Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Hi , thanks for the reply. I think what she actually said was RA with Lupus characteristics. I'm not sure about all of the blood tests. I keep bugging the hospital where I get my blood work done to send me the results, but they are very busy and probably forgot. This is a good reminder for me to call them again to try to get copies of the results. I am going to give the humira a chance to work, and then see what to do. My next appoinment is coming up next week, so I can ask about it then. Hope you have a happy thanksgiving. Stacey > Stacey, perhaps you should consider a second opinion. > > As a pointed out a few days ago, getting the correct diagnosis isn't > always easy and having both RA and lupus, unless you are talking about > an overlap syndrome, is uncommon. > > Not only that, but, if it is lupus, Humira (adalimumab) may not be a > good choice for treatment. Although it is being studied, treatment of > lupus with the anti-TNF biologics is controversial. Some researchers and > rheumatologists worry that the TNF blockers may exacerbate lupus. > > Did any of your physicians do any tests for lupus more specific than the > ANA such as anti-Sm or anti-dsDNA? > > > > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] Re: Another new one! > > > > > > > > > > Hi , Larry, Nea and all other newbies!! > > > > I, too am new to this group and have been busy reading all of the > > posts, advice and recipies. It is so wonderful to realize that I am > > not alone in this!! > > > > I am recently diagnosed with RA and Lupus. I was told by a > > chiropractor a couple of years ago that I had FM, and then about 4 > > months ago I started having INCREDIBLE amounts of pain. At the same > > time, I had some blood tests following surgery that had a positive > > ANA result. > > > > At the time, the dr. told me that it was normal for that to be high > > after my type of surgery, and come back in a month to get retested. > > If it was still positive, then they would send me to a rheumy. The > > next day I called and made an appointment with a rhuemy. Good thing > > I did - as it takes 6-8 weeks to get an initial appointment. > > > > A few weeks away from the appointment, I was in so much pain, I > > couldn't even hold a folder of papers in my hands without it hurting > > me. I went to the GP and did blood tests for Lymes, 5th disease, > > ANA, thyroid, and a bunch of other things I can't remember. And I > > got some Vicoden. > > > > The thyroid was high, so went to an endocrinolgist. No thyroid > > problems he said. In the parking lot, I broke down in tears to my > > husband saying, " the next person who tells me they don't know what's > > wrong with me, I am going to stand up on their desk and start > > screaming. " > > > > The 1st appt with the rheumy I was armed with the blood test > > results. She first said, hypothyroid, and " non-specific connective > > tissue disease " . I started on plaquenil and prednisone. The > > prednisone helped for a while, but then I developed SEVERE > > photosensitivity and broke out into a terrible rash wherever I was > > exposed to the sun. > > > > Back to the rheumy - Now she says... " You're a lupus lady " . Stop the > > plaquenil, ramp down on the prednisone and start Imuran. Needless to > > say - none of it was helping with the pain. At this point I was > > still working 50 hours a week at a very stressful job managing > > millions of dollars. > > > > Next visit , Oct 7th was told - you have RA with lupus > > characterisitics. Stop the Imuran and start injecting Humira. At > > that point she wanted me to take time off of work, but being the over > > achiever that I am - I said no and toughed it out for two more weeks > > at which point I was in so much pain - I have no idea how I managed > > to even get out of bed, much less to work. > > > > I now am going into my 5th week off of work. Rheumy has me out for 8 > > weeks then will re-evaluate to see if I can go back to work. I just > > had my 4th injection of Humira this morning, and I am wondering when > > I will begin to get some releif from all the pain. I am still > > popping the Vicoden (maybe one a day) - less than I was taking while > > working. I don't have to tell you guys where it hurts....EVERYWHERE!! > > > > It's like someone is stabbing a fork into the back of my hand and > > then dragging it down to my fingers thru all the joints and tendons. > > Ice picks in my knees, hips, ankles and even toes. (Don't even get > > me started about the fatigue). > > > > You all are right about people not really understanding about what we > > are going thru. I don't think it's that they don't want to > > understand, I just think that they can't if they are not experiencing > > this. My dear husband is doing his best to understand and be > > compassionate - he opens every bottle or can, cuts up all veggies or > > meat to be cooked, and is definitely in charge of browning ground > > beef - which is very painful with all the stirring. > > > > My new goals are to take a shower, get dressed and cook dinner. And > > on somedays that can be quite the battle. I have been lurking for a > > couple of weeks now and wanted to thank you all for the articles and > > posts. You have helped me a great deal. Sorry this is so long, but > > I am working on opening up to others and to allow myself to be helped > > and supported. > > > > Thanks again!! > > Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Hi , thanks for the reply. I think what she actually said was RA with Lupus characteristics. I'm not sure about all of the blood tests. I keep bugging the hospital where I get my blood work done to send me the results, but they are very busy and probably forgot. This is a good reminder for me to call them again to try to get copies of the results. I am going to give the humira a chance to work, and then see what to do. My next appoinment is coming up next week, so I can ask about it then. Hope you have a happy thanksgiving. Stacey > Stacey, perhaps you should consider a second opinion. > > As a pointed out a few days ago, getting the correct diagnosis isn't > always easy and having both RA and lupus, unless you are talking about > an overlap syndrome, is uncommon. > > Not only that, but, if it is lupus, Humira (adalimumab) may not be a > good choice for treatment. Although it is being studied, treatment of > lupus with the anti-TNF biologics is controversial. Some researchers and > rheumatologists worry that the TNF blockers may exacerbate lupus. > > Did any of your physicians do any tests for lupus more specific than the > ANA such as anti-Sm or anti-dsDNA? > > > > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] Re: Another new one! > > > > > > > > > > Hi , Larry, Nea and all other newbies!! > > > > I, too am new to this group and have been busy reading all of the > > posts, advice and recipies. It is so wonderful to realize that I am > > not alone in this!! > > > > I am recently diagnosed with RA and Lupus. I was told by a > > chiropractor a couple of years ago that I had FM, and then about 4 > > months ago I started having INCREDIBLE amounts of pain. At the same > > time, I had some blood tests following surgery that had a positive > > ANA result. > > > > At the time, the dr. told me that it was normal for that to be high > > after my type of surgery, and come back in a month to get retested. > > If it was still positive, then they would send me to a rheumy. The > > next day I called and made an appointment with a rhuemy. Good thing > > I did - as it takes 6-8 weeks to get an initial appointment. > > > > A few weeks away from the appointment, I was in so much pain, I > > couldn't even hold a folder of papers in my hands without it hurting > > me. I went to the GP and did blood tests for Lymes, 5th disease, > > ANA, thyroid, and a bunch of other things I can't remember. And I > > got some Vicoden. > > > > The thyroid was high, so went to an endocrinolgist. No thyroid > > problems he said. In the parking lot, I broke down in tears to my > > husband saying, " the next person who tells me they don't know what's > > wrong with me, I am going to stand up on their desk and start > > screaming. " > > > > The 1st appt with the rheumy I was armed with the blood test > > results. She first said, hypothyroid, and " non-specific connective > > tissue disease " . I started on plaquenil and prednisone. The > > prednisone helped for a while, but then I developed SEVERE > > photosensitivity and broke out into a terrible rash wherever I was > > exposed to the sun. > > > > Back to the rheumy - Now she says... " You're a lupus lady " . Stop the > > plaquenil, ramp down on the prednisone and start Imuran. Needless to > > say - none of it was helping with the pain. At this point I was > > still working 50 hours a week at a very stressful job managing > > millions of dollars. > > > > Next visit , Oct 7th was told - you have RA with lupus > > characterisitics. Stop the Imuran and start injecting Humira. At > > that point she wanted me to take time off of work, but being the over > > achiever that I am - I said no and toughed it out for two more weeks > > at which point I was in so much pain - I have no idea how I managed > > to even get out of bed, much less to work. > > > > I now am going into my 5th week off of work. Rheumy has me out for 8 > > weeks then will re-evaluate to see if I can go back to work. I just > > had my 4th injection of Humira this morning, and I am wondering when > > I will begin to get some releif from all the pain. I am still > > popping the Vicoden (maybe one a day) - less than I was taking while > > working. I don't have to tell you guys where it hurts....EVERYWHERE!! > > > > It's like someone is stabbing a fork into the back of my hand and > > then dragging it down to my fingers thru all the joints and tendons. > > Ice picks in my knees, hips, ankles and even toes. (Don't even get > > me started about the fatigue). > > > > You all are right about people not really understanding about what we > > are going thru. I don't think it's that they don't want to > > understand, I just think that they can't if they are not experiencing > > this. My dear husband is doing his best to understand and be > > compassionate - he opens every bottle or can, cuts up all veggies or > > meat to be cooked, and is definitely in charge of browning ground > > beef - which is very painful with all the stirring. > > > > My new goals are to take a shower, get dressed and cook dinner. And > > on somedays that can be quite the battle. I have been lurking for a > > couple of weeks now and wanted to thank you all for the articles and > > posts. You have helped me a great deal. Sorry this is so long, but > > I am working on opening up to others and to allow myself to be helped > > and supported. > > > > Thanks again!! > > Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 And perhaps Stacey your doctor is correct. There are some of us who do have both RA and Lupus. It is never wrong to get a second opinion and even helpful to hear how different doctors explain the disease(s) as it affects you. Although you will hear time and time again on this list how uncommon or even rare it is to have both RA and Lupus, I have found and have had physicians with a specialty in Rheumatology tell me that it is in fact possible to have both diseases, partly because today we have the technology and research to help define the characteristics of both diseases and that perhaps in years to come we will learn that what was once thought to be uncommon or rare is not so uncommon or rare afterall. There are those of us who have both RA and Lupus, who have had very specific tests and medical workups to determine that both diseases are present and who do take medications for both diseases including the anti-TNF biologics. Speaking only for myself, it was not helpful at all when I was diagnosed with both diseases to have others tell me how unlikely this diagnosis was. We already deal with disbelief in an invisible disease in our day to day lives, to hear it on this list was absurd. It has taken me 1.5 years to gain the confidence in my own understanding of the two diseases to speak out today and it is not my intent to start a controversy - only to say, keep seeing your doctors, keep having tests run (as pointed out, there are some specific tests that help make the diagnosis), keep asking questions, keep learning about both diseases. Find one doctor (for me it was my primary internist) with whom you can bounce ideas and ask questions about the spcialists that you will need to see so that together you can build a team of doctors to treat the various components of these diseases....while being diagnosed with both may not be that unusual, the treatment is more complex. Do not hesitate to change doctors until you have a medical team who work together or learn what you can do to help that team work together - it might mean you will have to make copies of your labs to give to your doctors so they are all on the same page with your treatment. I have learned to keep on my computer a list of all my diagnosis, the doctor treating that disease, the medication for that disease along with phone/fax numbers and I take an updated copy to each medical appt and hand to the nurse for inclusion in my file. These suggestions are probably good for any disease diagnosis but particularly if you do have both RA and Lupus or if it is RA and Lupus overlap syndrome. Granted, if you have both diseases or the overlap syndrome, you will likely find you will be under careful monitoring and require deligence in doing your labs - just as those patients who have RA and any of the other auto-immune diseases. Janie ----- Original Message ----- Stacey, perhaps you should consider a second opinion. As a pointed out a few days ago, getting the correct diagnosis isn't always easy and having both RA and lupus, unless you are talking about an overlap syndrome, is uncommon. Not only that, but, if it is lupus, Humira (adalimumab) may not be a good choice for treatment. Although it is being studied, treatment of lupus with the anti-TNF biologics is controversial. Some researchers and rheumatologists worry that the TNF blockers may exacerbate lupus. Did any of your physicians do any tests for lupus more specific than the ANA such as anti-Sm or anti-dsDNA? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 And perhaps Stacey your doctor is correct. There are some of us who do have both RA and Lupus. It is never wrong to get a second opinion and even helpful to hear how different doctors explain the disease(s) as it affects you. Although you will hear time and time again on this list how uncommon or even rare it is to have both RA and Lupus, I have found and have had physicians with a specialty in Rheumatology tell me that it is in fact possible to have both diseases, partly because today we have the technology and research to help define the characteristics of both diseases and that perhaps in years to come we will learn that what was once thought to be uncommon or rare is not so uncommon or rare afterall. There are those of us who have both RA and Lupus, who have had very specific tests and medical workups to determine that both diseases are present and who do take medications for both diseases including the anti-TNF biologics. Speaking only for myself, it was not helpful at all when I was diagnosed with both diseases to have others tell me how unlikely this diagnosis was. We already deal with disbelief in an invisible disease in our day to day lives, to hear it on this list was absurd. It has taken me 1.5 years to gain the confidence in my own understanding of the two diseases to speak out today and it is not my intent to start a controversy - only to say, keep seeing your doctors, keep having tests run (as pointed out, there are some specific tests that help make the diagnosis), keep asking questions, keep learning about both diseases. Find one doctor (for me it was my primary internist) with whom you can bounce ideas and ask questions about the spcialists that you will need to see so that together you can build a team of doctors to treat the various components of these diseases....while being diagnosed with both may not be that unusual, the treatment is more complex. Do not hesitate to change doctors until you have a medical team who work together or learn what you can do to help that team work together - it might mean you will have to make copies of your labs to give to your doctors so they are all on the same page with your treatment. I have learned to keep on my computer a list of all my diagnosis, the doctor treating that disease, the medication for that disease along with phone/fax numbers and I take an updated copy to each medical appt and hand to the nurse for inclusion in my file. These suggestions are probably good for any disease diagnosis but particularly if you do have both RA and Lupus or if it is RA and Lupus overlap syndrome. Granted, if you have both diseases or the overlap syndrome, you will likely find you will be under careful monitoring and require deligence in doing your labs - just as those patients who have RA and any of the other auto-immune diseases. Janie ----- Original Message ----- Stacey, perhaps you should consider a second opinion. As a pointed out a few days ago, getting the correct diagnosis isn't always easy and having both RA and lupus, unless you are talking about an overlap syndrome, is uncommon. Not only that, but, if it is lupus, Humira (adalimumab) may not be a good choice for treatment. Although it is being studied, treatment of lupus with the anti-TNF biologics is controversial. Some researchers and rheumatologists worry that the TNF blockers may exacerbate lupus. Did any of your physicians do any tests for lupus more specific than the ANA such as anti-Sm or anti-dsDNA? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Stacey wrote: Thank you for your message. I don't know if you saw my reply - but I believe what the rheumy said was RA with Lupus characteristics or RA with Lupus Traits. I believe that is called " Rheupus " . :-) Love and Prayers, Beth ~*~*~*~*~*~*~*~* Philippians 4:8 (The Message): Friends, I'd say you'll do best by filling your minds and meditating on things that are true, noble, reputable, authentic, compelling, gracious -- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. ~*~*~*~*~*~*~*~* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Stacey wrote: Thank you for your message. I don't know if you saw my reply - but I believe what the rheumy said was RA with Lupus characteristics or RA with Lupus Traits. I believe that is called " Rheupus " . :-) Love and Prayers, Beth ~*~*~*~*~*~*~*~* Philippians 4:8 (The Message): Friends, I'd say you'll do best by filling your minds and meditating on things that are true, noble, reputable, authentic, compelling, gracious -- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. ~*~*~*~*~*~*~*~* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Hi Bill and Janie, Thank you for your message. I don't know if you saw my reply - but I believe what the rheumy said was RA with Lupus characteristics or RA with Lupus Traits. I do have an appoinment with her this week, and have gone in about every 4-6 weeks since this all started. My rheumy is a memeber of the American College of Rheumatology, and affiliated with the Mayo Clinic here in Minnesota - so I feel good about continuing treatment with her. I have been taking notes about my symptoms in a little notebook (and my husband does it when my hands hurt too much to write) - so I will bring that and my list of questions. I do need to get a copy of my recent blood tests to my GP - however, I have not really been to see him since I stated with the rheumy. I am reading a book about living with ICI (invisible chronic illness) and am seeing a therapist to help me to adapt to my new condition. I appreciate everyone's ideas - I like your idea about maintaining a file of new lab results, dx's, etc and bringing them to the different doctors. What I most like about this list is how open and caring everyone is - that we can all bounce ideas around and discuss treatment options....and I also enjoy reading about new treatment research - it gives me hope that someday we will be able to beat this thing. I hope everyone enjoyed the Thanksgiving weekend - will let you all know how it goes at the rheumy this week. Stacey > > And perhaps Stacey your doctor is correct. There are some of us who do have both RA and Lupus. It is never wrong to get a second opinion and even helpful to hear how different doctors explain the disease(s) as it affects you. Although you will hear time and time again on this list how uncommon or even rare it is to have both RA and Lupus, I have found and have had physicians with a specialty in Rheumatology tell me that it is in fact possible to have both diseases, partly because today we have the technology and research to help define the characteristics of both diseases and that perhaps in years to come we will learn that what was once thought to be uncommon or rare is not so uncommon or rare afterall. There are those of us who have both RA and Lupus, who have had very specific tests and medical workups to determine that both diseases are present and who do take medications for both diseases including the anti-TNF biologics. > > Speaking only for myself, it was not helpful at all when I was diagnosed with both diseases to have others tell me how unlikely this diagnosis was. We already deal with disbelief in an invisible disease in our day to day lives, to hear it on this list was absurd. It has taken me 1.5 years to gain the confidence in my own understanding of the two diseases to speak out today and it is not my intent to start a controversy - only to say, keep seeing your doctors, keep having tests run (as pointed out, there are some specific tests that help make the diagnosis), keep asking questions, keep learning about both diseases. Find one doctor (for me it was my primary internist) with whom you can bounce ideas and ask questions about the spcialists that you will need to see so that together you can build a team of doctors to treat the various components of these diseases....while being diagnosed with both may not be that unusual, the treatment is more complex. Do not hesitate to change doctors until you have a medical team who work together or learn what you can do to help that team work together - it might mean you will have to make copies of your labs to give to your doctors so they are all on the same page with your treatment. I have learned to keep on my computer a list of all my diagnosis, the doctor treating that disease, the medication for that disease along with phone/fax numbers and I take an updated copy to each medical appt and hand to the nurse for inclusion in my file. These suggestions are probably good for any disease diagnosis but particularly if you do have both RA and Lupus or if it is RA and Lupus overlap syndrome. Granted, if you have both diseases or the overlap syndrome, you will likely find you will be under careful monitoring and require deligence in doing your labs - just as those patients who have RA and any of the other auto-immune diseases. > > Janie > > ----- Original Message ----- > > Stacey, perhaps you should consider a second opinion. > > As a pointed out a few days ago, getting the correct diagnosis isn't > always easy and having both RA and lupus, unless you are talking about > an overlap syndrome, is uncommon. > > Not only that, but, if it is lupus, Humira (adalimumab) may not be a > good choice for treatment. Although it is being studied, treatment of > lupus with the anti-TNF biologics is controversial. Some researchers and > rheumatologists worry that the TNF blockers may exacerbate lupus. > > Did any of your physicians do any tests for lupus more specific than the > ANA such as anti-Sm or anti-dsDNA? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Hi Bill and Janie, Thank you for your message. I don't know if you saw my reply - but I believe what the rheumy said was RA with Lupus characteristics or RA with Lupus Traits. I do have an appoinment with her this week, and have gone in about every 4-6 weeks since this all started. My rheumy is a memeber of the American College of Rheumatology, and affiliated with the Mayo Clinic here in Minnesota - so I feel good about continuing treatment with her. I have been taking notes about my symptoms in a little notebook (and my husband does it when my hands hurt too much to write) - so I will bring that and my list of questions. I do need to get a copy of my recent blood tests to my GP - however, I have not really been to see him since I stated with the rheumy. I am reading a book about living with ICI (invisible chronic illness) and am seeing a therapist to help me to adapt to my new condition. I appreciate everyone's ideas - I like your idea about maintaining a file of new lab results, dx's, etc and bringing them to the different doctors. What I most like about this list is how open and caring everyone is - that we can all bounce ideas around and discuss treatment options....and I also enjoy reading about new treatment research - it gives me hope that someday we will be able to beat this thing. I hope everyone enjoyed the Thanksgiving weekend - will let you all know how it goes at the rheumy this week. Stacey > > And perhaps Stacey your doctor is correct. There are some of us who do have both RA and Lupus. It is never wrong to get a second opinion and even helpful to hear how different doctors explain the disease(s) as it affects you. Although you will hear time and time again on this list how uncommon or even rare it is to have both RA and Lupus, I have found and have had physicians with a specialty in Rheumatology tell me that it is in fact possible to have both diseases, partly because today we have the technology and research to help define the characteristics of both diseases and that perhaps in years to come we will learn that what was once thought to be uncommon or rare is not so uncommon or rare afterall. There are those of us who have both RA and Lupus, who have had very specific tests and medical workups to determine that both diseases are present and who do take medications for both diseases including the anti-TNF biologics. > > Speaking only for myself, it was not helpful at all when I was diagnosed with both diseases to have others tell me how unlikely this diagnosis was. We already deal with disbelief in an invisible disease in our day to day lives, to hear it on this list was absurd. It has taken me 1.5 years to gain the confidence in my own understanding of the two diseases to speak out today and it is not my intent to start a controversy - only to say, keep seeing your doctors, keep having tests run (as pointed out, there are some specific tests that help make the diagnosis), keep asking questions, keep learning about both diseases. Find one doctor (for me it was my primary internist) with whom you can bounce ideas and ask questions about the spcialists that you will need to see so that together you can build a team of doctors to treat the various components of these diseases....while being diagnosed with both may not be that unusual, the treatment is more complex. Do not hesitate to change doctors until you have a medical team who work together or learn what you can do to help that team work together - it might mean you will have to make copies of your labs to give to your doctors so they are all on the same page with your treatment. I have learned to keep on my computer a list of all my diagnosis, the doctor treating that disease, the medication for that disease along with phone/fax numbers and I take an updated copy to each medical appt and hand to the nurse for inclusion in my file. These suggestions are probably good for any disease diagnosis but particularly if you do have both RA and Lupus or if it is RA and Lupus overlap syndrome. Granted, if you have both diseases or the overlap syndrome, you will likely find you will be under careful monitoring and require deligence in doing your labs - just as those patients who have RA and any of the other auto-immune diseases. > > Janie > > ----- Original Message ----- > > Stacey, perhaps you should consider a second opinion. > > As a pointed out a few days ago, getting the correct diagnosis isn't > always easy and having both RA and lupus, unless you are talking about > an overlap syndrome, is uncommon. > > Not only that, but, if it is lupus, Humira (adalimumab) may not be a > good choice for treatment. Although it is being studied, treatment of > lupus with the anti-TNF biologics is controversial. Some researchers and > rheumatologists worry that the TNF blockers may exacerbate lupus. > > Did any of your physicians do any tests for lupus more specific than the > ANA such as anti-Sm or anti-dsDNA? > > > Quote Link to comment Share on other sites More sharing options...
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