Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hey Dennis, I am so glad that you gave all of us another chance. I am a lurker and stay quiet until someone out there peaks my curiosity and a subject close at hand. Now I have had my share of drs, and all seemed well. Then I was thrown into the pool of rheumotologists. I have never in my life seen such a group. They first one I got from a referral from the hospital that had taken care of me during the cancer. Well, we spent time together, he never looked at me, he talked only to his assistant, I couldn't hear what he was saying and he felt put out when I told him he was talking too low. I finally asked him the bottom line. " You have rheumatoid arthritis, osteoporitis, osterarthitis and test positive for lupus. But let's not worry about that now. " he say. He gives a script for cellebrex and tells me I will see you in 3 months.I was a little overwhelmed at least. I tried those months and nothing seemed to help. The cellebrex was too expensive even on a copay. So my daughter got me a different rheumy. He was very nice and told me everything. His testing showed no lupus, but the RA, OA and osterporosis did exist.OK. let's go to door #3. I am finally on a regiment with this dr. He has been with me forever. And is the most kind and caring dr. I have ever had. He has totally taken over my case and what is doing has kept me almost painfree for days at a time. I know it is probably not forever, but he has made me comfortable for a while and he is always excessible to me. So don't get too discouraged, you will find the right one. It just takes time. Sorry for the long post but when I get going ya can't shut me up. I hope that you can find someone who will take care of you. Judith Ann in Glendale, Az A short time back, one of the ladies referred to a Rheumy (as we generally abbreviate) as a Rummy. I was going to reply to that, but let it go. However, I think I have a Rummy. I don't know if it's him or her, the nurse. My first dealing with her was when she was subbing for my Rheumy's nurse. I called to refill my BP meds and she said 'sure, no problem'. Then she never ordered them! Now that my original Rheumy has moved on, the only one left is her Rheumy. Last year, she made a big deal out of my having to do my blood tests on Thursday because I take my MTX on Sunday, so she changed schedules to reflect this. Now she has changed her tune, and has me going to the lab every 4 weeks only on Tuesday! That's because they close the lab Thurs & Fri and go to another clinic on the other side of town, and she wouldn't be able to fill meds on time. I called last week to have my MTX refilled, and she unloaded on me for not doing a lab test on the 4 week schedule instead. She never got the MTX ordered but had plenty of time to schedule my labs for the rest of the year! My creatinine level went up because of a different BP med and stabilized at 1.4 instead of the usual 1.2. She and/or the Rheumy made the decision to cut off my anti-inflammatories but did nothing to help me after that. I'm definitely worse off since I started to use this doc. They didn't even raise my Folic acid when he went up on my MTX, and I didn't know about complications until someone on this board mentioned a swelling tongue. I called to find out about it and was told, " oh yeah, that's the reason you should increase the Folic " . It was obviously an afterthought. Information I found on Creatinine said that to really find out if it's a problem with the kidneys, a 24 hour urine test is also required. They haven't done this, and when I asked about it, the answer was a mumble about it doesn't have to be done. I get the idea that I didn't have to get off Clinoril only because of that small increase in Creatinine. Some people have a 'normal' creatinine level of 1.4-1.5 . I wish I could switch to another doc but that's the only one I can afford since the hospital helps me on bills there, and he's the only game in town. Any words of wisdom, please? Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hey Dennis, I am so glad that you gave all of us another chance. I am a lurker and stay quiet until someone out there peaks my curiosity and a subject close at hand. Now I have had my share of drs, and all seemed well. Then I was thrown into the pool of rheumotologists. I have never in my life seen such a group. They first one I got from a referral from the hospital that had taken care of me during the cancer. Well, we spent time together, he never looked at me, he talked only to his assistant, I couldn't hear what he was saying and he felt put out when I told him he was talking too low. I finally asked him the bottom line. " You have rheumatoid arthritis, osteoporitis, osterarthitis and test positive for lupus. But let's not worry about that now. " he say. He gives a script for cellebrex and tells me I will see you in 3 months.I was a little overwhelmed at least. I tried those months and nothing seemed to help. The cellebrex was too expensive even on a copay. So my daughter got me a different rheumy. He was very nice and told me everything. His testing showed no lupus, but the RA, OA and osterporosis did exist.OK. let's go to door #3. I am finally on a regiment with this dr. He has been with me forever. And is the most kind and caring dr. I have ever had. He has totally taken over my case and what is doing has kept me almost painfree for days at a time. I know it is probably not forever, but he has made me comfortable for a while and he is always excessible to me. So don't get too discouraged, you will find the right one. It just takes time. Sorry for the long post but when I get going ya can't shut me up. I hope that you can find someone who will take care of you. Judith Ann in Glendale, Az A short time back, one of the ladies referred to a Rheumy (as we generally abbreviate) as a Rummy. I was going to reply to that, but let it go. However, I think I have a Rummy. I don't know if it's him or her, the nurse. My first dealing with her was when she was subbing for my Rheumy's nurse. I called to refill my BP meds and she said 'sure, no problem'. Then she never ordered them! Now that my original Rheumy has moved on, the only one left is her Rheumy. Last year, she made a big deal out of my having to do my blood tests on Thursday because I take my MTX on Sunday, so she changed schedules to reflect this. Now she has changed her tune, and has me going to the lab every 4 weeks only on Tuesday! That's because they close the lab Thurs & Fri and go to another clinic on the other side of town, and she wouldn't be able to fill meds on time. I called last week to have my MTX refilled, and she unloaded on me for not doing a lab test on the 4 week schedule instead. She never got the MTX ordered but had plenty of time to schedule my labs for the rest of the year! My creatinine level went up because of a different BP med and stabilized at 1.4 instead of the usual 1.2. She and/or the Rheumy made the decision to cut off my anti-inflammatories but did nothing to help me after that. I'm definitely worse off since I started to use this doc. They didn't even raise my Folic acid when he went up on my MTX, and I didn't know about complications until someone on this board mentioned a swelling tongue. I called to find out about it and was told, " oh yeah, that's the reason you should increase the Folic " . It was obviously an afterthought. Information I found on Creatinine said that to really find out if it's a problem with the kidneys, a 24 hour urine test is also required. They haven't done this, and when I asked about it, the answer was a mumble about it doesn't have to be done. I get the idea that I didn't have to get off Clinoril only because of that small increase in Creatinine. Some people have a 'normal' creatinine level of 1.4-1.5 . I wish I could switch to another doc but that's the only one I can afford since the hospital helps me on bills there, and he's the only game in town. Any words of wisdom, please? Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Dennis, you don't have to be treated by a rheumatologist. If you can find a very good GP, he or she can help you. Any possibility of doing that? If not, what about writing a list of concerns for your rheumatologist for the next visit? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Me and my Rummy >A short time back, one of the ladies referred to a Rheumy (as we generally > abbreviate) as a Rummy. I was going to reply to that, but let it go. > However, I think I have a Rummy. I don't know if it's him or her, the > nurse. > My first dealing with her was when she was subbing for my Rheumy's nurse. > I > called to refill my BP meds and she said 'sure, no problem'. Then she > never > ordered them! > > Now that my original Rheumy has moved on, the only one left is her Rheumy. > Last year, she made a big deal out of my having to do my blood tests on > Thursday because I take my MTX on Sunday, so she changed schedules to > reflect this. Now she has changed her tune, and has me going to the lab > every 4 weeks only on Tuesday! That's because they close the lab Thurs & > Fri > and go to another clinic on the other side of town, and she wouldn't be > able > to fill meds on time. I called last week to have my MTX refilled, and she > unloaded on me for not doing a lab test on the 4 week schedule instead. > She > never got the MTX ordered but had plenty of time to schedule my labs for > the > rest of the year! > > My creatinine level went up because of a different BP med and stabilized > at > 1.4 instead of the usual 1.2. She and/or the Rheumy made the decision to > cut > off my anti-inflammatories but did nothing to help me after that. I'm > definitely worse off since I started to use this doc. They didn't even > raise > my Folic acid when he went up on my MTX, and I didn't know about > complications until someone on this board mentioned a swelling tongue. I > called to find out about it and was told, " oh yeah, that's the reason you > should increase the Folic " . It was obviously an afterthought. > > Information I found on Creatinine said that to really find out if it's a > problem with the kidneys, a 24 hour urine test is also required. They > haven't done this, and when I asked about it, the answer was a mumble > about > it doesn't have to be done. I get the idea that I didn't have to get off > Clinoril only because of that small increase in Creatinine. Some people > have > a 'normal' creatinine level of 1.4-1.5 . > > I wish I could switch to another doc but that's the only one I can afford > since the hospital helps me on bills there, and he's the only game in > town. > Any words of wisdom, please? > > Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Dennis, you don't have to be treated by a rheumatologist. If you can find a very good GP, he or she can help you. Any possibility of doing that? If not, what about writing a list of concerns for your rheumatologist for the next visit? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Me and my Rummy >A short time back, one of the ladies referred to a Rheumy (as we generally > abbreviate) as a Rummy. I was going to reply to that, but let it go. > However, I think I have a Rummy. I don't know if it's him or her, the > nurse. > My first dealing with her was when she was subbing for my Rheumy's nurse. > I > called to refill my BP meds and she said 'sure, no problem'. Then she > never > ordered them! > > Now that my original Rheumy has moved on, the only one left is her Rheumy. > Last year, she made a big deal out of my having to do my blood tests on > Thursday because I take my MTX on Sunday, so she changed schedules to > reflect this. Now she has changed her tune, and has me going to the lab > every 4 weeks only on Tuesday! That's because they close the lab Thurs & > Fri > and go to another clinic on the other side of town, and she wouldn't be > able > to fill meds on time. I called last week to have my MTX refilled, and she > unloaded on me for not doing a lab test on the 4 week schedule instead. > She > never got the MTX ordered but had plenty of time to schedule my labs for > the > rest of the year! > > My creatinine level went up because of a different BP med and stabilized > at > 1.4 instead of the usual 1.2. She and/or the Rheumy made the decision to > cut > off my anti-inflammatories but did nothing to help me after that. I'm > definitely worse off since I started to use this doc. They didn't even > raise > my Folic acid when he went up on my MTX, and I didn't know about > complications until someone on this board mentioned a swelling tongue. I > called to find out about it and was told, " oh yeah, that's the reason you > should increase the Folic " . It was obviously an afterthought. > > Information I found on Creatinine said that to really find out if it's a > problem with the kidneys, a 24 hour urine test is also required. They > haven't done this, and when I asked about it, the answer was a mumble > about > it doesn't have to be done. I get the idea that I didn't have to get off > Clinoril only because of that small increase in Creatinine. Some people > have > a 'normal' creatinine level of 1.4-1.5 . > > I wish I could switch to another doc but that's the only one I can afford > since the hospital helps me on bills there, and he's the only game in > town. > Any words of wisdom, please? > > Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Dennis I referred to my Rheumy as a Rummy because in my opion that " s what he is. I was dignoised with RA in Feb. this year so this is new to me. But it came on in full force. I have not had a pain free day since Dec. last year. I read where a lot of you work I don " t know how. I hurt so bad all the time My fingers and wrist are so swallon my fingers will not bend. Most of the time I can not walk with out assistance the bottom of my feet hurt so bad when I stand there pain in my ankles, knees my shoulders hurt and at times I can not move my arms with out screaming in pain and in the last 2 days my neck has pain going up the back of my head I have seem the Dr. 2 times the first visit he told me he though I had lupus as well as RA that I was showing a lot of signs of lupus so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for plaquenil said it could take up to 3 months to see any improvement I saw no improvement in two weeks later got much worse.He gave me a graduated dose of Prednisone which helped the first two days then all the pain came back. two weeks later it was time for my second visit he took me off Hydroxychlor and prednisone and put me on Metotrexate7.5 mg I ask him if I should continue my prednisone he said no. I ask if I should be taking folic acid with metotrexate he said not necessary but if I wanted to take it I could. I ask now if this does not work (which I had my doughts because thats what my primary Dr. had me on for 3 months untill I could get into see the Rheumy and he told me that I had to take folic acid ) what do we do He said there was nothing else to do that there was only Metotrexate and Plaquenil.so now you see why I called him my Rummy. He did order blood work to check for lupus it came back negative thank God but he said that did not mean anything I could still have it that blew my mind I just spent $400.00 for that blood work I have no insurance. maybe its me and not the Dr. but things just do not add up and Im not getting any relief I do not respond or write to the board beccause it takes to long I have been almost 2 hrs. writing this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Dennis I referred to my Rheumy as a Rummy because in my opion that " s what he is. I was dignoised with RA in Feb. this year so this is new to me. But it came on in full force. I have not had a pain free day since Dec. last year. I read where a lot of you work I don " t know how. I hurt so bad all the time My fingers and wrist are so swallon my fingers will not bend. Most of the time I can not walk with out assistance the bottom of my feet hurt so bad when I stand there pain in my ankles, knees my shoulders hurt and at times I can not move my arms with out screaming in pain and in the last 2 days my neck has pain going up the back of my head I have seem the Dr. 2 times the first visit he told me he though I had lupus as well as RA that I was showing a lot of signs of lupus so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for plaquenil said it could take up to 3 months to see any improvement I saw no improvement in two weeks later got much worse.He gave me a graduated dose of Prednisone which helped the first two days then all the pain came back. two weeks later it was time for my second visit he took me off Hydroxychlor and prednisone and put me on Metotrexate7.5 mg I ask him if I should continue my prednisone he said no. I ask if I should be taking folic acid with metotrexate he said not necessary but if I wanted to take it I could. I ask now if this does not work (which I had my doughts because thats what my primary Dr. had me on for 3 months untill I could get into see the Rheumy and he told me that I had to take folic acid ) what do we do He said there was nothing else to do that there was only Metotrexate and Plaquenil.so now you see why I called him my Rummy. He did order blood work to check for lupus it came back negative thank God but he said that did not mean anything I could still have it that blew my mind I just spent $400.00 for that blood work I have no insurance. maybe its me and not the Dr. but things just do not add up and Im not getting any relief I do not respond or write to the board beccause it takes to long I have been almost 2 hrs. writing this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hello , This is . OH MY GOSH! You have an absolute idiot for a Rheumy! He is NOT just bordering on malpractice - he's over the line! you MUST take folic acid w/ methotrexate. And if you've been on it for months before with no results, you need to stop, anyway! Of course there is more than methotrexate and plaquenil! There is Embrel - which is a weekly or biweekly injection, any many people swear by it. That Dr. probably didn't mention it (I'm giving him the benefit of the doubt here!) because it is so expensive like $200 a shot!. You don't mention how much prednisone you were on with the " graduated dose " but generally it should be 60-80mg for 2-4 days,then 40-60mg for 2-3 days, then 20 mg for 4 days (sometimes even stay at 20mg for up to 2 wks), then settle with 10mg for good. Of course there are variations to this. I begged my MD to allow me stay on 30mg as nothing else worked,and he did allow it until I got osteopenia (precurser to osteoporosis). Something else that works and is very cheap, is SULINDAC. It's an older NSAID, but works! You need to get the flare/swelling under control - and sometimes that takes drastic measures - like " pulse " steroids which es even higher doses of prednisone, but for short period of time. THEN AND ONLY THEN can you begin to get the pain under control. And of course, it is perfectly reasonable to take narcotic analgesics for pain during these bad times. please stand up for yourself. This is YOUR life, not your Rheumy's. And you DESERVE relief! Hope this helps. A fellow sufferer, > Dennis > I referred to my Rheumy as a Rummy because in my opion that " s what he is. > I was dignoised with RA in Feb. this year so this is new to me. But it came on > in full force. I have not had a pain free day since Dec. last year. I read > where a lot of you work I don " t know how. I hurt so bad all the time My fingers > and wrist are so swallon my fingers will not bend. Most of the time I can not > walk with out assistance the bottom of my feet hurt so bad when I stand there > pain in my ankles, knees my shoulders hurt and at times I can not move my > arms with out screaming in pain and in the last 2 days my neck has pain going up > the back of my head I have seem the Dr. 2 times the first visit he told me he > though I had lupus as well as RA that I was showing a lot of signs of lupus > so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for plaquenil > said it could take up to 3 months to see any improvement I saw no improvement > in two weeks later got much worse.He gave me a graduated dose of Prednisone > which helped the first two days then all the pain came back. two weeks later > it was time for my second visit he took me off Hydroxychlor and prednisone > and put me on Metotrexate7.5 mg I ask him if I should continue my prednisone he > said no. I ask if I should be taking folic acid with metotrexate he said not > necessary but if I wanted to take it I could. I ask now if this does not work > (which I had my doughts because thats what my primary Dr. had me on for 3 > months untill I could get into see the Rheumy and he told me that I had to take > folic acid ) what do we do He said there was nothing else to do that there was > only Metotrexate and Plaquenil.so now you see why I called him my Rummy. He > did order blood work to check for lupus it came back negative thank God but he > said that did not mean anything I could still have it that blew my mind I just > spent $400.00 for that blood work I have no insurance. maybe its me and not > the Dr. but things just do not add up and Im not getting any relief I do not > respond or write to the board beccause it takes to long I have been almost 2 > hrs. writing this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hello , This is . OH MY GOSH! You have an absolute idiot for a Rheumy! He is NOT just bordering on malpractice - he's over the line! you MUST take folic acid w/ methotrexate. And if you've been on it for months before with no results, you need to stop, anyway! Of course there is more than methotrexate and plaquenil! There is Embrel - which is a weekly or biweekly injection, any many people swear by it. That Dr. probably didn't mention it (I'm giving him the benefit of the doubt here!) because it is so expensive like $200 a shot!. You don't mention how much prednisone you were on with the " graduated dose " but generally it should be 60-80mg for 2-4 days,then 40-60mg for 2-3 days, then 20 mg for 4 days (sometimes even stay at 20mg for up to 2 wks), then settle with 10mg for good. Of course there are variations to this. I begged my MD to allow me stay on 30mg as nothing else worked,and he did allow it until I got osteopenia (precurser to osteoporosis). Something else that works and is very cheap, is SULINDAC. It's an older NSAID, but works! You need to get the flare/swelling under control - and sometimes that takes drastic measures - like " pulse " steroids which es even higher doses of prednisone, but for short period of time. THEN AND ONLY THEN can you begin to get the pain under control. And of course, it is perfectly reasonable to take narcotic analgesics for pain during these bad times. please stand up for yourself. This is YOUR life, not your Rheumy's. And you DESERVE relief! Hope this helps. A fellow sufferer, > Dennis > I referred to my Rheumy as a Rummy because in my opion that " s what he is. > I was dignoised with RA in Feb. this year so this is new to me. But it came on > in full force. I have not had a pain free day since Dec. last year. I read > where a lot of you work I don " t know how. I hurt so bad all the time My fingers > and wrist are so swallon my fingers will not bend. Most of the time I can not > walk with out assistance the bottom of my feet hurt so bad when I stand there > pain in my ankles, knees my shoulders hurt and at times I can not move my > arms with out screaming in pain and in the last 2 days my neck has pain going up > the back of my head I have seem the Dr. 2 times the first visit he told me he > though I had lupus as well as RA that I was showing a lot of signs of lupus > so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for plaquenil > said it could take up to 3 months to see any improvement I saw no improvement > in two weeks later got much worse.He gave me a graduated dose of Prednisone > which helped the first two days then all the pain came back. two weeks later > it was time for my second visit he took me off Hydroxychlor and prednisone > and put me on Metotrexate7.5 mg I ask him if I should continue my prednisone he > said no. I ask if I should be taking folic acid with metotrexate he said not > necessary but if I wanted to take it I could. I ask now if this does not work > (which I had my doughts because thats what my primary Dr. had me on for 3 > months untill I could get into see the Rheumy and he told me that I had to take > folic acid ) what do we do He said there was nothing else to do that there was > only Metotrexate and Plaquenil.so now you see why I called him my Rummy. He > did order blood work to check for lupus it came back negative thank God but he > said that did not mean anything I could still have it that blew my mind I just > spent $400.00 for that blood work I have no insurance. maybe its me and not > the Dr. but things just do not add up and Im not getting any relief I do not > respond or write to the board beccause it takes to long I have been almost 2 > hrs. writing this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 , I'm sorry you are hurting so much. Hopefully when you get meds that help, you'll feel better. Not all rheumy's prescribe folic acid right away. They may wait to see if there are side effects that the folic acid will help. What dose did your GP have you on? If you were on a low dose, it may not have been enough. When someone doesn't respond to mtx, they will increase the dose. Also there is both pill and injectable form and the injectable mtx is sometimes more effective. Unfortunately blood tests alone can't diagnose these diseases. They give the doctor important information though, so it's not for nothing. I hope you feel better. a On Jun 15, 2005, at 11:07 AM, mamajudies@... wrote: > Dennis >  I referred to my Rheumy as a Rummy because in my opion that " s what > he is. > I was dignoised with RA in Feb. this year so this is new to me. But > it came on > in full force. I have not had a pain free day since Dec. last year. I > read > where a lot of you work I don " t know how. I hurt so bad all the time > My fingers > and wrist are so swallon my fingers will not bend. Most of the time > I can not > walk with out assistance the bottom of my feet hurt so bad when I > stand there > pain in my ankles, knees my shoulders hurt and at times I can not > move my > arms with out screaming in pain and in the last 2 days my neck has > pain going up > the back of my head I have seem the Dr. 2 times the first visit he > told me he > though I had lupus as well as RA that I was showing a lot of signs of > lupus > so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for > plaquenil > said it could take up to 3 months to see any improvement I saw no > improvement > in two weeks later got much worse.He gave me a graduated dose of > Prednisone > which helped the first two days then all the pain came back. two > weeks later > it was time for my second visit he took me off Hydroxychlor and > prednisone > and put me on Metotrexate7.5 mg I ask him if I should continue my > prednisone he > said no. I ask if I should be taking folic acid with metotrexate he > said not > necessary but if I wanted to take it I could. I ask now if this does > not work > (which I had my doughts because thats what my primary Dr. had me on > for 3 > months untill I could get into see the Rheumy and he told me that I > had to take > folic acid ) what do we do He said there was nothing else to do that > there was > only Metotrexate and Plaquenil.so now you see why I called him my > Rummy. He > did order blood work to check for lupus it came back negative thank > God but he > said that did not mean anything I could still have it that blew my > mind I just > spent $400.00 for that blood work I have no insurance. maybe its me > and not > the Dr. but things just do not add up and Im not getting any relief I > do not > respond or write to the board beccause it takes to long I have been > almost 2 > hrs. writing this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 , I'm sorry you are hurting so much. Hopefully when you get meds that help, you'll feel better. Not all rheumy's prescribe folic acid right away. They may wait to see if there are side effects that the folic acid will help. What dose did your GP have you on? If you were on a low dose, it may not have been enough. When someone doesn't respond to mtx, they will increase the dose. Also there is both pill and injectable form and the injectable mtx is sometimes more effective. Unfortunately blood tests alone can't diagnose these diseases. They give the doctor important information though, so it's not for nothing. I hope you feel better. a On Jun 15, 2005, at 11:07 AM, mamajudies@... wrote: > Dennis >  I referred to my Rheumy as a Rummy because in my opion that " s what > he is. > I was dignoised with RA in Feb. this year so this is new to me. But > it came on > in full force. I have not had a pain free day since Dec. last year. I > read > where a lot of you work I don " t know how. I hurt so bad all the time > My fingers > and wrist are so swallon my fingers will not bend. Most of the time > I can not > walk with out assistance the bottom of my feet hurt so bad when I > stand there > pain in my ankles, knees my shoulders hurt and at times I can not > move my > arms with out screaming in pain and in the last 2 days my neck has > pain going up > the back of my head I have seem the Dr. 2 times the first visit he > told me he > though I had lupus as well as RA that I was showing a lot of signs of > lupus > so he put me on 10mg. prednisone plus 200mg. Hydroxychlor generic for > plaquenil > said it could take up to 3 months to see any improvement I saw no > improvement > in two weeks later got much worse.He gave me a graduated dose of > Prednisone > which helped the first two days then all the pain came back. two > weeks later > it was time for my second visit he took me off Hydroxychlor and > prednisone > and put me on Metotrexate7.5 mg I ask him if I should continue my > prednisone he > said no. I ask if I should be taking folic acid with metotrexate he > said not > necessary but if I wanted to take it I could. I ask now if this does > not work > (which I had my doughts because thats what my primary Dr. had me on > for 3 > months untill I could get into see the Rheumy and he told me that I > had to take > folic acid ) what do we do He said there was nothing else to do that > there was > only Metotrexate and Plaquenil.so now you see why I called him my > Rummy. He > did order blood work to check for lupus it came back negative thank > God but he > said that did not mean anything I could still have it that blew my > mind I just > spent $400.00 for that blood work I have no insurance. maybe its me > and not > the Dr. but things just do not add up and Im not getting any relief I > do not > respond or write to the board beccause it takes to long I have been > almost 2 > hrs. writing this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi! My name is Chris. First I would like to introduce myself a it. I am 28 years old.. I was diagnosed with RA a year and a half ago. It was first thought to be lupis, but further tests show RA. I was and still am very scared of this disease! I am a mother of 3 young kids and I work full time. I find each day a challenge. But, I have decided that I am not going to let this disease take over my life! I ave tried plaquenil, it did nothing for me. I am so lucky to have a great Rheumatologist!! She is wonderful. I take 6 pills of methotrexate a week. I also take folic acid, because it is manditory with methotrexate. I am still on the prednisone, only 10 mg a day. I feel really bad a couple of days before I take the methotrexate. I told my dr this and she suggested trying enbrel. I started it yesterday. I was so scared to inject myself, but I did it. She said it is not normal to feel bad a few days before taking my next dose. Hopefully I can come off the prednisone completely and maybe even lower my dosage of methotrexate! It has been a very hard change in life for me, as I am very active! I take alot of advice from others and I read alot. I try to stay away from the night shade veggies and red meat. I do occassionally sneak some in, but boy do I pay later on! I am so glad I found you guys!!! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi! My name is Chris. First I would like to introduce myself a it. I am 28 years old.. I was diagnosed with RA a year and a half ago. It was first thought to be lupis, but further tests show RA. I was and still am very scared of this disease! I am a mother of 3 young kids and I work full time. I find each day a challenge. But, I have decided that I am not going to let this disease take over my life! I ave tried plaquenil, it did nothing for me. I am so lucky to have a great Rheumatologist!! She is wonderful. I take 6 pills of methotrexate a week. I also take folic acid, because it is manditory with methotrexate. I am still on the prednisone, only 10 mg a day. I feel really bad a couple of days before I take the methotrexate. I told my dr this and she suggested trying enbrel. I started it yesterday. I was so scared to inject myself, but I did it. She said it is not normal to feel bad a few days before taking my next dose. Hopefully I can come off the prednisone completely and maybe even lower my dosage of methotrexate! It has been a very hard change in life for me, as I am very active! I take alot of advice from others and I read alot. I try to stay away from the night shade veggies and red meat. I do occassionally sneak some in, but boy do I pay later on! I am so glad I found you guys!!! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 welcome! I am so glad you have a good doc. I do too, and it is such a blessing. I have a 28 y.o. daughter who has three children. Here's hoping the enbrel does the trick for you- a lot of the group are on it- I do remicade every 6 wks. Sometimes I wish I was on an injectable, as the remicade takes such a chunk out of my day. But i have met so many nice people during the infusions so it's all good. God bless you and yours as you work and do the Mommy Thing- I know it's hard. I was a single mom with four....it does get easier as they get older. From VERY sunny Dallas TX... Jane > Hi! My name is Chris. First I would like to introduce myself a > it. I am 28 years old.. I was diagnosed with RA a year and a half > ago. It was first thought to be lupis, but further tests show RA. > I was and still am very scared of this disease! I am a mother of 3 > young kids and I work full time. I find each day a challenge. But, > I have decided that I am not going to let this disease take over my > life! I ave tried plaquenil, it did nothing for me. I am so lucky > to have a great Rheumatologist!! She is wonderful. I take 6 pills > of methotrexate a week. I also take folic acid, because it is > manditory with methotrexate. I am still on the prednisone, only 10 > mg a day. I feel really bad a couple of days before I take the > methotrexate. I told my dr this and she suggested trying enbrel. I > started it yesterday. I was so scared to inject myself, but I did > it. She said it is not normal to feel bad a few days before taking > my next dose. Hopefully I can come off the prednisone completely > and maybe even lower my dosage of methotrexate! It has been a very > hard change in life for me, as I am very active! I take alot of > advice from others and I read alot. I try to stay away from the > night shade veggies and red meat. I do occassionally sneak some in, > but boy do I pay later on! I am so glad I found you guys!!! > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 welcome! I am so glad you have a good doc. I do too, and it is such a blessing. I have a 28 y.o. daughter who has three children. Here's hoping the enbrel does the trick for you- a lot of the group are on it- I do remicade every 6 wks. Sometimes I wish I was on an injectable, as the remicade takes such a chunk out of my day. But i have met so many nice people during the infusions so it's all good. God bless you and yours as you work and do the Mommy Thing- I know it's hard. I was a single mom with four....it does get easier as they get older. From VERY sunny Dallas TX... Jane > Hi! My name is Chris. First I would like to introduce myself a > it. I am 28 years old.. I was diagnosed with RA a year and a half > ago. It was first thought to be lupis, but further tests show RA. > I was and still am very scared of this disease! I am a mother of 3 > young kids and I work full time. I find each day a challenge. But, > I have decided that I am not going to let this disease take over my > life! I ave tried plaquenil, it did nothing for me. I am so lucky > to have a great Rheumatologist!! She is wonderful. I take 6 pills > of methotrexate a week. I also take folic acid, because it is > manditory with methotrexate. I am still on the prednisone, only 10 > mg a day. I feel really bad a couple of days before I take the > methotrexate. I told my dr this and she suggested trying enbrel. I > started it yesterday. I was so scared to inject myself, but I did > it. She said it is not normal to feel bad a few days before taking > my next dose. Hopefully I can come off the prednisone completely > and maybe even lower my dosage of methotrexate! It has been a very > hard change in life for me, as I am very active! I take alot of > advice from others and I read alot. I try to stay away from the > night shade veggies and red meat. I do occassionally sneak some in, > but boy do I pay later on! I am so glad I found you guys!!! > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi, Chris. I'm one of the lucky ones whose RA is mild - I only take naproxen and plaquenil. But I also have fibromyalgia. You might ask your doctor to check you for fibro. It turns out that most of my pain is from the fibro and not the RA. It is fairly common for a person to have more than one thing going on, so do look into it. I became ill at age 40 - with two daughters just hitting Middle School. I'm sad to say that I wasn't very good at being both a parent and sick. But my girls survived and have turned into such good citizens - I guess being there when they were small mattered the most. So hang in there and come here often to vent. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi, Chris. I'm one of the lucky ones whose RA is mild - I only take naproxen and plaquenil. But I also have fibromyalgia. You might ask your doctor to check you for fibro. It turns out that most of my pain is from the fibro and not the RA. It is fairly common for a person to have more than one thing going on, so do look into it. I became ill at age 40 - with two daughters just hitting Middle School. I'm sad to say that I wasn't very good at being both a parent and sick. But my girls survived and have turned into such good citizens - I guess being there when they were small mattered the most. So hang in there and come here often to vent. Nina Quote Link to comment Share on other sites More sharing options...
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