Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi, I was wondering how many people have had similar experiences to mine. About 9 months ago I woke up with horrible pain in all bones and joints. Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to Rhumy. Went to Rhumy and got lots of blood tests - when they came back he was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next sent blood test results to hematologist. He diagnosed lupus. Next appt. rhumy says he is still undecided. Now my joints are permanently swollen on my fingers and still in considerable pain all the time. He told me to take TWO plaquenil instead of ONE per day and come back in December so he can see how the cold weather affects me. I have been suffering for almost a year now and see no real relief in sight. I am considering getting a second opinion. Is RA REALLY this hard to diagnose and can I afford to keep on waiting for help? Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Suzanne, RA is hard to diagnose, but it's got to be impossible if you only see the patient a couple times a year! If I were you, I'd seek a second opinion right away. Your rheumy should be working harder to diagnose you. Being in that much pain and swollen all the time is unacceptable. Where are you? If someone in this group is in your area, we might be able to give you a recommendation to a rheumy who cares (although we aren't all lucky enough to have one) or at least is more competant than the one you've got. When I was going through the process to get diagnosed, I was sure it was RA, rheumy was sure too but wouldn't say that much to me (just being cautious and not wanting to be wrong). I was responding well at first to typical RA things like Bextra, Vioxx and prednisone. They each worked for a time and then would stop working well enough. At first he said, it could be RA, it could be something else. Then it was, it is likely to be RA and it doesn't look like anything else. Then it was probably RA. After 9 months of carefully watching symptoms, documenting how I was feeling and reacting to medication, and monitoring bloodwork, he was ready to say it was RA. During that time I was going every 2, 4 or 8 weeks depending on how I was doing (shorter time if I was in pain or swollen, longer if I was doing well). And if something changed and I was weeks away from an appt, I'd call and they'd get me in right away. Jennie > Hi, I was wondering how many people have had similar experiences to mine. > About 9 months ago I woke up with horrible pain in all bones and joints. > Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to > Rhumy. Went to Rhumy and got lots of blood tests - when they came back he > was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next > sent blood test results to hematologist. He diagnosed lupus. Next appt. > rhumy says he is still undecided. Now my joints are permanently swollen on > my fingers and still in considerable pain all the time. He told me to take > TWO plaquenil instead of ONE per day and come back in December so he can see > how the cold weather affects me. I have been suffering for almost a year now > and see no real relief in sight. I am considering getting a second opinion. > Is RA REALLY this hard to diagnose and can I afford to keep on waiting for > help? > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Suzanne, RA is hard to diagnose, but it's got to be impossible if you only see the patient a couple times a year! If I were you, I'd seek a second opinion right away. Your rheumy should be working harder to diagnose you. Being in that much pain and swollen all the time is unacceptable. Where are you? If someone in this group is in your area, we might be able to give you a recommendation to a rheumy who cares (although we aren't all lucky enough to have one) or at least is more competant than the one you've got. When I was going through the process to get diagnosed, I was sure it was RA, rheumy was sure too but wouldn't say that much to me (just being cautious and not wanting to be wrong). I was responding well at first to typical RA things like Bextra, Vioxx and prednisone. They each worked for a time and then would stop working well enough. At first he said, it could be RA, it could be something else. Then it was, it is likely to be RA and it doesn't look like anything else. Then it was probably RA. After 9 months of carefully watching symptoms, documenting how I was feeling and reacting to medication, and monitoring bloodwork, he was ready to say it was RA. During that time I was going every 2, 4 or 8 weeks depending on how I was doing (shorter time if I was in pain or swollen, longer if I was doing well). And if something changed and I was weeks away from an appt, I'd call and they'd get me in right away. Jennie > Hi, I was wondering how many people have had similar experiences to mine. > About 9 months ago I woke up with horrible pain in all bones and joints. > Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to > Rhumy. Went to Rhumy and got lots of blood tests - when they came back he > was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next > sent blood test results to hematologist. He diagnosed lupus. Next appt. > rhumy says he is still undecided. Now my joints are permanently swollen on > my fingers and still in considerable pain all the time. He told me to take > TWO plaquenil instead of ONE per day and come back in December so he can see > how the cold weather affects me. I have been suffering for almost a year now > and see no real relief in sight. I am considering getting a second opinion. > Is RA REALLY this hard to diagnose and can I afford to keep on waiting for > help? > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Suzanne, Do you know why your rheumy is questioning the hematologist's diagnosis? There are very specific antibodies present in blood that can help with the diagnosis of lupus. If you get a copy of your blood tests, you can find out which tests were done and the results. If it's lupus or RA, plaquenil is prescribed and can be effective for both. It takes approximately 3 months for plaquenil to be effective, sometimes longer. Since you've had no improvement with plaquenil, the doctor increased your dose, which is pretty standard procedure. A second opinion is always a good idea. Different doctors treat differently and another doctor may be more aggressive than yours. Until you have a firm diagnosis, aggressive treatment can't be started. Since the research shows that early aggressive treatment has better outcomes, it is important to know what is going on. a > Hi, I was wondering how many people have had similar experiences to mine. > About 9 months ago I woke up with horrible pain in all bones and joints. > Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to > Rhumy. Went to Rhumy and got lots of blood tests - when they came back he > was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next > sent blood test results to hematologist. He diagnosed lupus. Next appt. > rhumy says he is still undecided. Now my joints are permanently swollen on > my fingers and still in considerable pain all the time. He told me to take > TWO plaquenil instead of ONE per day and come back in December so he can see > how the cold weather affects me. I have been suffering for almost a year now > and see no real relief in sight. I am considering getting a second opinion. > Is RA REALLY this hard to diagnose and can I afford to keep on waiting for > help? > > > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Suzanne, Do you know why your rheumy is questioning the hematologist's diagnosis? There are very specific antibodies present in blood that can help with the diagnosis of lupus. If you get a copy of your blood tests, you can find out which tests were done and the results. If it's lupus or RA, plaquenil is prescribed and can be effective for both. It takes approximately 3 months for plaquenil to be effective, sometimes longer. Since you've had no improvement with plaquenil, the doctor increased your dose, which is pretty standard procedure. A second opinion is always a good idea. Different doctors treat differently and another doctor may be more aggressive than yours. Until you have a firm diagnosis, aggressive treatment can't be started. Since the research shows that early aggressive treatment has better outcomes, it is important to know what is going on. a > Hi, I was wondering how many people have had similar experiences to mine. > About 9 months ago I woke up with horrible pain in all bones and joints. > Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to > Rhumy. Went to Rhumy and got lots of blood tests - when they came back he > was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next > sent blood test results to hematologist. He diagnosed lupus. Next appt. > rhumy says he is still undecided. Now my joints are permanently swollen on > my fingers and still in considerable pain all the time. He told me to take > TWO plaquenil instead of ONE per day and come back in December so he can see > how the cold weather affects me. I have been suffering for almost a year now > and see no real relief in sight. I am considering getting a second opinion. > Is RA REALLY this hard to diagnose and can I afford to keep on waiting for > help? > > > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Welcome, Suzanne! Yes, your story is similar to that of many in the group. If I were you, I would seek a second opinion from another rheumatologist. Has your current rheumatologist done any sort of imaging studies (X-rays, MRIs, ultrasounds) or any of your joints? Most often, rheumatologist take X-rays of the hands and/or feet if they are considering RA in the differential diagnosis. RA doesn't have to be difficult to diagnose, but often it is. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Diagnosis??? > Hi, I was wondering how many people have had similar experiences to mine. > About 9 months ago I woke up with horrible pain in all bones and joints. > Went to Dr. and tried Vioxx (zip) then Bextra (no help) then referred to > Rhumy. Went to Rhumy and got lots of blood tests - when they came back he > was " undecided " as to my diagnosis. Gave me prednisone and Plaquenil. Next > sent blood test results to hematologist. He diagnosed lupus. Next appt. > rhumy says he is still undecided. Now my joints are permanently swollen on > my fingers and still in considerable pain all the time. He told me to take > TWO plaquenil instead of ONE per day and come back in December so he can see > how the cold weather affects me. I have been suffering for almost a year now > and see no real relief in sight. I am considering getting a second opinion. > Is RA REALLY this hard to diagnose and can I afford to keep on waiting for > help? > > Suzanne Quote Link to comment Share on other sites More sharing options...
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