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Here I go again
Hi My Name is Sandy N
I was first diagnosed with WG after an Open Lung Biopsy in 1991. I was 27 years old with 3 small children.
I had WG in my Lungs, Sinuses and Ear. I had muscle and joint pain and extreme tiredness and shortness of breathe - I trouble walking up 3 steps without needing a rest.
The original Doc I saw prescribed Bactrim DS and said I only had limited WG so that was all I should need and some low dose prednisone.
The surgeon spoke to me after he had discussions with the Physician and strongly recommended a get another Dr as he felt my case was much more serious as he was the Dr who opened my up and did the biopsies.
I was recommended and Excellent Dr who was working at the time in RPA Sydney and also worked in Canberra. He immediately started my in High Dose Prednisone, Cyclophosphamide IV (1500mg) & DS Bactrim but after 5 months I couldn't take it anymore and changed to Cyclophosphamide tablets 150mg per day and continued to take Prednisone for a further 7 months. (After which I stopped all treatment) .. I was well again
I have been in remission for over 20 years until August 2014.
I knew everything was going pear shape 12 months ago. When my sinuses wouldn't stop running down the back of my throat, my ear drums kept perforating (currently perforated for the past 4 months) hearing loss in my left ear, my eyes are red, puffy, I have blepharitis, a lump on my bottom eyelid, swollen face, droopy eye lids sometimes one eye sometimes both, Pain behind my eye, double vision which comes and goes.Sore nose - red raw inside sometimes small amount of blood when I blow my nose, I have pain in my joints, swollen knees I thought I had a DVT but the scan showed a ruptured Bakers Cyst which must be now happening in my other knee as well. I also have similar pain in my shoulders, arms, elbows, and thighs, neck and top of my spine. My GP did some blood test which showed I was ANCA Negative but gave me some Predisone and arranged an emergency appointment at the John Hunter Hospital at Newcastle. The Dr that saw me firstly said "I didn't look sick enough to have WG and what would make me think I would go out of remission after 20 years". The second Dr I saw was Professor who asked me had I been through a lot of stress lately and I responded "yes" so he thought that I should take St Johns Wort a natural anti-depressant and some Plaquenil. He advised me to stop taking the high dose Prednisone that my GP had given me as he said High Dose Prednisone (50mg / day) would kill me ! Wow!
Feeling worse as the weeks went on and obviously getting no where I sort out the original Dr I saw over 20 years ago and waited patiently and travelled six hours to my appointment.
My GP had sent numerous test results and within 10 minutes of my appointment With (Professor who know everything about Wegeners ) he said "it clear to me you have gone out of remission". He started me on Azathioprine and Prednisone which was working well for a month and then my blood tests showed my Liver Tests were getting toxic so I had to swap to Methetrexate which did nothing all my symptoms instantly returned we tried higher doses 15mg then 20mg then 25mg but no improvement.
Yesterday I started back on the Cyclophosphamide (1000mg) IV , Mesma, Ondancetron, Maxilon, and continuing Prednisone .
Even though I hate Cyclophosphamide as I get very ill on it. I am hopeful to get back in remission and get my life back.
That's my story. I have had over 20 years of remission and I am keen to get back there... its a much nicer place.
Can anyone tell me if Cyclophosphamide IV (1000mg) every 4 weeks is low dose chemotheraphy ???
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Originally Posted by SandyN
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