Thoughtgraff
04-20-2010, 02:25 AM
Hello everyone. Glad to be a part of your community.
I most likely had Wegener's for over 3 years before I was diagnosed. In 2006 I had horrible arthritic pain in my feet for about a month in a half while in my last year of college. I was 27 at the time. I blamed it on bad shoes and went on with my life. Over the next three years I'd experience on again/ off again joint pain, but not to any severe degree. then in 2007 I started to develop what would turn out to be a perforated septum. I thought it was just allergies. I've had sinus problems my whole life. I knew I should see and ENT, but kept putting it off. Later in September of 2009 that arthritic pain returned in my feet, which i self diagnosed as plantar fascitis.
That December on a short flight from LA to Sacramento to visit my parents for Christmas I experienced extreme pain in my left ear which didn't stop when the flight was over. My ear continued to hurt over the next few days. The pain enveloped the left side of my face. I suspected it was a middle ear infection. I suffered through Christmas then saw an ENT in Sacramento who gave me some antibiotic drops and sent me on my merry way. My ear started getting better but now I was experiencing extreme all-over joint and skeletal pain. I thought it might be related to my spine so I saw a chiropractor, but the treatments actually seemed to increase my pain. I was near bed ridden in no time and began coughing up bloody sputum. I thought it was influenza so I went to see a general practitioner. She had no idea what was going on, but thought she should call an ambulance and get me to the nearest ER. I decided I would drive to UC Davis Medical Center because they have one of the best ERs in California. I'm glad I did because it saved my life.
At this point my story is pretty similar to other WG patients. I was short of breath and near continually coughing when I got to the ER on Jan 1. After strange x-ray results and revealing CT scan I was admitted to the hospital. I presented rashes and lesions all over my extremities over the next few days. I saw every specialist in the UC Davis system as they tried to diagnose me. After almost a week of tests my lungs were severely hemorrhaging. Because the tissue of the lungs was so inflamed the pulmonologists were unable to do a biopsy of my lungs. My sinus biopsy returned inconclusive. But I was clearly going to die if something wasn't done. The pulmonologists made their best guess and began treatment for WG.
My symptoms immediately retarded once I received a gram of solu-medrol. However there were complications due to intubation. The tube basically created a porthole for infection and I contracted pneumonia in my right lung. The pneumonia was near my heart and the inflammation created pooling around the heart itself. My blood vessels were leaky and the fluid had no where to go causing my blood pressure to drop to near 0. If not for the quick thinking of the MICU attending doctor I would have died. I was infused with something like 6 liters of saline causing severe edema but int the process the pressure in my body was stabilized. I was sedated with morphine for about 2 weeks.
I awoke in the MICU on Jan 22 with a tube down my throat having no idea what had transpired. I had lost 30lbs and could not walk. After another week in the MICU the intubation tube was removed and I was able to get out of bed with limited mobility. Soon after I was moved to a fast-track room where 3 days later I was discharged.
I've been home now for a little over 3 months (obviously) and doing much, much better. I am very, very lucky. A week out of the hospital and I was up and walking without the walker in spite of the 100mg of prednisone I was taking daily. When I saw my pulmonologist, Dr. Kenyan, my x-rays showed my lungs to be nearly healed. There were no signs of granulomas, only some slight scar tissue. My oxygen saturation was at 98%, which was very encouraging, and I had no pain when taking a deep breath. I've taken four doses of cytoxan so far. I seem to respond well to the drugs. Fortunately for me there was only some slight presentation in my kidneys. My creatinine level was 0.65 when I entered the hospital but rose to 1.3 by the time I was discharged. However, I was given large amounts of broad spectrum antibiotics and pain killers while in the hospital, so that's to be expected I suppose.
I'm currently taking these meds:
1500mg monthly cytoxan infusions.
60mg daily prednisone.
100mg daily dapsone.
50mg daily linsinopri.
weekly I take fosamax.
I also take these supplements:
Calcium and vitamin D three times a day.
2 IUs of vitamin D3.
600mg of magnesium in powdered form.
Since being discharged I placed myself voluntarily on a very strict diet to counteract a lot of the GI problems that are associated with both prednisone and cytoxan. I don't eat any dairy, eggs, grains, legumes, night shade plants, or sugar. I also stay away from starchy tubars like sweet potatoes. I drink about a gallon of water a day and about 2 when I take my cytoxan treatments. Because of this I haven't experienced the severe weight gain many report while on prednisone. Avoiding the glucose from eating starchy and dense carbohydrate foods like potatoes and bread has kept my blood sugar relatively low around 86-90, so I don't think I'll have to worry about induced diabetes.
There's another reason for the strict diet. While doing research on the subject of autoimmune diseases my brother and I came upon new research into the connection between diet and autoimmune disease. Currently most doctors and WG specialists don't see diet as having anything to do with WG. However there have been several studies that show that both MS and rheumatoid arthritis can be put into remission through diet alone. And, seeing as the underlying disease process that causes the inflammation to occur in all autoimmune diseases are essentially the same, it follows that diet could have a similar impact on WG patients. Here's a pretty informative lecture on this topic by Dr. Loren Cordain - The Paleo Diet and Multiple Sclerosis (MS) (http://bit.ly/8XiCgz)
Well that's my story so far. I turned 31 in February and I'm greatfull for everyday I get to be here. I hope to be a valuable member to the WG community at large and am excited to have other people with WG to converse with. Take care and good health to you all.
I most likely had Wegener's for over 3 years before I was diagnosed. In 2006 I had horrible arthritic pain in my feet for about a month in a half while in my last year of college. I was 27 at the time. I blamed it on bad shoes and went on with my life. Over the next three years I'd experience on again/ off again joint pain, but not to any severe degree. then in 2007 I started to develop what would turn out to be a perforated septum. I thought it was just allergies. I've had sinus problems my whole life. I knew I should see and ENT, but kept putting it off. Later in September of 2009 that arthritic pain returned in my feet, which i self diagnosed as plantar fascitis.
That December on a short flight from LA to Sacramento to visit my parents for Christmas I experienced extreme pain in my left ear which didn't stop when the flight was over. My ear continued to hurt over the next few days. The pain enveloped the left side of my face. I suspected it was a middle ear infection. I suffered through Christmas then saw an ENT in Sacramento who gave me some antibiotic drops and sent me on my merry way. My ear started getting better but now I was experiencing extreme all-over joint and skeletal pain. I thought it might be related to my spine so I saw a chiropractor, but the treatments actually seemed to increase my pain. I was near bed ridden in no time and began coughing up bloody sputum. I thought it was influenza so I went to see a general practitioner. She had no idea what was going on, but thought she should call an ambulance and get me to the nearest ER. I decided I would drive to UC Davis Medical Center because they have one of the best ERs in California. I'm glad I did because it saved my life.
At this point my story is pretty similar to other WG patients. I was short of breath and near continually coughing when I got to the ER on Jan 1. After strange x-ray results and revealing CT scan I was admitted to the hospital. I presented rashes and lesions all over my extremities over the next few days. I saw every specialist in the UC Davis system as they tried to diagnose me. After almost a week of tests my lungs were severely hemorrhaging. Because the tissue of the lungs was so inflamed the pulmonologists were unable to do a biopsy of my lungs. My sinus biopsy returned inconclusive. But I was clearly going to die if something wasn't done. The pulmonologists made their best guess and began treatment for WG.
My symptoms immediately retarded once I received a gram of solu-medrol. However there were complications due to intubation. The tube basically created a porthole for infection and I contracted pneumonia in my right lung. The pneumonia was near my heart and the inflammation created pooling around the heart itself. My blood vessels were leaky and the fluid had no where to go causing my blood pressure to drop to near 0. If not for the quick thinking of the MICU attending doctor I would have died. I was infused with something like 6 liters of saline causing severe edema but int the process the pressure in my body was stabilized. I was sedated with morphine for about 2 weeks.
I awoke in the MICU on Jan 22 with a tube down my throat having no idea what had transpired. I had lost 30lbs and could not walk. After another week in the MICU the intubation tube was removed and I was able to get out of bed with limited mobility. Soon after I was moved to a fast-track room where 3 days later I was discharged.
I've been home now for a little over 3 months (obviously) and doing much, much better. I am very, very lucky. A week out of the hospital and I was up and walking without the walker in spite of the 100mg of prednisone I was taking daily. When I saw my pulmonologist, Dr. Kenyan, my x-rays showed my lungs to be nearly healed. There were no signs of granulomas, only some slight scar tissue. My oxygen saturation was at 98%, which was very encouraging, and I had no pain when taking a deep breath. I've taken four doses of cytoxan so far. I seem to respond well to the drugs. Fortunately for me there was only some slight presentation in my kidneys. My creatinine level was 0.65 when I entered the hospital but rose to 1.3 by the time I was discharged. However, I was given large amounts of broad spectrum antibiotics and pain killers while in the hospital, so that's to be expected I suppose.
I'm currently taking these meds:
1500mg monthly cytoxan infusions.
60mg daily prednisone.
100mg daily dapsone.
50mg daily linsinopri.
weekly I take fosamax.
I also take these supplements:
Calcium and vitamin D three times a day.
2 IUs of vitamin D3.
600mg of magnesium in powdered form.
Since being discharged I placed myself voluntarily on a very strict diet to counteract a lot of the GI problems that are associated with both prednisone and cytoxan. I don't eat any dairy, eggs, grains, legumes, night shade plants, or sugar. I also stay away from starchy tubars like sweet potatoes. I drink about a gallon of water a day and about 2 when I take my cytoxan treatments. Because of this I haven't experienced the severe weight gain many report while on prednisone. Avoiding the glucose from eating starchy and dense carbohydrate foods like potatoes and bread has kept my blood sugar relatively low around 86-90, so I don't think I'll have to worry about induced diabetes.
There's another reason for the strict diet. While doing research on the subject of autoimmune diseases my brother and I came upon new research into the connection between diet and autoimmune disease. Currently most doctors and WG specialists don't see diet as having anything to do with WG. However there have been several studies that show that both MS and rheumatoid arthritis can be put into remission through diet alone. And, seeing as the underlying disease process that causes the inflammation to occur in all autoimmune diseases are essentially the same, it follows that diet could have a similar impact on WG patients. Here's a pretty informative lecture on this topic by Dr. Loren Cordain - The Paleo Diet and Multiple Sclerosis (MS) (http://bit.ly/8XiCgz)
Well that's my story so far. I turned 31 in February and I'm greatfull for everyday I get to be here. I hope to be a valuable member to the WG community at large and am excited to have other people with WG to converse with. Take care and good health to you all.