Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I never took a loading dose when I was on Arava. I took arava for a year. Never had any problems or changes in liver enzymes. Good luck I hope you find a doc that can help you. Toni In a message dated 7/13/05 11:37:06 P.M. Central Daylight Time, writes: Date: Wed, 13 Jul 2005 23:13:23 -0400 From: Sue <marysue@...> Subject: Re: Another Arava update Dennis, I wish you could get better doctors. Keep working on it. The normal loading dose for Arava is three high doses. My rheumy said that since I had been on methotrexate, I should just take two. You CAN believe some things on the Internet. I try to educate myself about my diseases to keep my doctors on their toes. I always get my lab results so that I can see the numbers for myself. If I don't understand something on there, I look it up. I like to know what's going on in my body. So at least start asking for copies of your lab results. Good luck getting it all sorted out. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I never took a loading dose when I was on Arava. I took arava for a year. Never had any problems or changes in liver enzymes. Good luck I hope you find a doc that can help you. Toni In a message dated 7/13/05 11:37:06 P.M. Central Daylight Time, writes: Date: Wed, 13 Jul 2005 23:13:23 -0400 From: Sue <marysue@...> Subject: Re: Another Arava update Dennis, I wish you could get better doctors. Keep working on it. The normal loading dose for Arava is three high doses. My rheumy said that since I had been on methotrexate, I should just take two. You CAN believe some things on the Internet. I try to educate myself about my diseases to keep my doctors on their toes. I always get my lab results so that I can see the numbers for myself. If I don't understand something on there, I look it up. I like to know what's going on in my body. So at least start asking for copies of your lab results. Good luck getting it all sorted out. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, did you take two or three loading doses of Arava at the beginning? I did, and my liver enzymes were elevated then, but they came on back down to normal the next time I had blood work done. How high were yours elevated? My rheumy told me at the time that they don't get worried until the enzymes are double or triple the high normal range. Did they take you off the Arava? If so, what are they going to try next? I'm so sorry that you're having such an awful time getting meds to help and not hurt you. Keep us updated. Sue On Wednesday, July 13, 2005, at 09:36 PM, Dennis W wrote: > I went for a blood test yesterday and got a call from the Rummy today. > I had > been having real problems witht he Arava, extremely sore muscles, > feeling > like crap all day even after taking it at night to avoid upset > stomach,joints hurting more, etc. now my liver enzimes are elevated > after > less than 2 weeks! Last med change my kidneys started acting up and > haven't > recovered after 2 years off my anti-inflammatories. I had bad problems > with > Azulfadine and now with Arava, I don't know what's next but it's not > looking > good so far. What a downer. :{ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, did you take two or three loading doses of Arava at the beginning? I did, and my liver enzymes were elevated then, but they came on back down to normal the next time I had blood work done. How high were yours elevated? My rheumy told me at the time that they don't get worried until the enzymes are double or triple the high normal range. Did they take you off the Arava? If so, what are they going to try next? I'm so sorry that you're having such an awful time getting meds to help and not hurt you. Keep us updated. Sue On Wednesday, July 13, 2005, at 09:36 PM, Dennis W wrote: > I went for a blood test yesterday and got a call from the Rummy today. > I had > been having real problems witht he Arava, extremely sore muscles, > feeling > like crap all day even after taking it at night to avoid upset > stomach,joints hurting more, etc. now my liver enzimes are elevated > after > less than 2 weeks! Last med change my kidneys started acting up and > haven't > recovered after 2 years off my anti-inflammatories. I had bad problems > with > Azulfadine and now with Arava, I don't know what's next but it's not > looking > good so far. What a downer. :{ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 I took no loading dose. I thought that to be unusual based on what I read on the net, but the nurse says not to believe ANYTHING off the net. She didn't give me numbers, but that doesn't matter because they don't seem to care about rules, only what they can torture a person with. When I was taken off anti-inflammatories, there were no other instructions or help. I just had to stop taking them. Then when he raised my MTX to 1.2 cc/week, he didn't raise Folic Acid so my tongue swelled and I lost taste buds except around the edges. I finally found from this group what was going on and called, and she said, " Oh, yeah, start taking 5 mg per day " , just like it was an afterthought and not a problem. I still wish I had another option instead of this pair. I'm still working on that. Dennis Re: [ ] Another Arava update > Dennis, did you take two or three loading doses of Arava at the > beginning? I did, and my liver enzymes were elevated then, but they > came on back down to normal the next time I had blood work done. How > high were yours elevated? My rheumy told me at the time that they don't > get worried until the enzymes are double or triple the high normal > range. Did they take you off the Arava? If so, what are they going to > try next? I'm so sorry that you're having such an awful time getting > meds to help and not hurt you. Keep us updated. Sue > > On Wednesday, July 13, 2005, at 09:36 PM, Dennis W wrote: > >> I went for a blood test yesterday and got a call from the Rummy today. >> I had >> been having real problems witht he Arava, extremely sore muscles, >> feeling >> like crap all day even after taking it at night to avoid upset >> stomach,joints hurting more, etc. now my liver enzimes are elevated >> after >> less than 2 weeks! Last med change my kidneys started acting up and >> haven't >> recovered after 2 years off my anti-inflammatories. I had bad problems >> with >> Azulfadine and now with Arava, I don't know what's next but it's not >> looking >> good so far. What a downer. :{ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 I took no loading dose. I thought that to be unusual based on what I read on the net, but the nurse says not to believe ANYTHING off the net. She didn't give me numbers, but that doesn't matter because they don't seem to care about rules, only what they can torture a person with. When I was taken off anti-inflammatories, there were no other instructions or help. I just had to stop taking them. Then when he raised my MTX to 1.2 cc/week, he didn't raise Folic Acid so my tongue swelled and I lost taste buds except around the edges. I finally found from this group what was going on and called, and she said, " Oh, yeah, start taking 5 mg per day " , just like it was an afterthought and not a problem. I still wish I had another option instead of this pair. I'm still working on that. Dennis Re: [ ] Another Arava update > Dennis, did you take two or three loading doses of Arava at the > beginning? I did, and my liver enzymes were elevated then, but they > came on back down to normal the next time I had blood work done. How > high were yours elevated? My rheumy told me at the time that they don't > get worried until the enzymes are double or triple the high normal > range. Did they take you off the Arava? If so, what are they going to > try next? I'm so sorry that you're having such an awful time getting > meds to help and not hurt you. Keep us updated. Sue > > On Wednesday, July 13, 2005, at 09:36 PM, Dennis W wrote: > >> I went for a blood test yesterday and got a call from the Rummy today. >> I had >> been having real problems witht he Arava, extremely sore muscles, >> feeling >> like crap all day even after taking it at night to avoid upset >> stomach,joints hurting more, etc. now my liver enzimes are elevated >> after >> less than 2 weeks! Last med change my kidneys started acting up and >> haven't >> recovered after 2 years off my anti-inflammatories. I had bad problems >> with >> Azulfadine and now with Arava, I don't know what's next but it's not >> looking >> good so far. What a downer. :{ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I wish you could get better doctors. Keep working on it. The normal loading dose for Arava is three high doses. My rheumy said that since I had been on methotrexate, I should just take two. You CAN believe some things on the Internet. I try to educate myself about my diseases to keep my doctors on their toes. I always get my lab results so that I can see the numbers for myself. If I don't understand something on there, I look it up. I like to know what's going on in my body. So at least start asking for copies of your lab results. Good luck getting it all sorted out. Sue On Wednesday, July 13, 2005, at 10:09 PM, Dennis W wrote: > I took no loading dose. I thought that to be unusual based on what I > read on > the net, but the nurse says not to believe ANYTHING off the net. She > didn't give me numbers, but that doesn't matter because they don't > seem to > care about rules, only what they can torture a person with. When I was > taken > off anti-inflammatories, there were no other instructions or help. I > just > had to stop taking them. Then when he raised my MTX to 1.2 cc/week, he > didn't raise Folic Acid so my tongue swelled and I lost taste buds > except > around the edges. I finally found from this group what was going on and > called, and she said, " Oh, yeah, start taking 5 mg per day " , just like > it > was an afterthought and not a problem. I still wish I had another > option > instead of this pair. I'm still working on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I wish you could get better doctors. Keep working on it. The normal loading dose for Arava is three high doses. My rheumy said that since I had been on methotrexate, I should just take two. You CAN believe some things on the Internet. I try to educate myself about my diseases to keep my doctors on their toes. I always get my lab results so that I can see the numbers for myself. If I don't understand something on there, I look it up. I like to know what's going on in my body. So at least start asking for copies of your lab results. Good luck getting it all sorted out. Sue On Wednesday, July 13, 2005, at 10:09 PM, Dennis W wrote: > I took no loading dose. I thought that to be unusual based on what I > read on > the net, but the nurse says not to believe ANYTHING off the net. She > didn't give me numbers, but that doesn't matter because they don't > seem to > care about rules, only what they can torture a person with. When I was > taken > off anti-inflammatories, there were no other instructions or help. I > just > had to stop taking them. Then when he raised my MTX to 1.2 cc/week, he > didn't raise Folic Acid so my tongue swelled and I lost taste buds > except > around the edges. I finally found from this group what was going on and > called, and she said, " Oh, yeah, start taking 5 mg per day " , just like > it > was an afterthought and not a problem. I still wish I had another > option > instead of this pair. I'm still working on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I'm so sorry that your having a problem with the Arava. I was hoping it would work for you. I pray they will find something that will work for you, hang in there Tawny > I went for a blood test yesterday and got a call from the Rummy today. I had > been having real problems witht he Arava, extremely sore muscles, feeling > like crap all day even after taking it at night to avoid upset > stomach,joints hurting more, etc. now my liver enzimes are elevated after > less than 2 weeks! Last med change my kidneys started acting up and haven't > recovered after 2 years off my anti-inflammatories. I had bad problems with > Azulfadine and now with Arava, I don't know what's next but it's not looking > good so far. What a downer. :{ > > Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Dennis, I'm so sorry that your having a problem with the Arava. I was hoping it would work for you. I pray they will find something that will work for you, hang in there Tawny > I went for a blood test yesterday and got a call from the Rummy today. I had > been having real problems witht he Arava, extremely sore muscles, feeling > like crap all day even after taking it at night to avoid upset > stomach,joints hurting more, etc. now my liver enzimes are elevated after > less than 2 weeks! Last med change my kidneys started acting up and haven't > recovered after 2 years off my anti-inflammatories. I had bad problems with > Azulfadine and now with Arava, I don't know what's next but it's not looking > good so far. What a downer. :{ > > Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Gee Dennis, I wonder if that nurse realizes that the American College of Rheumatology, Mayo, Hopkins and all the rest of the major arthritis organizations all have sites on the web. Maybe if they read more information from the internet, they'd learn how to take care of their patients! Keep working on it. I hope you find other options. a On Jul 13, 2005, at 10:09 PM, Dennis W wrote: > I took no loading dose. I thought that to be unusual based on what I > read on > the net, but the nurse says not to believe ANYTHING off the net. > She > didn't give me numbers, but that doesn't matter because they don't > seem to > care about rules, only what they can torture a person with. When I > was taken > off anti-inflammatories, there were no other instructions or help. I > just > had to stop taking them. Then when he raised my MTX to 1.2 cc/week, > he > didn't raise Folic Acid so my tongue swelled and I lost taste buds > except > around the edges. I finally found from this group what was going on > and > called, and she said, " Oh, yeah, start taking 5 mg per day " , just > like it > was an afterthought and not a problem. I still wish I had another > option > instead of this pair. I'm still working on that. > > Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Gee Dennis, I wonder if that nurse realizes that the American College of Rheumatology, Mayo, Hopkins and all the rest of the major arthritis organizations all have sites on the web. Maybe if they read more information from the internet, they'd learn how to take care of their patients! Keep working on it. I hope you find other options. a On Jul 13, 2005, at 10:09 PM, Dennis W wrote: > I took no loading dose. I thought that to be unusual based on what I > read on > the net, but the nurse says not to believe ANYTHING off the net. > She > didn't give me numbers, but that doesn't matter because they don't > seem to > care about rules, only what they can torture a person with. When I > was taken > off anti-inflammatories, there were no other instructions or help. I > just > had to stop taking them. Then when he raised my MTX to 1.2 cc/week, > he > didn't raise Folic Acid so my tongue swelled and I lost taste buds > except > around the edges. I finally found from this group what was going on > and > called, and she said, " Oh, yeah, start taking 5 mg per day " , just > like it > was an afterthought and not a problem. I still wish I had another > option > instead of this pair. I'm still working on that. > > Dennis Quote Link to comment Share on other sites More sharing options...
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