Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Judi, yes, every treatment for Dercum's will be off-label at this point, but the prescribing physicians have to have some rationale for using particular therapies. Compile all of the evidence, anecdotal and research-based, you have that TNF may be involved. I'm not sure how many people from your group went to Mayo and when it was or under what circumstances (did they have multidisciplinary consultations which are recommended in cases like yours?), but there are dozens of excellent physicians there in the various departments (most likely for you: dermatology, rheumatology, endocrinology, neurology, and oncology) who could have valuable input. As Elaine pointed out, all it takes is one physician. Or what about going for a multidisciplinary consultation at s Hopkins? Or the leads you have overseas via your group? Have you tried contacting any of the physicians in the US who have published articles on Dercum's? Would you consider traveling to see your list friend's physician? Have you tried the IV lidocaine therapy I've read about? Again, I can feel your frustration, and I am so sorry you are suffering. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Re: Rejected-- > > > Hi , > > Well my GP wants nothiing to do with the case. That's why he > referred me to the rheumy, and she wouldn't discuss it with the other > doctor either. I understand their concern at using something off > label, but everything we take for this disease is off label! > > About Mayo, we've had several people go there, with the result that > they really don't know what to do either, and they are not doing any > studies either. Sounds like we're at a dead end, unless I can > magically contract RA! > > Thanks anyway, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Judi, yes, every treatment for Dercum's will be off-label at this point, but the prescribing physicians have to have some rationale for using particular therapies. Compile all of the evidence, anecdotal and research-based, you have that TNF may be involved. I'm not sure how many people from your group went to Mayo and when it was or under what circumstances (did they have multidisciplinary consultations which are recommended in cases like yours?), but there are dozens of excellent physicians there in the various departments (most likely for you: dermatology, rheumatology, endocrinology, neurology, and oncology) who could have valuable input. As Elaine pointed out, all it takes is one physician. Or what about going for a multidisciplinary consultation at s Hopkins? Or the leads you have overseas via your group? Have you tried contacting any of the physicians in the US who have published articles on Dercum's? Would you consider traveling to see your list friend's physician? Have you tried the IV lidocaine therapy I've read about? Again, I can feel your frustration, and I am so sorry you are suffering. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Re: Rejected-- > > > Hi , > > Well my GP wants nothiing to do with the case. That's why he > referred me to the rheumy, and she wouldn't discuss it with the other > doctor either. I understand their concern at using something off > label, but everything we take for this disease is off label! > > About Mayo, we've had several people go there, with the result that > they really don't know what to do either, and they are not doing any > studies either. Sounds like we're at a dead end, unless I can > magically contract RA! > > Thanks anyway, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Hang in there Judi. Keep fighting the good fight. You are in my prayers - while Remicade has not been a miracle for me it has helped. The biggest " miracle " for me - last Thursday was my most recent treatment. New nurse- got the IV started on the first poke. She and I were both ecstatic. Hang in there kid. You have so much on your plate. Holiday hugs to you and your husband. Peace, -------------- Original message ---------------------- From: " nonny46 " <nonny46@...> > > > , > > I'm an hour and a half southeast of Indy, but I have been to IU--was > examined by 70 doctors in a conference there. They don't know what > to do either. So far only one person has tried the Remicade/MTX > treatment, and her results have been very good, that's why I would > like to try it. Someone somewhere has to be the guinea pig to see if > it works on DD alone. My insurance company didn't balk at treatment > with Interferon, and I don't think they would now, but they have to > be approached. And, as I told , Mayo pretty much just threw up > their hands when others with the disease went there. But thanks for > all the positive answers! > > Judi > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Hang in there Judi. Keep fighting the good fight. You are in my prayers - while Remicade has not been a miracle for me it has helped. The biggest " miracle " for me - last Thursday was my most recent treatment. New nurse- got the IV started on the first poke. She and I were both ecstatic. Hang in there kid. You have so much on your plate. Holiday hugs to you and your husband. Peace, -------------- Original message ---------------------- From: " nonny46 " <nonny46@...> > > > , > > I'm an hour and a half southeast of Indy, but I have been to IU--was > examined by 70 doctors in a conference there. They don't know what > to do either. So far only one person has tried the Remicade/MTX > treatment, and her results have been very good, that's why I would > like to try it. Someone somewhere has to be the guinea pig to see if > it works on DD alone. My insurance company didn't balk at treatment > with Interferon, and I don't think they would now, but they have to > be approached. And, as I told , Mayo pretty much just threw up > their hands when others with the disease went there. But thanks for > all the positive answers! > > Judi > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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