Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 Hell, Jane, I'M mad and want answers too! It's so frustrating and I know we've run out of options of the RA unless something new is approved soon. It scares me! Sounds like you've finally found an excellent doctor who's goal is to get you out of pain as fast as possible and to make you comfortable. Oh my God! Imagine a doctor wanting to do that????? Congrats on your find! Hang onto him with both hands! When my neuro and I discussed our common rheumy (he recently moved to New York and decided to return here... remember THAT tragedy???) well my neuro says if he moves again, we'll ride to New York together for our appointments! I was ready to go to Florida every month when he was considering a move there! I think he just pulls these stunts to check my nerves and my blood pressure! 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 17, 2003 Report Share Posted August 17, 2003 Christy and Jane, I've found that the combination of prednisone and Arava work for my RA pain. Have you tried that/ I know it's fairly drastic but it has certainly made my life more bearable. RobynChristy wrote: Hell, Jane, I'M mad and want answers too! It's so frustrating and I know we've run out of options of the RA unless something new is approved soon. It scares me! Sounds like you've finally found an excellent doctor who's goal is to get you out of pain as fast as possible and to make you comfortable. Oh my God! Imagine a doctor wanting to do that????? Congrats on your find! Hang onto him with both hands! When my neuro and I discussed our common rheumy (he recently moved to New York and decided to return here... remember THAT tragedy???) well my neuro says if he moves again, we'll ride to New York together for our appointments! I was ready to go to Florida every month when he was considering a move there! I think he just pulls these stunts to check my nerves and my blood pressure! 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 18, 2003 Report Share Posted August 18, 2003 The only thing I have not tried is Arava and that's because it goes through your liver and I can't have that. The prednisone I think all of have done at one time or another and it's a terrible thing to rely on. What dosage are you at on the prednisone? I've been up to 40 mg a day and I've gotten down (FINALLY) to 3 mg a day. OK between 3 and 5, some days I do 5 still, but I'm working on it! Anything below 3 (even 2.5 and I flare.) 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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