

here I am 20 yrs later and still inremission and so thankful that I am still here. I know I have god to thank for that I got to see my only son grow up and start his own family 5 beautiful grand children. For those who are diagnosed with wg I can say my best advice is to live one day at a time and be thankful for it.Recovery is in itself a journey that is long but with love and support it gets better with each passing day. 

ned 

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  • Posted

    So happy to hear you are doing quite well after 20 year's with wegener's.  I got very sick in April of 2014.  Started with a fever I couldn't get rid of coughing up blood etc.  Was admitted to hospital in May 2014 with pneumonia right lung.  Diagnosis was Wegener's.  I took prednisone for 6 months, got no sleep while taking this and just stopped taking cyclophosphamide.  Going to see a new doctor this week for injections of methotrexate.  How many years did you have to take meds for?  I'm being told cyclophosphamide can cause cancer 10-15 years down the road.  Not sure about these injections don't know anything about these, possible side affects etc.  Have you had injections?  1 doc said I could take 2 cyclophosphamide per day been off these meds for 4 weeks as white count went too low from meds.  Scarry thought but my thought is I'm in remission and have been since shortly out of hospital should I continue to take meds, I mean with no symptoms at this time?  I know if I relapse could attack kidneys though, but with all these side affects to these meds?  Just want your opinion
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  • Posted

    I hope you are doing well and still on remission.  I'm happy to say that I also had been on remission for 20 years until just recently.  Here's a little about my story.  I was diagnosed in 1995 when I was 20 years old and pregnant with my first son.  At the time I was experiencing daily headaches, fevers, night sweats and chills.  I went to the ER and being that I was 3 months pregnant I was taken seriously. I had a chest x-ray and it showed, just like yours, spots of cloudiness.  I was immediately admitted as they believed it was TB. They tested me for TB and it was negative.  Long story short after 23 days in the hospital, a bronchoscopy, nose biopsy and lung biopsy I was diagnosed with Wagener’s.  I took prednisone and cyclophosphamide for about 6 months and went on remission.  My son was born premature at 8 months and weighing 4lbs 9 ounces but without any other complications.  I’m pretty sure being pregnant when this decease came forth saved my life…I was fortunate to have been on remission for this long.

    My story is different now…I had been sick for about four months at the end of 2016, and being treated for sinus & throat infections and then bronchitis.  I was well for just a couple of days and would get sick again. I finally convinced my doctor to refer me to a rheumatologist, I had the very bad feeling that Wagener’s was back. Sure enough after some bloods test he confirmed that Wagener’s was active again.  I had never taken any maintenance medicine, which the rheumatologist now says I should have taken.   Now it’s been 8 months since Wagener’s is active and I’m taking prednisone and Imuran but it hasn’t stabilized my blood test yet. I deal with the aches and pains of this decease on a daily basis and take one day at a time. I hope to be able to get a pain free remission again.

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  • Posted

    Thank you for sharing your story. It's so encouraging. My 11 year old is currently in the treatment phase and doing well. I thank God every day that we caught this condition early enough to start the treatment. Since your remission some 17 or so years ago, have you had any issues with relapse?

    May God continue to bless you.

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  • Posted

    Congratulations and thanks for your post! For those of us newly diagnosed, it's good to hear success stories. My adventure started in Aug '16 and I'm still positive. But, numbers going down, so...hopeful that I will achieve remission soon also. Very thankful to be here. I had a rough start with this disease.

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  • Posted

    It's so sad to read how hard it is to get diagnosed with Wegener"s. I had a collapsed lung when a doctor put me in the hospital and spent 8 days to get a correct diagnosed. I was 61 yrs. old when I was dignosed in June, 2009. I had a predisone and cytoxin treatment. I've never been able to go back to work. I got better but still have a lot of issues. I think my age has been a factor in my treatments. I'm so glad to hear you are doing so well.

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