Empty bucket
03-31-2010, 04:48 PM
Hello everyone. My first post. I've been lurking for a month or so and decided to jump in. My name is Dusty. I live on the Mississippi River in Sunshine LA. This is just south of Baton Rouge. I am a 56 year old male. I was diagnoised in May 2008. Prior to my diagnoisis, I was wide open in everything I did. That is why my bucket is empty if you know what I mean.
Here we go. I started feeling bad and simply out of sorts in the summer of 2007. My sinuses were giving me trouble. I did not have allergies or sinus problems prior to this. I went to my GP several times until January 2008. During this period I was given meds for sinus infections. The problems not only persisted they actually worsened. My GP referred me to an ENT in Baton Rouge. The ENT ordered a CT of my sinuses, but scheduled surgery on my first appt. He said if by chance there was major improvement, he would cancel the surgery. The results were bad so I was prescribed heavy does of antibiotics; he wanted the sinuses as clean as possible before surgery. Things continued to go downhill. I had surgery on April 1, 2008. He said if ever anyone needed sinus surgery I sure did. After surgery he informed my wife that the surgery went well but something was growing so he had taken several cultures. I was back home that afternoon. I felt OK for a few days then things started going downhill again. When I went for my post-op visit, I could barely walk into the building, pain in my knees and my head felt like it was going to explode. This continues for six weeks, my ENT continues to say that we just did not realize how bad my sinuses were and it would take a while to heal. My wife knew that this was not normal and made an appointment with my GP for a physical. She insisted on going with me, she felt that this doctor knew me and would listen. She also told him that one of my sisters had lupus. He orders extensive bloodwork. The results showed markers of RA. I was then referred to Rheumy, which would be a couple of months.
Meanwhile back to ENT, by now my wife knows this is not just a SINUS INFECTION, we ask about the results of the culture that is pending, all others were negative. ENT said the pending culture was negative. By now, I cannot hear and I have an eye infection. I tell my ENT that I never understood how anyone could be in so much pain that they would take their own life, but I could now see how it might happen. He said he had a friend who was a psychiartrist and wanted to know if I wanted to see him. My wife had to control me, but that was coupe de grais. He sends me to an infusion center for a pic line. After insertion I had to go for an x-ray to be sure it was in the right place. It was. A few days later, I am back at the ENT. He wants to know if I am aware of the nodules on my lungs. Well no I wasn't so he ordered another CT. He was out of town for a week. His nurse called and wanted me to start prednisone,another ENT in the practice had ordered the prednisone after reviewing the CT report. My wife did not fill the script because regular ENT said to stop the prednisone.
Alarms are going off everywhere. Our niece who is a nurse is coming by and she is very concerned - she goes home and tells her mother that I will die if something is not done soon. She and her daughter, who is also a nurse come again. They want me to go to the emergency room, but I am too sick. My wife is doing a lot to research and has decided I should go to the Mayo Clinic . Our niece comes again and convinces me that I have to do something because I am definitely not getting better. She said they are going to make the arrangements. I am so sick, I said let me see ENT one more time and anyway I needed to get the pic line out. She informed me that I would need the pic line whereever I went. (Her father had just died and she was not going to let me die.)
Emotions are fragile by now, I can not hear, my eye is bulging and my head is in constant pain. Someone calls a friend of mine who is a doctor in Kansas. He calls my wife and after much discussion, he tells her to get ENT doc to send him a copy of my records. He reads the reports and discovered a note from the pathologist that reads "Wegeners needs to be considered" but my ENT didn't read that or missed it.
My ENT's nurse calls early the morning of my appt and wants to know if I have been taking the prednisone. My wife told her she had not filled the script because my regular ENT had told me to stop taking it. The nurse wants me to go for another CT and my wife blew up. She said I was in so much pain I could barely walk and we were coming to pick up my records and go somewhere to get a diagnosis. The nurse said to come in now, we would not have to wait. I see ENT and he agreed I needed to be hospitalized. I was admitted that afternoon and three days later I was diagnoised with WG. I spend 7 days in hospital, have another sinus surgery and tubes in my ears while in the hospital. I am prescribed IV preds and ctx. In addition to ENT, I am assigned a rheumy and a plumony. The journey begins.
Summary of treatment to date:
sent home on 50 mg preds and 50 mg ctx. Improvement begins in about two months. Begin tapering the preds to 0 in 4 months. Increased ctx to 200 mg. Bactrim 3X per week. Sinus problems continue but am basically feeling OK. Got pneumonia mid Dec. Treated and recovered.Back on ctx in Jan. 09. Feeling OK, no pain just sinus problems. Switch to Imuran Feb. 09. Allerigic reaction. Back on ctx 250 mg and 20 mg pred. March 09.Tapered off preds in 1 month. Been on ctx 100-250 to date.
According to my rhuemy my anca levels were off the chart when I was in the hospital. In four months time under his care it was negative. The positive anca levels returned after I was not able to take Imuran. They remained low and I felt OK. My "Limited Wegener's" has been managed with very little preds. Ctx seems to work, but it is getting the best of me now. I have taken it for almost 2 years. I should own stock in bottled water industry.
Here comes the big question. For the past month, I have been prepped for my first infusion of rtx. It is scheduled for 4/5/10. Do the benefits of rtx outweigh the risks? Should I be worried about PML, my rheumy isn't.
Thanks for listening.
One more thing, if it wasn't for my wife I would not be here.
Here we go. I started feeling bad and simply out of sorts in the summer of 2007. My sinuses were giving me trouble. I did not have allergies or sinus problems prior to this. I went to my GP several times until January 2008. During this period I was given meds for sinus infections. The problems not only persisted they actually worsened. My GP referred me to an ENT in Baton Rouge. The ENT ordered a CT of my sinuses, but scheduled surgery on my first appt. He said if by chance there was major improvement, he would cancel the surgery. The results were bad so I was prescribed heavy does of antibiotics; he wanted the sinuses as clean as possible before surgery. Things continued to go downhill. I had surgery on April 1, 2008. He said if ever anyone needed sinus surgery I sure did. After surgery he informed my wife that the surgery went well but something was growing so he had taken several cultures. I was back home that afternoon. I felt OK for a few days then things started going downhill again. When I went for my post-op visit, I could barely walk into the building, pain in my knees and my head felt like it was going to explode. This continues for six weeks, my ENT continues to say that we just did not realize how bad my sinuses were and it would take a while to heal. My wife knew that this was not normal and made an appointment with my GP for a physical. She insisted on going with me, she felt that this doctor knew me and would listen. She also told him that one of my sisters had lupus. He orders extensive bloodwork. The results showed markers of RA. I was then referred to Rheumy, which would be a couple of months.
Meanwhile back to ENT, by now my wife knows this is not just a SINUS INFECTION, we ask about the results of the culture that is pending, all others were negative. ENT said the pending culture was negative. By now, I cannot hear and I have an eye infection. I tell my ENT that I never understood how anyone could be in so much pain that they would take their own life, but I could now see how it might happen. He said he had a friend who was a psychiartrist and wanted to know if I wanted to see him. My wife had to control me, but that was coupe de grais. He sends me to an infusion center for a pic line. After insertion I had to go for an x-ray to be sure it was in the right place. It was. A few days later, I am back at the ENT. He wants to know if I am aware of the nodules on my lungs. Well no I wasn't so he ordered another CT. He was out of town for a week. His nurse called and wanted me to start prednisone,another ENT in the practice had ordered the prednisone after reviewing the CT report. My wife did not fill the script because regular ENT said to stop the prednisone.
Alarms are going off everywhere. Our niece who is a nurse is coming by and she is very concerned - she goes home and tells her mother that I will die if something is not done soon. She and her daughter, who is also a nurse come again. They want me to go to the emergency room, but I am too sick. My wife is doing a lot to research and has decided I should go to the Mayo Clinic . Our niece comes again and convinces me that I have to do something because I am definitely not getting better. She said they are going to make the arrangements. I am so sick, I said let me see ENT one more time and anyway I needed to get the pic line out. She informed me that I would need the pic line whereever I went. (Her father had just died and she was not going to let me die.)
Emotions are fragile by now, I can not hear, my eye is bulging and my head is in constant pain. Someone calls a friend of mine who is a doctor in Kansas. He calls my wife and after much discussion, he tells her to get ENT doc to send him a copy of my records. He reads the reports and discovered a note from the pathologist that reads "Wegeners needs to be considered" but my ENT didn't read that or missed it.
My ENT's nurse calls early the morning of my appt and wants to know if I have been taking the prednisone. My wife told her she had not filled the script because my regular ENT had told me to stop taking it. The nurse wants me to go for another CT and my wife blew up. She said I was in so much pain I could barely walk and we were coming to pick up my records and go somewhere to get a diagnosis. The nurse said to come in now, we would not have to wait. I see ENT and he agreed I needed to be hospitalized. I was admitted that afternoon and three days later I was diagnoised with WG. I spend 7 days in hospital, have another sinus surgery and tubes in my ears while in the hospital. I am prescribed IV preds and ctx. In addition to ENT, I am assigned a rheumy and a plumony. The journey begins.
Summary of treatment to date:
sent home on 50 mg preds and 50 mg ctx. Improvement begins in about two months. Begin tapering the preds to 0 in 4 months. Increased ctx to 200 mg. Bactrim 3X per week. Sinus problems continue but am basically feeling OK. Got pneumonia mid Dec. Treated and recovered.Back on ctx in Jan. 09. Feeling OK, no pain just sinus problems. Switch to Imuran Feb. 09. Allerigic reaction. Back on ctx 250 mg and 20 mg pred. March 09.Tapered off preds in 1 month. Been on ctx 100-250 to date.
According to my rhuemy my anca levels were off the chart when I was in the hospital. In four months time under his care it was negative. The positive anca levels returned after I was not able to take Imuran. They remained low and I felt OK. My "Limited Wegener's" has been managed with very little preds. Ctx seems to work, but it is getting the best of me now. I have taken it for almost 2 years. I should own stock in bottled water industry.
Here comes the big question. For the past month, I have been prepped for my first infusion of rtx. It is scheduled for 4/5/10. Do the benefits of rtx outweigh the risks? Should I be worried about PML, my rheumy isn't.
Thanks for listening.
One more thing, if it wasn't for my wife I would not be here.