Mas78
08-30-2014, 06:54 AM
Hi,
I just found this forum a few weeks ago, I was told I had Wegener’s back in December of 2000 when I was 22.
My story is I didn’t feel good for a lot of the last half of 2000 and was getting weak to where it was hard to get out of a chair or into a vehicle, I hadn’t seen a doctor for anything in years other than a pre-employment screen a few years earlier. In Mid-November I seen a local doctor, he didn’t know what was wrong just that I had a high white cell count. Thanksgiving weekend at my parents I woke up in the recliner late in the evening in a lot of pain and my mom took me to the ER. The doctor there said I had Pinkeye and Pleurisy. He was half right; I did have the pleurisy but not pinkeye. After acouple days on Tylenol 3 I still wasn’t better and seen my new local doctor again. At this point I was having a lot of blood in my urine and could hardly pick my feet up. I had lots of red spots appearing on my legs and what looked like bruises under all my finger nails. My eyes were so bloodshot I didn’t have a lot of white left showing. I was constantly blowing my nose like I had a cold every day. My joints hurt to the point it hurt to stand up or even pick up a glass without discomfort. When I would sleep I would soak the pillow and sheets with sweat. Anything I would try to eat or drink I couldn’t keep it down and as a result I was losing a lot of weight.
Fortunately on the second office visit he referred me to a Rheumatologist that worked me in the next afternoon due to my health. From there I spent a few weeks in the hospital feeling like a lab rat. My lungs were getting worse and I started spitting up some blood, my kidneys weren’t doing very good and they talked to me about possible dialysis if things didn’t improve, I ended up getting muscle and nerve biopsy done on my leg, Skin biopsy of the red spots on my other leg, lung biopsy, and countless blood draws. After about aweek and half the labs came back that I had positive C ANCA and that it was very high, I don’t remember the numbers anymore. I do remember getting 250mg of injected prednisone every 12 hours for two or three days. And I was on 175mg of Cytoxan with 80mg of prednisone daily after discharge.
I also got diagnosed with Raynaud syndrome while in the hospital, for some time before all this I had some issues with fingers and toes getting cold, but during this winter after discharged from the hospital a couple fingers on either hand would turn white after a couple minutes outside. Over the years it has gotten better but my ring finger on my right hand will go numb rather quickly but it takes a while before it turns white.
6 weeks went by after discharge seeing a lung doctor, rheumatologist, and kidney doctors on a very regular basis. My strength had returned fairly well And then I got released to go back to work, for two days, Then I ended up with a DVT (blood clots in my left calf).
So now I got to add an Internist to the mix to take care of my Coumadin at which I ended up on 12.5mg of daily.
I think I was on treatment with the Cytoxan and prednisone for 2-1/2 to 3 years before I was taken off of it with still a low positive C-ANCA. So it has been a good 10-11years since I have seen my Rheumatologist as I seen my Kidney specialist for blood pressure meds and to monitor my kidney function.
After about 3 years my kidney doctor loved to have Pre Med students see me whenever there was one in the clinic while I had an appointment. He also told me that he used my case (without my name ) when he would teach at a college due to the rarity of the disease.
In my chart from when I first seen the Rheumatologist he asked me why as a 22 year old I went to the doctor. I told him I couldn’t pick my feet up to get into my truck. I had to hang onto the drip rail and the top of the door and pull myself up, then help pull up my legs with my hands.
So those Pre Med students would sit there and read through my chart and ask me about my symptoms of Wegener’s and see my initial complaint.
In 2012 my Kidney doctor was leaving the clinic and I had no issues with the Wegener’s since 2004 or 5 my C-ANCA had gone away, My kidney function was normal and I was just on blood pressure meds. So I got referred to an Internal Med doctor in the town where I live.
Now in Early August 2014 my C-ANCA test has come backpositive, luckily low 1:20 but it’s enough for me to go see my Rheumatologist again for the first time in a decade. I’m hoping that I won’t need to go back on any medication but I know I was told 14 years ago that if it would become inactive I could have a flare up at any time as there is no cure only treatments.
And that’s how I came about finding this website as I was doing some research on this disease that I have tried to not think too much about but always wondering when it would show up again.
I just found this forum a few weeks ago, I was told I had Wegener’s back in December of 2000 when I was 22.
My story is I didn’t feel good for a lot of the last half of 2000 and was getting weak to where it was hard to get out of a chair or into a vehicle, I hadn’t seen a doctor for anything in years other than a pre-employment screen a few years earlier. In Mid-November I seen a local doctor, he didn’t know what was wrong just that I had a high white cell count. Thanksgiving weekend at my parents I woke up in the recliner late in the evening in a lot of pain and my mom took me to the ER. The doctor there said I had Pinkeye and Pleurisy. He was half right; I did have the pleurisy but not pinkeye. After acouple days on Tylenol 3 I still wasn’t better and seen my new local doctor again. At this point I was having a lot of blood in my urine and could hardly pick my feet up. I had lots of red spots appearing on my legs and what looked like bruises under all my finger nails. My eyes were so bloodshot I didn’t have a lot of white left showing. I was constantly blowing my nose like I had a cold every day. My joints hurt to the point it hurt to stand up or even pick up a glass without discomfort. When I would sleep I would soak the pillow and sheets with sweat. Anything I would try to eat or drink I couldn’t keep it down and as a result I was losing a lot of weight.
Fortunately on the second office visit he referred me to a Rheumatologist that worked me in the next afternoon due to my health. From there I spent a few weeks in the hospital feeling like a lab rat. My lungs were getting worse and I started spitting up some blood, my kidneys weren’t doing very good and they talked to me about possible dialysis if things didn’t improve, I ended up getting muscle and nerve biopsy done on my leg, Skin biopsy of the red spots on my other leg, lung biopsy, and countless blood draws. After about aweek and half the labs came back that I had positive C ANCA and that it was very high, I don’t remember the numbers anymore. I do remember getting 250mg of injected prednisone every 12 hours for two or three days. And I was on 175mg of Cytoxan with 80mg of prednisone daily after discharge.
I also got diagnosed with Raynaud syndrome while in the hospital, for some time before all this I had some issues with fingers and toes getting cold, but during this winter after discharged from the hospital a couple fingers on either hand would turn white after a couple minutes outside. Over the years it has gotten better but my ring finger on my right hand will go numb rather quickly but it takes a while before it turns white.
6 weeks went by after discharge seeing a lung doctor, rheumatologist, and kidney doctors on a very regular basis. My strength had returned fairly well And then I got released to go back to work, for two days, Then I ended up with a DVT (blood clots in my left calf).
So now I got to add an Internist to the mix to take care of my Coumadin at which I ended up on 12.5mg of daily.
I think I was on treatment with the Cytoxan and prednisone for 2-1/2 to 3 years before I was taken off of it with still a low positive C-ANCA. So it has been a good 10-11years since I have seen my Rheumatologist as I seen my Kidney specialist for blood pressure meds and to monitor my kidney function.
After about 3 years my kidney doctor loved to have Pre Med students see me whenever there was one in the clinic while I had an appointment. He also told me that he used my case (without my name ) when he would teach at a college due to the rarity of the disease.
In my chart from when I first seen the Rheumatologist he asked me why as a 22 year old I went to the doctor. I told him I couldn’t pick my feet up to get into my truck. I had to hang onto the drip rail and the top of the door and pull myself up, then help pull up my legs with my hands.
So those Pre Med students would sit there and read through my chart and ask me about my symptoms of Wegener’s and see my initial complaint.
In 2012 my Kidney doctor was leaving the clinic and I had no issues with the Wegener’s since 2004 or 5 my C-ANCA had gone away, My kidney function was normal and I was just on blood pressure meds. So I got referred to an Internal Med doctor in the town where I live.
Now in Early August 2014 my C-ANCA test has come backpositive, luckily low 1:20 but it’s enough for me to go see my Rheumatologist again for the first time in a decade. I’m hoping that I won’t need to go back on any medication but I know I was told 14 years ago that if it would become inactive I could have a flare up at any time as there is no cure only treatments.
And that’s how I came about finding this website as I was doing some research on this disease that I have tried to not think too much about but always wondering when it would show up again.