Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi Rose Ann, I can sympathize sooooooooo much with what you've been going through as well. I have "actively" been battling this disease now for a year and before that from doctor to doctor - Mayo Clinic - specialists etc. The time I FINALLY got a diagnosis and treatment and relief was after I went to a rheumatologist. We currently are trying different meds to try to get it to go in remission and to give me some sort of "quality" of life as he put it. He has come up with all sorts of things to do and try and meds and we are a team and continue working at it and I see him regularly every 6 weeks to 3 months to update whats happening and then we decide what to try next or what to continue. Prednisone seems to help when the relapses come which seem every 2 weeks - I have been on plaquinal, methotrexate, Folguard, and colcidrine (sp.?) and now I am about to try that cellcept and get a little more aggressive. But I really do feel their specialty is better than just internists and such. they are up on all the autoimmune inf much more than other doctors and see more patients with similar symptoms. Of course as you well know this is so rare, its not like they will have 50 patients with the same thing, but I feel I have gotten further ahead since seeing my rheumatologist than any other doctor. I actually had this 11 years ago and treated for something else, it went away, came back, treated again for something else, went to Mayo, on and on and on. Totaling 11 years to date. So even tho it has gotten worse and more frequent episodes, I feel I at least know what this is and what I'm up against and that this specialist is the best to be seeing. Good luck to you. I hope I have helped a little. Carol Back (in Phoenix) rheumatologist Hi EveryoneI hope someone can help me, I have been diagnosed with EN going on 9mos now, which as you know seems like a lifetime. My legs are getting so bad, to the point that the anti-inflammatories, that currently taking aren't helping. My primary physician, wants me to go to a rheumatologist. My questions are: Has anyone gone to one for EN?And if so what can they do that a primary can't? I appreciate any helpThanks Rose Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi Rose Ann, I can sympathize sooooooooo much with what you've been going through as well. I have "actively" been battling this disease now for a year and before that from doctor to doctor - Mayo Clinic - specialists etc. The time I FINALLY got a diagnosis and treatment and relief was after I went to a rheumatologist. We currently are trying different meds to try to get it to go in remission and to give me some sort of "quality" of life as he put it. He has come up with all sorts of things to do and try and meds and we are a team and continue working at it and I see him regularly every 6 weeks to 3 months to update whats happening and then we decide what to try next or what to continue. Prednisone seems to help when the relapses come which seem every 2 weeks - I have been on plaquinal, methotrexate, Folguard, and colcidrine (sp.?) and now I am about to try that cellcept and get a little more aggressive. But I really do feel their specialty is better than just internists and such. they are up on all the autoimmune inf much more than other doctors and see more patients with similar symptoms. Of course as you well know this is so rare, its not like they will have 50 patients with the same thing, but I feel I have gotten further ahead since seeing my rheumatologist than any other doctor. I actually had this 11 years ago and treated for something else, it went away, came back, treated again for something else, went to Mayo, on and on and on. Totaling 11 years to date. So even tho it has gotten worse and more frequent episodes, I feel I at least know what this is and what I'm up against and that this specialist is the best to be seeing. Good luck to you. I hope I have helped a little. Carol Back (in Phoenix) rheumatologist Hi EveryoneI hope someone can help me, I have been diagnosed with EN going on 9mos now, which as you know seems like a lifetime. My legs are getting so bad, to the point that the anti-inflammatories, that currently taking aren't helping. My primary physician, wants me to go to a rheumatologist. My questions are: Has anyone gone to one for EN?And if so what can they do that a primary can't? I appreciate any helpThanks Rose Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi Carol Thanks for replying, my appointment is not until March 17th, I am hoping they will call me with a cancelation. I am on my feet all day long, so by the time I get home, my legs are killing me. I hear about how everyone's ankles are swollen,its actually my legs they are swollen, I can't even where knee hi's because it cuts into my legs. I don't know how you lived with this for 11 years! About Prednisone, I already take it for my asthma, a couple of months my doc gave me a Kenalog shot, didn't help and even screwed my period up for 3 mos. Won't ever have that injection again! Rose Ann (Canton, Ohio) -- In erythema_nodosum_Group , " Carol Back " wrote: > > Hi Rose Ann, > I can sympathize sooooooooo much with what you've been going through as well. I have " actively " been battling this disease now for a year and before that from doctor to doctor - Mayo Clinic - specialists etc. The time I FINALLY got a diagnosis and treatment and relief was after I went to a rheumatologist. We currently are trying different meds to try to get it to go in remission and to give me some sort of " quality " of life as he put it. He has come up with all sorts of things to do and try and meds and we are a team and continue working at it and I see him regularly every 6 weeks to 3 months to update whats happening and then we decide what to try next or what to continue. Prednisone seems to help when the relapses come which seem every 2 weeks - I have been on plaquinal, methotrexate, Folguard, and colcidrine (sp.?) and now I am about to try that cellcept and get a little more aggressive. But I really do feel their specialty is better than just internists and such. they are up on all the autoimmune inf much more than other doctors and see more patients with similar symptoms. Of course as you well know this is so rare, its not like they will have 50 patients with the same thing, but I feel I have gotten further ahead since seeing my rheumatologist than any other doctor. I actually had this 11 years ago and treated for something else, it went away, came back, treated again for something else, went to Mayo, on and on and on. Totaling 11 years to date. So even tho it has gotten worse and more frequent episodes, I feel I at least know what this is and what I'm up against and that this specialist is the best to be seeing. Good luck to you. I hope I have helped a little. > Carol Back (in Phoenix) > rheumatologist > > > Hi Everyone > > I hope someone can help me, I have been diagnosed with EN going on > 9mos now, which as you know seems like a lifetime. My legs are > getting so bad, to the point that the anti-inflammatories, that > currently taking aren't helping. My primary physician, wants me to go > to a rheumatologist. My questions are: Has anyone gone to one for EN? > And if so what can they do that a primary can't? I appreciate any help > Thanks > Rose Ann > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Not to frighten you, but sometimes EN goes with something called sarcoidosis. That might be a pulmy, but a rheumy might help too. That might be what your doctor is thinking. Good luck! This is so NOT fun. Love, Joan ---- Rose Ann wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Not to frighten you, but sometimes EN goes with something called sarcoidosis. That might be a pulmy, but a rheumy might help too. That might be what your doctor is thinking. Good luck! This is so NOT fun. Love, Joan ---- Rose Ann wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 You brought up an excellent point, Joan! EN can be caused or triggered by so many things--about 100 known causes and probably more. There are several rather serious disorders including IBD (Crohn's and Ulcerative colitis), sarcoidosis that usually affects lungs and possibly other organs, Rheumatoid Arthritis, or even cancer to name a few. So you want to be treated by a specialist in the appropriate field. And then we have all those " extra intestional " manifestations that can affect us like problems with eyes. And of course the meds, especially prednisone, bring in a whole other array of promlems to be addressed like osteoporosis or osteopenia and possible diabetes. This is why it is so important to get thoroughly checked out. Also this is why it is hard to find an EN expert in the medical field. And why no doctor sees that much EN--we are spread out over so many specialties. Dermatologists will test for related disorders and send you to the proper specialist [if they can find the trigger]. If they can't they will try to treat you with the meds mentioned. EN is treated as the stepchild of disorders. This is adding insult to injury, in my opinion. If anyone has a doctor who is scratching his head over your EN, tell him about this Group. There is no shame in learning about a condition from the people who have lived with it--some of us for many decades. I think we could get further if we had a partnership with our doctors. The fact that not a single doctor has joined this group is a very sore point with me. For those in the US who have Presidents Day off today, Enjoy! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 You brought up an excellent point, Joan! EN can be caused or triggered by so many things--about 100 known causes and probably more. There are several rather serious disorders including IBD (Crohn's and Ulcerative colitis), sarcoidosis that usually affects lungs and possibly other organs, Rheumatoid Arthritis, or even cancer to name a few. So you want to be treated by a specialist in the appropriate field. And then we have all those " extra intestional " manifestations that can affect us like problems with eyes. And of course the meds, especially prednisone, bring in a whole other array of promlems to be addressed like osteoporosis or osteopenia and possible diabetes. This is why it is so important to get thoroughly checked out. Also this is why it is hard to find an EN expert in the medical field. And why no doctor sees that much EN--we are spread out over so many specialties. Dermatologists will test for related disorders and send you to the proper specialist [if they can find the trigger]. If they can't they will try to treat you with the meds mentioned. EN is treated as the stepchild of disorders. This is adding insult to injury, in my opinion. If anyone has a doctor who is scratching his head over your EN, tell him about this Group. There is no shame in learning about a condition from the people who have lived with it--some of us for many decades. I think we could get further if we had a partnership with our doctors. The fact that not a single doctor has joined this group is a very sore point with me. For those in the US who have Presidents Day off today, Enjoy! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Rose Ann It was a Rheumatologist (after a dermatologist)that I saw that finally analysed all my bloods and gave my diagnosis in respect of my EN. He was really helpful. I take prednisolone (I think in England it's prednisolone and in the US prednisone). It does help a lot but it's hard to know how long to take it for. My legs also swell too, particularly my left leg from a short way below my knee all the way down. That leg is generally swollen all the time. I have a difficulty wearing boots with a zip because I can never do the zip properly on my left leg. All the best for the appointment. Fi > > > > Hi Rose Ann, > > I can sympathize sooooooooo much with what you've been going > through as well. I have " actively " been battling this disease now > for a year and before that from doctor to doctor - Mayo Clinic - > specialists etc. The time I FINALLY got a diagnosis and treatment > and relief was after I went to a rheumatologist. We currently are > trying different meds to try to get it to go in remission and to give > me some sort of " quality " of life as he put it. He has come up with > all sorts of things to do and try and meds and we are a team and > continue working at it and I see him regularly every 6 weeks to 3 > months to update whats happening and then we decide what to try next > or what to continue. Prednisone seems to help when the relapses come > which seem every 2 weeks - I have been on plaquinal, methotrexate, > Folguard, and colcidrine (sp.?) and now I am about to try that > cellcept and get a little more aggressive. But I really do feel > their specialty is better than just internists and such. they are up > on all the autoimmune inf much more than other doctors and see more > patients with similar symptoms. Of course as you well know this is > so rare, its not like they will have 50 patients with the same thing, > but I feel I have gotten further ahead since seeing my rheumatologist > than any other doctor. I actually had this 11 years ago and treated > for something else, it went away, came back, treated again for > something else, went to Mayo, on and on and on. Totaling 11 years to > date. So even tho it has gotten worse and more frequent episodes, I > feel I at least know what this is and what I'm up against and that > this specialist is the best to be seeing. Good luck to you. I hope > I have helped a little. > > Carol Back (in Phoenix) > > rheumatologist > > > > > > Hi Everyone > > > > I hope someone can help me, I have been diagnosed with EN going > on > > 9mos now, which as you know seems like a lifetime. My legs are > > getting so bad, to the point that the anti-inflammatories, that > > currently taking aren't helping. My primary physician, wants me > to go > > to a rheumatologist. My questions are: Has anyone gone to one > for EN? > > And if so what can they do that a primary can't? I appreciate > any help > > Thanks > > Rose Ann > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Rose Ann It was a Rheumatologist (after a dermatologist)that I saw that finally analysed all my bloods and gave my diagnosis in respect of my EN. He was really helpful. I take prednisolone (I think in England it's prednisolone and in the US prednisone). It does help a lot but it's hard to know how long to take it for. My legs also swell too, particularly my left leg from a short way below my knee all the way down. That leg is generally swollen all the time. I have a difficulty wearing boots with a zip because I can never do the zip properly on my left leg. All the best for the appointment. Fi > > > > Hi Rose Ann, > > I can sympathize sooooooooo much with what you've been going > through as well. I have " actively " been battling this disease now > for a year and before that from doctor to doctor - Mayo Clinic - > specialists etc. The time I FINALLY got a diagnosis and treatment > and relief was after I went to a rheumatologist. We currently are > trying different meds to try to get it to go in remission and to give > me some sort of " quality " of life as he put it. He has come up with > all sorts of things to do and try and meds and we are a team and > continue working at it and I see him regularly every 6 weeks to 3 > months to update whats happening and then we decide what to try next > or what to continue. Prednisone seems to help when the relapses come > which seem every 2 weeks - I have been on plaquinal, methotrexate, > Folguard, and colcidrine (sp.?) and now I am about to try that > cellcept and get a little more aggressive. But I really do feel > their specialty is better than just internists and such. they are up > on all the autoimmune inf much more than other doctors and see more > patients with similar symptoms. Of course as you well know this is > so rare, its not like they will have 50 patients with the same thing, > but I feel I have gotten further ahead since seeing my rheumatologist > than any other doctor. I actually had this 11 years ago and treated > for something else, it went away, came back, treated again for > something else, went to Mayo, on and on and on. Totaling 11 years to > date. So even tho it has gotten worse and more frequent episodes, I > feel I at least know what this is and what I'm up against and that > this specialist is the best to be seeing. Good luck to you. I hope > I have helped a little. > > Carol Back (in Phoenix) > > rheumatologist > > > > > > Hi Everyone > > > > I hope someone can help me, I have been diagnosed with EN going > on > > 9mos now, which as you know seems like a lifetime. My legs are > > getting so bad, to the point that the anti-inflammatories, that > > currently taking aren't helping. My primary physician, wants me > to go > > to a rheumatologist. My questions are: Has anyone gone to one > for EN? > > And if so what can they do that a primary can't? I appreciate > any help > > Thanks > > Rose Ann > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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