Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Christy, Just a quick note to send hugs & prayers. How much Prozac are you taking now? I'm on 80 mgs. a day right now. -- sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 I take 40 mgs a day. I was on 80 and then went down to 60 a few years ago and finally down to 40 last year. I thought I was doing so well but I really feel the need to go back up but doc would rather try to get my body straight instead of just helping me deal with it not working. I guess it's ok but right now I question his choice. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Christy, my heart is aching for you. Once again, my premonition about someone on the list is panning out. I just knew in my head that something was going on with you. You're usually not so AWOL from the list. I am so sorry that the doctor's appt was so depressing. How long will it take for you to get approval from your insurance company to try the Arava? If nothing else is working, why not give it a try. I know you said it is bad for the liver but if you are so miserable anyway and your sed rate is so high, I would seriously consider anything. I think you will find that a lift chair will be much more useful and comfortable than a standard recliner. My aunt has one and she says she doesn't know how she did without it. I'm thinking that that would be a good gift for my Mom for Christmas. I hope you can find a lift chair you like soon. I know you spend so much time in your chair in your LR now and having this would make things even more pleasant. Is there anything that I could do for you that would make life more pleasant? Your wish is my command...if I can manage it. Ask your pain doc about trying Actiq which is a fentanyl sucker that gets into your blood stream quickly when you use it. The 400 mcg ones were strong enough for me but when I went to 800 mcg., I can feel it starting to act on the pain. The only thing is I think I actually need something like maybe a 600 mcg. because it sometimes makes me a little loopy so I'll never be using them when I'm going to be leaving the condo. The other thing is the Duragesic patches. I use the 100's and can definitely tell when I don't have one on. I'm praying for you...and Ronnie and . They love you so much so I know they are also praying for a solution for you. Prayers being said, Love, Jane Message ----- From: Christy To: autoimmune-ills Sent: Tuesday, August 12, 2003 4:02 PM Subject: sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Christy, I'm sending all my postive energry to you. Lots of hugs being sent too, gentle ones of course. You'll beat this! And yes, we're hear for all the support you need. x0x0x0 Shirley -- sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 That dog can always cheer me up!! Thanks Shirls. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 I thought he'd make you smile! x0x0x0 Shirley -- Re: sucky day That dog can always cheer me up!! Thanks Shirls. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Oh, Christy! I'm so sorry to hear all this! First of all--take the increase in Prozac. You're already on it and the increase will help--you take whatever will help. So what's the next step with the lung tumor? The lift chairs are wonderful! I've had alot of patient's with them, and right now we still have one in our living room. It had been Denny's Granny's and we got it when he had his hip replacement done. Some days I use the lift feature alot. If the insurance doesn't approve the weekly Humira, how much would it cost? Why can't you go higher on the Lasix? Has he tried any other diuretics? We're here for you! (((hugs))) Kathy sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 OK next on the lung tumor is to go BACK to the pulmonologist (it has grown since I saw him ummmmm 3 months ago) and see what we need to do. He wanted to remove it last time but we decided to watch it for 6 more months instead. Humira is about $1400 per injection. Not likely I'm going to go that one alone. Lasix: because of the tumor on my kidney, he doesn't want to get into dehydration problems or anything else there if we can help it. Plus, with the increased sed rate, etc. he thinks the swelling may not be all edema as it appears. It could be "carry over" from the joint swelling and the nerve and muscle problems and he's rather focus on getting them cleared up but he doesn't know what else we can try. Thanks Kathy! sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 You're welcome. Well--you watched it, it grew. When's your Pulmonologist appt? I know you don't want to, but surgery seems to be on your agenda. Oh that's right--the Humira is in the cost league with Denny's meds. Well, you should be able to fight the insurance if they initially refuse, hope they don't 'cause that's always a PITA. Kathy sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Ah Christy - That bites the big one! Whine away sweetie, I've got the cheese. Sucky news, I'm glad you have a doc who will be so honest with you. Try to quit crying, it'll only make your nose stop up and your eyes puffy! Least ways that's what tells me, lol. I Pray that the pain management doc can help, you (the whole group) are always in my Prayers!. Love and lots and lots of hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Excuse me if this is a dumb question but is it possible that the effects of the lung tumor might be causing the sed rate to soar? sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Christy, it's time for you to bring out the wine. Treat yourself on me. It's non-alcoholic, folks! I usually take her a bottle or two whenever I'm going her way because she can't get the brand she likes in GA. Jane RE: sucky day Ah Christy - That bites the big one! Whine away sweetie, I've got the cheese. Sucky news, I'm glad you have a doc who will be so honest with you. Try to quit crying, it'll only make your nose stop up and your eyes puffy! Least ways that's what tells me, lol. I Pray that the pain management doc can help, you (the whole group) are always in my Prayers!. Love and lots and lots of hugs, Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 I don't have an appt yet, the rheumy was going to make it for me but first we have to decide about my meds and I go to the doc about my nerve study in the morning. Every time I go to the doctors, it's like starting over... here we go again with another dozen doctors appointments and I am so tired of it! I'm running in circles! sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Thank you Birthday girl but this is YOUR day, not the day to worry about me! How's it going? RE: sucky day Ah Christy - That bites the big one! Whine away sweetie, I've got the cheese. Sucky news, I'm glad you have a doc who will be so honest with you. Try to quit crying, it'll only make your nose stop up and your eyes puffy! Least ways that's what tells me, lol. I Pray that the pain management doc can help, you (the whole group) are always in my Prayers!. Love and lots and lots of hugs, Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Thank you Jane. Just knowing you're saying a special prayer for me is more than enough. I can't use the patches because the pain is in too many different locations. We've discussed that. I will ask about the Actiq. We have to come up with something!!! Thank you. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 nope.... we've discussed that. It's not swelling or inflammation. That would be nice though: take care of all of it at one time! sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 LOL I've had one bottle stashed away because I had a fear of running out LOL It's coming out tonight! Excellent idea Jane! And again, thank you so much for being my supplier! hehehe RE: sucky day Ah Christy - That bites the big one! Whine away sweetie, I've got the cheese. Sucky news, I'm glad you have a doc who will be so honest with you. Try to quit crying, it'll only make your nose stop up and your eyes puffy! Least ways that's what tells me, lol. I Pray that the pain management doc can help, you (the whole group) are always in my Prayers!. Love and lots and lots of hugs, Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 The Lidoderm patch is applied to where it hurts but the Duragesic patch is placed in one spot for usually 3 days. Most of the time I have my on the back of my shoulder. It is one that is absorbed slowly into the blood stream and I can certainly tell if I have forgotten to change it or have taken it off and forgotten to add a new one. Talk to him about this. It actually works better for me than the Actiq but the Actiq is for breakthrough pain. I hope you can get some relief and some answers tomorrow when you go to the doctor. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 What else would be causing the sed rate to soar like that then if it isn't inflammation? Jane sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Let us know how it goes. You're in my prayers. I'm leaving today at 11 so will be off line until Sunday. Kathy sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Christy--the duragesic patches are Fentanyl and get absorbed into your system and take care of pain wherever it is. I think you're thinking of the lidocaine patches which are a local thing and only help what are they are on. We used the Duragesic patches alot on CA patients with good results. Kathy sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 I think she meant the lung tumor isn't just swelling or inflammation? Kathy sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 No, I meant the tumor isn't swelling or inflammation.... no changes in the surrounding areas... the sed rate IS caused my inflamation. Sorry, that was really unclear. sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Then I guess I am still confused...what is causing the sed rate to soar..which AI or other DD. I don't like it when I can't get answers...not mad at you...just mad at your situation. BTW, I went to see my pain doc this morning and he wanted to know if I was getting any relief from the IV infusions. I told him I haven't noticed any yet but I have only had 4 of them. He wanted to know if I wished to try another approach which could eventually end up with implantation of a pain pump...so that there is instant absorption of the meds into the blood stream rather than like the patches do which take longer. We are going to reevaluate after I get back from vacation...either continuing for a while longer with the IV's (which will probably be my first choice at least for a while) and if that doesn't produce the results I want or need, then we'll try the next step. I can't believe that he is so inquisitive and open-minded about trying one thing after another to reach a solution...I guess he seems too good to be true. What did your doc say yesterday? I am a full day behind on emails because I had so many otehr things to do yesterday and today I should be packing and cleaning the condo...energy permitting. I awoke during the night (about 2 AM) and my computer was on the bed between my legs (I usually set it on something and then more or less wrap my legs around it so it can't get knocked off the bed.) I didn't realize I was so sleepy when I picked the computer up so tonight I have to be more careful. Hope to catch up on reading emails later today. Jane sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Then I guess I am still confused...what is causing the sed rate to soar..which AI or other DD. I don't like it when I can't get answers...not mad at you...just mad at your situation. BTW, I went to see my pain doc this morning and he wanted to know if I was getting any relief from the IV infusions. I told him I haven't noticed any yet but I have only had 4 of them. He wanted to know if I wished to try another approach which could eventually end up with implantation of a pain pump...so that there is instant absorption of the meds into the blood stream rather than like the patches do which take longer. We are going to reevaluate after I get back from vacation...either continuing for a while longer with the IV's (which will probably be my first choice at least for a while) and if that doesn't produce the results I want or need, then we'll try the next step. I can't believe that he is so inquisitive and open-minded about trying one thing after another to reach a solution...I guess he seems too good to be true. What did your doc say yesterday? I am a full day behind on emails because I had so many otehr things to do yesterday and today I should be packing and cleaning the condo...energy permitting. I awoke during the night (about 2 AM) and my computer was on the bed between my legs (I usually set it on something and then more or less wrap my legs around it so it can't get knocked off the bed.) I didn't realize I was so sleepy when I picked the computer up so tonight I have to be more careful. Hope to catch up on reading emails later today. Jane sucky day I'm going to hide under the covers for the rest of the week. Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since. The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!! We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished. The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then! We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older. OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok. I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand! Christy Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
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