Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Definitely ask other doctors. Share the research you have done. Off label treatments are used all the time. S. > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi- Aren't you in Indianapolis? Could you check and see if someone in IU's medical school will see you - they often have clinical practice and are generally willing to look into areas that other docs won't. Also what about a Mayo referral? Dercum's is so rare - I am certain they would be willing to see you if your doc- either family practice or rheumy will refer. Docs there might know if Remicade would work in cases of Dercum's without RA.You can go without referral but it is more expensive. Just a thought. Also realize that Remicade isn't used for everyone with RA either. It took awhile for me to get approval. There is a protocol ( I am cynical enought to think it is controlled by medical insurance companies.) How does MTX impact Dercum's? They won't prescribe Remicade alone here - without methotrexate combination. I am sure it would be difficult to get referral for insurance purposes if Remicade not usual treatment. Hang in there - it will work out. Hugs, -------------- Original message ---------------------- From: " nonny46 " <nonny46@...> > > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi, I will say a special prayer for you and that you will be directed to the right doctors to help you. Blessings, April nonny46 <nonny46@...> wrote: Hello all, Well I saw the rheumy yesterday, but she completely refused to treat me. for those of you who don't know, I have Dercum's Disease, a rare disease. Recently a member of my DD support group started Remicade/MTX because she also has RA and AS. But she and her doctor found that the Remicade was also shrinking the Dercum's tumors. My GP referred me to the rheumy for possible treatment, and she refused because the treatment would be " off label. " She said as soon as there is some research (not likely) or approval by the manufacturer (also not likely) she would think about it. Needless to say, I was not happy. Well, actually, I had a major meltdown when we got to the car. Imagine knowing there is a drug that will relieve or remove your symptoms, and being told you can't have it! I won't quit fighting, or searching, but today I'm just gonna lie low and lick my wounds. Thanks for listening, Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 sorry judi. hope you feel better soon kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi- I will also be praying for direction in finding the right doctor and the right treatment for you. I know you must feel like that doctor just pulled the rug out from under you. That must mean that God has somebody better prepared to help you, right? Hang in there. I am new to the board, but have read many of your posts. They show what a positive, caring person you are, and you have blessed and encouraged through your example. God bless Jane > > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry, Judi. That must be so disappointing. What's the chance your GP can contact your list friend's physician and discuss the issue? Your GP and rheumatologist are in a tight spot because Dercum's is rare - it's cause and optimal treatments are unknown. They have to be able to justify the off-label use of Remicade to treat it - not just from a monetary standpoint, but in terms of safety, too. They have to have reason to believe that excess TNF is part of your problem. They are responsible should you have a serious adverse reaction. I continue to be partial to the Mayo idea, and I was happy to see mention it, too. Don't lose hope! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Rejected > > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi, you need to get somebody to start a study on Dercum's, and then be in the study. Where did you go that time when all of those doctors viewed you? Was that at a medical school? If so, maybe they could be persuaded to do a study. We're all pulling for you. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi, I'm so sorry, but don't give up. I would find another rheumy, one who will listen to you, and help the way they are suppose to. I will keep you in my prayers Judi, hugs T > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Go get a second opinion. Or even a third opinion if neccessary. They should at least be willing to look into it for themselves. What about calling the Remicade support line and see what information you can get from them?? Hang in there, Judi. I will keep you in my prayers tonight.......Marina in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi, I understand your feeling of hopelessness and despair right now, but futile as it may seem please don't give up. With prayer and hope anything is possible. Maybe my case will give you a glimmer of hope. I was dx'd with a rare incureable disease 7 1/2 years ago. At one point I was given six months to live and then my first miracle. I improved significantly. Then I worsened. I was given no more than 3 years to live (that was six years ago). I continued to worsen and the doctors could replicate all of the symptoms I complained of yet the " ultimate lab criteria " for treatment wasn't what was needed to justify treatment. Some doctors said it was in my head, others agreed I was sick but couldn't treat because of acceptable protocol.....i.e. meeting the acceptable criteria for treatment. I deteriorated to the point I could do little more than get out of bed to go potty and even that was a major effort. Could not even boil myself a hotdog. Finally my doctors (the team I finally ended up with that was just as frustrated as me but didn't know what to do for me as they weren't familiar enough with the rare disease I have to feel competent to treat.....and no one knew where to begin to treat) convinced me to see yet one more doctor and get listed for a lung transplant. It was the lung transplant doctor that immediately (after careful exam of me and my records) suggested a new treatment that even doctors familiar with the drug probably would not have prescribed based on their prior reactions. I began the new drug just about a year ago and it has been my miracle drug. No, I am not cured nor has this drug ever cured anyone. But I have significantly improved. We don't know what the long term outcome will be but at least for now I have some of the life back that I'd lost. The point of my sharing is I had been ready to quit fighting, to quit looking for another doctor. I had been to terciary centers. I had seen or had my records reviewed by hundreds of doctors; I lost count of how many I'd seen in person, one on one, at around a hundred. They all shook their heads, most who could treat wouldn't. But it only took one! I don't have Dercum's. But I truly feel as if we traded the names of our diseases our stories would have more similarities than differences. I had to work to find the right doctors. When I found doctors who refused to give up, it was them that gave me the ultimate push (no, very heavy shove) to convince me to take that one last drastic step to see another well chosen doctor. Like you I shed many a tear. I also prayed a lot and had a lot of people praying for me. You have all of us praying for you. You have all of us sending the most positive vibes we can and are a huge rooting section. We believe in you. We believe that somewhere there is a doctor who will be willing to give you the try you so richly deserve. I don't promise the path will be easy, but with all of us behind you and all of our prayers, you can do it. Remember that sometimes help comes where you least expect it. I'm still not able to read all of my digests, but I've followed your plight the best I can. My heart goes out to you and you are always in my prayers. If ever there is anything I can do for you, I'm available by private email or you can ask a to contact me and alert me to a list email. I'm sure she'd be happy to do that. I'm sorry this is so long but I can't get you off of my mind. My heart truly breaks for you and the pain and suffering you are feeling. God bless you, keep you and give you strength. Elaine > > Hello all, > > Well I saw the rheumy yesterday, but she completely refused to treat > me. for those of you who don't know, I have Dercum's Disease, a rare > disease. Recently a member of my DD support group started > Remicade/MTX because she also has RA and AS. But she and her doctor > found that the Remicade was also shrinking the Dercum's tumors. My > GP referred me to the rheumy for possible treatment, and she refused > because the treatment would be " off label. " She said as soon as > there is some research (not likely) or approval by the manufacturer > (also not likely) she would think about it. > > Needless to say, I was not happy. Well, actually, I had a major > meltdown when we got to the car. Imagine knowing there is a drug > that will relieve or remove your symptoms, and being told you can't > have it! I won't quit fighting, or searching, but today I'm just > gonna lie low and lick my wounds. > > Thanks for listening, > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judy: You are also in my prayers......something good has to happen soon with all of us pulling for you. I think you need to get another opinion.........there will be someone out there to help you........Keep the faith and God Bless you Pat in So Ore. --- JANE <janeatregis@...> wrote: > > > Judi- > I will also be praying for direction in finding the > right doctor and > the right treatment for you. I know you must feel > like that doctor > just pulled the rug out from under you. That must > mean that God has > somebody better prepared to help you, right? Hang in > there. I am new > to the board, but have read many of your posts. They > show what a > positive, caring person you are, and you have > blessed and encouraged > through your example. > God bless > Jane > > > > > > > > > Hello all, > > > > Well I saw the rheumy yesterday, but she > completely refused to > treat > > me. for those of you who don't know, I have > Dercum's Disease, a > rare > > disease. Recently a member of my DD support group > started > > Remicade/MTX because she also has RA and AS. But > she and her doctor > > found that the Remicade was also shrinking the > Dercum's tumors. My > > GP referred me to the rheumy for possible > treatment, and she > refused > > because the treatment would be " off label. " She > said as soon as > > there is some research (not likely) or approval by > the manufacturer > > (also not likely) she would think about it. > > > > Needless to say, I was not happy. Well, actually, > I had a major > > meltdown when we got to the car. Imagine knowing > there is a drug > > that will relieve or remove your symptoms, and > being told you can't > > have it! I won't quit fighting, or searching, but > today I'm just > > gonna lie low and lick my wounds. > > > > Thanks for listening, > > Judi > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Judi, Does your Rheumy prescribe Remicade? Some RA doctors won't even prescribe it. You might check other RA doctors in the area and see if they do or get ahold of the company that makes remicade and see if they would be interested in doing a trial to see if RA helps with Dercum's Disease. Tell them that you would be interested in being a test patient. Give them the information about the other lady who was helped and see what they have to say. When a window shuts another door will open but we have to look for them. It might take a little more time then you wanted to spend getting permission to take Remicade but don't give up. I will be thinking and praying for an answer for you. God bless, Althea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 I would write them a short letter saying you are resubbmitting it for a reversal and you are also sending it to: a,b,c and give them a list of every state and national representative and senator for your area. Also send it to the State inurance Commission, here is a link to them it is from another website trying to fight insurance coverage. http://www.cleftadvocate.org/InsuranceCommission.html Heck I'd even send it here http://www.hhs.gov/ocr/index.html Just make sure you list all of the places you have sent it. -- In Plagiocephaly , " Rita " <ptrita@...> wrote: > > After spending a month writing a 9 page long appeal to United Health > Care, we got our decision back from " an unbiased outside source " . They > denied our claim, saying that we have an exclusion in our insurance. > The clause says that they will not pay for orthotic devices used to > reshape body parts. I was so sure after writing this, presenting all of > the research, sending the measurements and all of that evidence...I am > just upset, p-d off and don't know what to do next. They said they had > a pediatrician who is on staff at four local hospitals, and is on the > pediatric board...and so on and so on...review and deny our claim. > What jerk would be so cruel? I am sure glad he isn't our > pediatrician. If it were his child, he wouldn't be so cruel. > Please help! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 I understand your frustration. Did you say your policy has a specific exclusion? If so, I honestly don't think they will pay because it goes against your specific policy. What was the basis for denial? > > > > > > After spending a month writing a 9 page long appeal to United > Health > > > Care, we got our decision back from " an unbiased outside > source " . > > They > > > denied our claim, saying that we have an exclusion in our > insurance. > > > The clause says that they will not pay for orthotic devices used > to > > > reshape body parts. I was so sure after writing this, presenting > all > > of > > > the research, sending the measurements and all of that > evidence...I > > am > > > just upset, p-d off and don't know what to do next. They said > they > > had > > > a pediatrician who is on staff at four local hospitals, and is on > the > > > pediatric board...and so on and so on...review and deny our > claim. > > > What jerk would be so cruel? I am sure glad he isn't our > > > pediatrician. If it were his child, he wouldn't be so cruel. > > > Please help! > > > > > > Quote Link to comment Share on other sites More sharing options...
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