RPylican
05-10-2010, 01:00 AM
Hi Everyone ~ I can't tell you how happy I am to find this website. I was just diagnosed with Wegeners in April 2010 and have been trying to educate myself as much as possible since then. While the medical descriptions of this disease and it's treatments on the web are very helpful, and my specialists have been fantastic with the informaiton they have provided me, I do not personally know of anyone with WG so it's nice to connect with others that are experiencing some of the same things I am.
My story is better than most because we caught my WG so early. I am 45 years old and, about 8-10 months ago I started noticing pain in some of my joints that would flare up for a couple days and then disapear. By January my knees and feet started hurting so bad on a daily basis that I walked around with a limp all the time and everyone was asking me what I had done to myself. I was also experiencing severe cramping and stiffness in my muscles, especially my calfs. I finally went to my doctor when I had some time, although not during a severe flare up, and his first thought was arthritis so he took x-rays of my legs and feet but found my joints in perfect condition. He put me on Indmethacin and gave me Percocet for the pain but told me that, if it did not help to return. I didn't take the medication because it upset my stomach and, even though I still had muscle and joint pain, I just dealt with it, thinking that I just needed to get myself in better shape. The pain wasn't so bad in the morning but was so bad at the end of the day, that I just sat in a chair and cried, thinking I couldn't live in this much pain but not knowing what to do because it just didn't make sense. I was exhausted all the time. The first week in March I went to the Mountains on a girls retreat weekend and my left foot started swelling up over a couple of days. My doctor told me to get to the ER to rule out a blood clot, which I did, and there was no blood clot. I returned to my retreat and the next day my right foot started to swell. I left that day and that night when I got home my right hand swelled up and was in terrible pain. The next morning I went back to my Dr., who took x-rays but also referred me to a Ruematoligist. I was able to get in within a week and, while the initial bloodwork that my regular Dr. ordered showed a Ruematoid factor present, she knew that all of the bloodwork and symtoms did not point toward Ruematoid Arthritis. She said she believed it was autoimmune but didn't know what so she ordered a full scope of lab work, including blood and urine, to find out what it was. She also put me on, and weaned me off, a low dose of prednisone for 12 days which did help my symptoms. When I returned the following week she told me that it looked like Wegeners and was referring me to a Nephrology Specialist. She also sent me for a lung x-ray that day. Within 10 days I had my first appt with with the Nephrology Specialist and by the 15th of April I had a Kidney biopsy, which confirmed my WG. Fortunely my lung x-ray showed no effects of the Wegener's in my lungs so far.
Originally my Nephrology Specialist started me on 40mg of Prednisone a day, which made me feel like a new person. It relieved my muscle and joint pain dramatically and gave me more energy than I'd had in a year! Once the diagnosis was confirmed though my biopsy he lowered my Prednisone to 20mg a day and put me on 50mg of Cyclophosphamide a day as well as Bactrim 3x a week. So far I'm not experiencing many side effects from the medication other than some acne from the Predisone. His plan is to try to get me off the Cyclophosphamide within 3 - 6 months and put me on Imuran. Since he lowered the Prednisone I do notice some tightness in my leg muscles, occasional slight joint pain and muscle cramps in my feet but nothing compared to what I had before. I can even walk the dog again!
I am very lucky because they caught my WG so early. Besides my Kidney, the only other area that the WG seems to have shown up is in my nose where I have some sores and bleeding that have not cleared up. Both of my specialists are fantastic and have explained what they know about Wegener's in so much detail that I find it hard to even think of questions when I visit them. They also encourage me to call anytime and have me scheduled for appointments every 6 weeks at this point.
I'm sorry this is so long but it is so nice to have someone out there that understands this, and can talk to me from my point of view. I have a very supportive family who takes good care of me but it's just nice to connect to others facing the same challenges as I am.
Thanks for letting me share and I'm sure I'll be talking to all of you regularly.
My story is better than most because we caught my WG so early. I am 45 years old and, about 8-10 months ago I started noticing pain in some of my joints that would flare up for a couple days and then disapear. By January my knees and feet started hurting so bad on a daily basis that I walked around with a limp all the time and everyone was asking me what I had done to myself. I was also experiencing severe cramping and stiffness in my muscles, especially my calfs. I finally went to my doctor when I had some time, although not during a severe flare up, and his first thought was arthritis so he took x-rays of my legs and feet but found my joints in perfect condition. He put me on Indmethacin and gave me Percocet for the pain but told me that, if it did not help to return. I didn't take the medication because it upset my stomach and, even though I still had muscle and joint pain, I just dealt with it, thinking that I just needed to get myself in better shape. The pain wasn't so bad in the morning but was so bad at the end of the day, that I just sat in a chair and cried, thinking I couldn't live in this much pain but not knowing what to do because it just didn't make sense. I was exhausted all the time. The first week in March I went to the Mountains on a girls retreat weekend and my left foot started swelling up over a couple of days. My doctor told me to get to the ER to rule out a blood clot, which I did, and there was no blood clot. I returned to my retreat and the next day my right foot started to swell. I left that day and that night when I got home my right hand swelled up and was in terrible pain. The next morning I went back to my Dr., who took x-rays but also referred me to a Ruematoligist. I was able to get in within a week and, while the initial bloodwork that my regular Dr. ordered showed a Ruematoid factor present, she knew that all of the bloodwork and symtoms did not point toward Ruematoid Arthritis. She said she believed it was autoimmune but didn't know what so she ordered a full scope of lab work, including blood and urine, to find out what it was. She also put me on, and weaned me off, a low dose of prednisone for 12 days which did help my symptoms. When I returned the following week she told me that it looked like Wegeners and was referring me to a Nephrology Specialist. She also sent me for a lung x-ray that day. Within 10 days I had my first appt with with the Nephrology Specialist and by the 15th of April I had a Kidney biopsy, which confirmed my WG. Fortunely my lung x-ray showed no effects of the Wegener's in my lungs so far.
Originally my Nephrology Specialist started me on 40mg of Prednisone a day, which made me feel like a new person. It relieved my muscle and joint pain dramatically and gave me more energy than I'd had in a year! Once the diagnosis was confirmed though my biopsy he lowered my Prednisone to 20mg a day and put me on 50mg of Cyclophosphamide a day as well as Bactrim 3x a week. So far I'm not experiencing many side effects from the medication other than some acne from the Predisone. His plan is to try to get me off the Cyclophosphamide within 3 - 6 months and put me on Imuran. Since he lowered the Prednisone I do notice some tightness in my leg muscles, occasional slight joint pain and muscle cramps in my feet but nothing compared to what I had before. I can even walk the dog again!
I am very lucky because they caught my WG so early. Besides my Kidney, the only other area that the WG seems to have shown up is in my nose where I have some sores and bleeding that have not cleared up. Both of my specialists are fantastic and have explained what they know about Wegener's in so much detail that I find it hard to even think of questions when I visit them. They also encourage me to call anytime and have me scheduled for appointments every 6 weeks at this point.
I'm sorry this is so long but it is so nice to have someone out there that understands this, and can talk to me from my point of view. I have a very supportive family who takes good care of me but it's just nice to connect to others facing the same challenges as I am.
Thanks for letting me share and I'm sure I'll be talking to all of you regularly.