Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Hi , The only time I felt unbearably tired was when the RA was totally out of control. A lot of people seem to find that MTX causes fatigue, but I was lucky enough not to have that problem. I am now on Enbrel and it does not cause me any fatigue. n in France [ ] cindy coping with RA Hi I'm cindy and am new to all this about a eighteen months ago I was in the hospital with a real bad fever and joint pain, little did I know I was for the long run they diagnosed me with RA at first I thought maybe a couple of medications for a few weeks and that will do. RA has changed my life in many ways I'm not the same person I used to be. Family and friends don't understand what it is to have RA especially because they think this disease only happends to older people and I'm a twentyeight year old. My Dr. started me with plaquenil, prednisone, and celebrex, the plaquenil did not work so he decided to start me on Enbrel two inyections a week that made a difference but I feel so tired sometimes is that because of the meds? Well thank you for the suport and hope to here from you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Hi , The only time I felt unbearably tired was when the RA was totally out of control. A lot of people seem to find that MTX causes fatigue, but I was lucky enough not to have that problem. I am now on Enbrel and it does not cause me any fatigue. n in France [ ] cindy coping with RA Hi I'm cindy and am new to all this about a eighteen months ago I was in the hospital with a real bad fever and joint pain, little did I know I was for the long run they diagnosed me with RA at first I thought maybe a couple of medications for a few weeks and that will do. RA has changed my life in many ways I'm not the same person I used to be. Family and friends don't understand what it is to have RA especially because they think this disease only happends to older people and I'm a twentyeight year old. My Dr. started me with plaquenil, prednisone, and celebrex, the plaquenil did not work so he decided to start me on Enbrel two inyections a week that made a difference but I feel so tired sometimes is that because of the meds? Well thank you for the suport and hope to here from you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Isn't that the truth!! I work in a hospital and the employees (including the nurses) find out I have RA and they just say " well, I have arthritis, too. You don't see me complaining " . I even had a doctor tell me that he has it in his elbow!! Granted, he is a OB/GYN surgeon, so I let it slide. But it would seem that the only part of RA people hear (or perhaps understand) is " arthritis " . I really wish they would rename this disease and take the arthritis part of it out. I know it is just a word to describe the area affected, but it is the ignorant who gives us trouble. It's as if they think ALL arthritis is the same!! Oh, I suppose ignorance IS bliss!! It doesn't make living with this any easier, does it. There is someone else that I work with who was told she also has RA. She goes around and tells people that she doesn't understand why I have so much trouble. She goes on to say that she has RA and doesn't have much trouble with it at all. I tell her that she needs to count her blessings and go do some research on RA. Well, she came back and appologized. She actually gets it, now. I had refered her to my rheumy and HE made sure she understood the different degrees of severity that this disease can have. Good for him!! And koodo's to her for appologizing....Marina > , > > I am 26 with RA, and also find it frustrating. People > think just because it contains the word arthritis it > is similar to the arthritis you get when your older. > I find most people do not know what RA actually is. > Sometimes I feel because they do not understand it, > they feel I am overreacting. I am venting now.....but > the common phrase I hear is, " oh your only supposed to > get that when you are older or my age " > > The tiredness is both. I am finding that the meds are > making me tired. > > Jessy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Isn't that the truth!! I work in a hospital and the employees (including the nurses) find out I have RA and they just say " well, I have arthritis, too. You don't see me complaining " . I even had a doctor tell me that he has it in his elbow!! Granted, he is a OB/GYN surgeon, so I let it slide. But it would seem that the only part of RA people hear (or perhaps understand) is " arthritis " . I really wish they would rename this disease and take the arthritis part of it out. I know it is just a word to describe the area affected, but it is the ignorant who gives us trouble. It's as if they think ALL arthritis is the same!! Oh, I suppose ignorance IS bliss!! It doesn't make living with this any easier, does it. There is someone else that I work with who was told she also has RA. She goes around and tells people that she doesn't understand why I have so much trouble. She goes on to say that she has RA and doesn't have much trouble with it at all. I tell her that she needs to count her blessings and go do some research on RA. Well, she came back and appologized. She actually gets it, now. I had refered her to my rheumy and HE made sure she understood the different degrees of severity that this disease can have. Good for him!! And koodo's to her for appologizing....Marina > , > > I am 26 with RA, and also find it frustrating. People > think just because it contains the word arthritis it > is similar to the arthritis you get when your older. > I find most people do not know what RA actually is. > Sometimes I feel because they do not understand it, > they feel I am overreacting. I am venting now.....but > the common phrase I hear is, " oh your only supposed to > get that when you are older or my age " > > The tiredness is both. I am finding that the meds are > making me tired. > > Jessy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 And it's not as though osteoarthritis is a picnic in the park, either. My aunt has it and has had two knee replacements (on the same knee) and still has to use a walker. I have a friend who has it and has had hip replacements. I have also seen some fingers that look pretty bad from osteoarthritis; just not deformed in the same way that RA does it. Sue On Monday, March 14, 2005, at 09:29 PM, marina_troi wrote: > But it would seem that the only > part of RA people hear (or perhaps understand) is " arthritis " . I > really wish they would rename this disease and take the arthritis > part of it out. I know it is just a word to describe the area > affected, but it is the ignorant who gives us trouble. It's as if > they think ALL arthritis is the same!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 And it's not as though osteoarthritis is a picnic in the park, either. My aunt has it and has had two knee replacements (on the same knee) and still has to use a walker. I have a friend who has it and has had hip replacements. I have also seen some fingers that look pretty bad from osteoarthritis; just not deformed in the same way that RA does it. Sue On Monday, March 14, 2005, at 09:29 PM, marina_troi wrote: > But it would seem that the only > part of RA people hear (or perhaps understand) is " arthritis " . I > really wish they would rename this disease and take the arthritis > part of it out. I know it is just a word to describe the area > affected, but it is the ignorant who gives us trouble. It's as if > they think ALL arthritis is the same!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Dear - I am sorry to hear about your pain and lifestyle changes, but with appropriate medications and exercise you can really improve in your symptamology. First of all, no, there is not a cure for RA but one must understand that there is active disease " flare-ups " which are the most troublesome and then there is disease " remissions. " The goal of therapy should be to decrease and management flare-ups while maintaining as much independence as possible. During times of remission you will feel good and maybe even normal. You are very young and should think about LONG-TERM. You can really make a difference in your health outcomes by doing lots of things including getting mentally strong through places like support groups as you are doing. I do find that people who do not live in PAIN on a regular basis are often not very empathetic (including husbands) which can then create marital conflicts. You can write me back if you would like and tell me more details about your RA and it's stage, number of joints affected, etc. I have only had one doctor agree that RA is my diagnosis but it is still a working progress. I have bad spine problems and my hands keep swelling up. I am in the medical field and am not quite sure of the diagnosis myself. If it is RA, it is in the beginning stages. I wanted to visit with you about who is managing your care is it a Family Practice Doc/Internal Medicine Doc/ or Rheumatologist? I have done research on this disease and have found in numerous literature journals that the " gold standard " of treating RA is to use a disease-modifying anti-rheumatic drug (DMARD) in conjunction with a biologic response modifier (BMR). These are two separate drug classes and treat RA in different ways. The plaquenil is a DMARD and the Enbrel is a BMR. The best drug as a DMARD has been identified as Methotrexate. Plaquenil has not been as effective when compared and studied against Methotrexate. Additionally, Enbrel is a wonderful drug but you should also be on a DMARD like Methotrexate to get the " best " response to therapy and to slow joint destruction and disease progression. If you are being treated by a rheumatologist that's great and they should already know this. But you can always ask for another opinion if the Enbrel does not bring you into remission. Remember, you are very young, and you deserve the BEST Treatment options and care, so you can live a healthy and active life with RA. It really does get better, please take care and feel free to ask me any other questions. Teri (Wichita, Ks.) >From: " Galindo " <cindygalindo77@...> >Reply- > >Subject: [ ] cindy coping with RA >Date: Mon, 14 Mar 2005 17:52:38 -0000 > > > >Hi I'm cindy and am new to all this about a eighteen months ago I >was in the hospital with a real bad fever and joint pain, little did >I know I was for the long run they diagnosed me with RA at first I >thought maybe a couple of medications for a few weeks and that will >do. RA has changed my life in many ways I'm not the same person I >used to be. Family and friends don't understand what it is to have >RA especially because they think this disease only happends to older >people and I'm a twentyeight year old. My Dr. started me with >plaquenil, prednisone, and celebrex, the plaquenil did not work so >he decided to start me on Enbrel two inyections a week that made a >difference but I feel so tired sometimes is that because of the meds? >Well thank you for the suport and hope to here from you soon. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Dear - I am sorry to hear about your pain and lifestyle changes, but with appropriate medications and exercise you can really improve in your symptamology. First of all, no, there is not a cure for RA but one must understand that there is active disease " flare-ups " which are the most troublesome and then there is disease " remissions. " The goal of therapy should be to decrease and management flare-ups while maintaining as much independence as possible. During times of remission you will feel good and maybe even normal. You are very young and should think about LONG-TERM. You can really make a difference in your health outcomes by doing lots of things including getting mentally strong through places like support groups as you are doing. I do find that people who do not live in PAIN on a regular basis are often not very empathetic (including husbands) which can then create marital conflicts. You can write me back if you would like and tell me more details about your RA and it's stage, number of joints affected, etc. I have only had one doctor agree that RA is my diagnosis but it is still a working progress. I have bad spine problems and my hands keep swelling up. I am in the medical field and am not quite sure of the diagnosis myself. If it is RA, it is in the beginning stages. I wanted to visit with you about who is managing your care is it a Family Practice Doc/Internal Medicine Doc/ or Rheumatologist? I have done research on this disease and have found in numerous literature journals that the " gold standard " of treating RA is to use a disease-modifying anti-rheumatic drug (DMARD) in conjunction with a biologic response modifier (BMR). These are two separate drug classes and treat RA in different ways. The plaquenil is a DMARD and the Enbrel is a BMR. The best drug as a DMARD has been identified as Methotrexate. Plaquenil has not been as effective when compared and studied against Methotrexate. Additionally, Enbrel is a wonderful drug but you should also be on a DMARD like Methotrexate to get the " best " response to therapy and to slow joint destruction and disease progression. If you are being treated by a rheumatologist that's great and they should already know this. But you can always ask for another opinion if the Enbrel does not bring you into remission. Remember, you are very young, and you deserve the BEST Treatment options and care, so you can live a healthy and active life with RA. It really does get better, please take care and feel free to ask me any other questions. Teri (Wichita, Ks.) >From: " Galindo " <cindygalindo77@...> >Reply- > >Subject: [ ] cindy coping with RA >Date: Mon, 14 Mar 2005 17:52:38 -0000 > > > >Hi I'm cindy and am new to all this about a eighteen months ago I >was in the hospital with a real bad fever and joint pain, little did >I know I was for the long run they diagnosed me with RA at first I >thought maybe a couple of medications for a few weeks and that will >do. RA has changed my life in many ways I'm not the same person I >used to be. Family and friends don't understand what it is to have >RA especially because they think this disease only happends to older >people and I'm a twentyeight year old. My Dr. started me with >plaquenil, prednisone, and celebrex, the plaquenil did not work so >he decided to start me on Enbrel two inyections a week that made a >difference but I feel so tired sometimes is that because of the meds? >Well thank you for the suport and hope to here from you soon. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Dear teri first let me thank you for your support, now let me ask you what are " flare-ups " ? " remissions " ?. Right afterbeing diagnosed with RA I started limping from my right leg and I thought it was all part of the arthritis when I saw my Dr I asked him and he send me to get an MRI well results came back it was not RA he said I had a herniated disk in my lower back that was pushing on my nerve and was making my leg to go numbed. You asked me if I was seeing a rheumatologist and yes I am but I am also seeing a back Dr. and a OB/GYN as if it wasn't enogh I got a hysterectomy done about a month ago, that is why I'a telling you how complicated things got after being diagnosed with RA. Sometimes I what to give up but I got three children who need me because I can't belive how understanding they are when it comes to mom not being as active and fun like I used to. well thak you onece again hope to hear from you soon cindy g Teri Pay <teripay100@...> wrote: Dear - I am sorry to hear about your pain and lifestyle changes, but with appropriate medications and exercise you can really improve in your symptamology. First of all, no, there is not a cure for RA but one must understand that there is active disease " flare-ups " which are the most troublesome and then there is disease " remissions. " The goal of therapy should be to decrease and management flare-ups while maintaining as much independence as possible. During times of remission you will feel good and maybe even normal. You are very young and should think about LONG-TERM. You can really make a difference in your health outcomes by doing lots of things including getting mentally strong through places like support groups as you are doing. I do find that people who do not live in PAIN on a regular basis are often not very empathetic (including husbands) which can then create marital conflicts. You can write me back if you would like and tell me more details about your RA and it's stage, number of joints affected, etc. I have only had one doctor agree that RA is my diagnosis but it is still a working progress. I have bad spine problems and my hands keep swelling up. I am in the medical field and am not quite sure of the diagnosis myself. If it is RA, it is in the beginning stages. I wanted to visit with you about who is managing your care is it a Family Practice Doc/Internal Medicine Doc/ or Rheumatologist? I have done research on this disease and have found in numerous literature journals that the " gold standard " of treating RA is to use a disease-modifying anti-rheumatic drug (DMARD) in conjunction with a biologic response modifier (BMR). These are two separate drug classes and treat RA in different ways. The plaquenil is a DMARD and the Enbrel is a BMR. The best drug as a DMARD has been identified as Methotrexate. Plaquenil has not been as effective when compared and studied against Methotrexate. Additionally, Enbrel is a wonderful drug but you should also be on a DMARD like Methotrexate to get the " best " response to therapy and to slow joint destruction and disease progression. If you are being treated by a rheumatologist that's great and they should already know this. But you can always ask for another opinion if the Enbrel does not bring you into remission. Remember, you are very young, and you deserve the BEST Treatment options and care, so you can live a healthy and active life with RA. It really does get better, please take care and feel free to ask me any other questions. Teri (Wichita, Ks.) >From: " Galindo " <cindygalindo77@...> >Reply- > >Subject: [ ] cindy coping with RA >Date: Mon, 14 Mar 2005 17:52:38 -0000 > > > >Hi I'm cindy and am new to all this about a eighteen months ago I >was in the hospital with a real bad fever and joint pain, little did >I know I was for the long run they diagnosed me with RA at first I >thought maybe a couple of medications for a few weeks and that will >do. RA has changed my life in many ways I'm not the same person I >used to be. Family and friends don't understand what it is to have >RA especially because they think this disease only happends to older >people and I'm a twentyeight year old. My Dr. started me with >plaquenil, prednisone, and celebrex, the plaquenil did not work so >he decided to start me on Enbrel two inyections a week that made a >difference but I feel so tired sometimes is that because of the meds? >Well thank you for the suport and hope to here from you soon. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Dear teri first let me thank you for your support, now let me ask you what are " flare-ups " ? " remissions " ?. Right afterbeing diagnosed with RA I started limping from my right leg and I thought it was all part of the arthritis when I saw my Dr I asked him and he send me to get an MRI well results came back it was not RA he said I had a herniated disk in my lower back that was pushing on my nerve and was making my leg to go numbed. You asked me if I was seeing a rheumatologist and yes I am but I am also seeing a back Dr. and a OB/GYN as if it wasn't enogh I got a hysterectomy done about a month ago, that is why I'a telling you how complicated things got after being diagnosed with RA. Sometimes I what to give up but I got three children who need me because I can't belive how understanding they are when it comes to mom not being as active and fun like I used to. well thak you onece again hope to hear from you soon cindy g Teri Pay <teripay100@...> wrote: Dear - I am sorry to hear about your pain and lifestyle changes, but with appropriate medications and exercise you can really improve in your symptamology. First of all, no, there is not a cure for RA but one must understand that there is active disease " flare-ups " which are the most troublesome and then there is disease " remissions. " The goal of therapy should be to decrease and management flare-ups while maintaining as much independence as possible. During times of remission you will feel good and maybe even normal. You are very young and should think about LONG-TERM. You can really make a difference in your health outcomes by doing lots of things including getting mentally strong through places like support groups as you are doing. I do find that people who do not live in PAIN on a regular basis are often not very empathetic (including husbands) which can then create marital conflicts. You can write me back if you would like and tell me more details about your RA and it's stage, number of joints affected, etc. I have only had one doctor agree that RA is my diagnosis but it is still a working progress. I have bad spine problems and my hands keep swelling up. I am in the medical field and am not quite sure of the diagnosis myself. If it is RA, it is in the beginning stages. I wanted to visit with you about who is managing your care is it a Family Practice Doc/Internal Medicine Doc/ or Rheumatologist? I have done research on this disease and have found in numerous literature journals that the " gold standard " of treating RA is to use a disease-modifying anti-rheumatic drug (DMARD) in conjunction with a biologic response modifier (BMR). These are two separate drug classes and treat RA in different ways. The plaquenil is a DMARD and the Enbrel is a BMR. The best drug as a DMARD has been identified as Methotrexate. Plaquenil has not been as effective when compared and studied against Methotrexate. Additionally, Enbrel is a wonderful drug but you should also be on a DMARD like Methotrexate to get the " best " response to therapy and to slow joint destruction and disease progression. If you are being treated by a rheumatologist that's great and they should already know this. But you can always ask for another opinion if the Enbrel does not bring you into remission. Remember, you are very young, and you deserve the BEST Treatment options and care, so you can live a healthy and active life with RA. It really does get better, please take care and feel free to ask me any other questions. Teri (Wichita, Ks.) >From: " Galindo " <cindygalindo77@...> >Reply- > >Subject: [ ] cindy coping with RA >Date: Mon, 14 Mar 2005 17:52:38 -0000 > > > >Hi I'm cindy and am new to all this about a eighteen months ago I >was in the hospital with a real bad fever and joint pain, little did >I know I was for the long run they diagnosed me with RA at first I >thought maybe a couple of medications for a few weeks and that will >do. RA has changed my life in many ways I'm not the same person I >used to be. Family and friends don't understand what it is to have >RA especially because they think this disease only happends to older >people and I'm a twentyeight year old. My Dr. started me with >plaquenil, prednisone, and celebrex, the plaquenil did not work so >he decided to start me on Enbrel two inyections a week that made a >difference but I feel so tired sometimes is that because of the meds? >Well thank you for the suport and hope to here from you soon. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Welcome ! I'm so glad you found the group, sorry for your dx, and all the problems you have been having. Were all here for you,T > > > Hi I'm cindy and am new to all this about a eighteen months ago I > was in the hospital with a real bad fever and joint pain, little did > I know I was for the long run they diagnosed me with RA at first I > thought maybe a couple of medications for a few weeks and that will > do. RA has changed my life in many ways I'm not the same person I > used to be. Family and friends don't understand what it is to have > RA especially because they think this disease only happends to older > people and I'm a twentyeight year old. My Dr. started me with > plaquenil, prednisone, and celebrex, the plaquenil did not work so > he decided to start me on Enbrel two inyections a week that made a > difference but I feel so tired sometimes is that because of the meds? > Well thank you for the suport and hope to here from you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Welcome ! I'm so glad you found the group, sorry for your dx, and all the problems you have been having. Were all here for you,T > > > Hi I'm cindy and am new to all this about a eighteen months ago I > was in the hospital with a real bad fever and joint pain, little did > I know I was for the long run they diagnosed me with RA at first I > thought maybe a couple of medications for a few weeks and that will > do. RA has changed my life in many ways I'm not the same person I > used to be. Family and friends don't understand what it is to have > RA especially because they think this disease only happends to older > people and I'm a twentyeight year old. My Dr. started me with > plaquenil, prednisone, and celebrex, the plaquenil did not work so > he decided to start me on Enbrel two inyections a week that made a > difference but I feel so tired sometimes is that because of the meds? > Well thank you for the suport and hope to here from you soon. Quote Link to comment Share on other sites More sharing options...
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