Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Thank you in advance for sharing and also for all that you have shared alread Doug. We live in CT and I just wrote Dr. Trentham that I will suggest Enbrel to Dr. Janine who treats Brett here at Yale. I told Dr. T. that Brett will probably see in sometime in the future for a consultation. Good luck on your visit !!!! B. in CT At 12:07 PM 3/17/2000 -0800, you wrote: > > >I've spent many hours on the phone with deans of the UCLA Medical School and >USC Medical School inquiring about RP (I am lucky to have good contacts with >those medical schools). In any event, both deans had their immunology / >rheumatology department heads call me about RP, treatments, tests, and >appropriate consultation. > >I was pleased to know that near all fingers point to Dr Trentham as the >resident expert in managing the disease. I am, therefore, traveling from LA >to Boston next week for a consultation. > >I discussed Enbrel with Dr. Ehresmann of USC and he described it as a very >promising treatment to halt the inflammation process. In our brief >discussion, and with my VERY limited knowledge at this point, I understood >the treatment to be one that manages how inflammation occurs in the body. >It seems that TNF is the " regulator " of the inflammatory response. The more >TNF the body produces, the more significant the inflammation reaction. It >appears that Enbrel is a pure genetic human protein that acts as a receptor >to TNF. Thus, as a receptor, it " collects " TNF from the bloodstream so that >it can be expelled from the body instead of participating in an inflammatory >reaction. I understand it is a costly treatment -- don't know how much. It >typically involves the injection of the protein two times a week. > >As I state above, I know near nothing at all about this, but it does seem to >be a promising intervention for certain people. When I learn more, I'll >share the information with the group. For now, I'm looking forward to >seeing Dr Trentham and getting a medical management team and approach put >together. > >Have others used Enbrel? If so, please comment on your experience. > >-Doug > >Date: Fri, 17 Mar 2000 13:32:33 EST > >To: susan.burdick@... ( E Burdick) >Subject: Re: Relapsing Polychondritis >Organization: Beth Israel Deaconess Medical Center, Boston > >Text of message from susan.burdick@..., 17 Mar 2000, 10:43 AM >Dear Dr. Trentham, >Thank you very much for your quick response. Brett also has constitional >neutopenia and has a very low white blood cell count so she is wary about >putting him on other drugs that are commonly used for RP, but I will ask >her again about other drugs. The dose of prednisone does not stop him >from get numerous flares. I gave her a copy of your article on his fir... > > >Enbrel might be fea better for him but I can't go further unless I saw him >.DT > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/936/1/_/32049/_/953322539/ >------------------------------------------------------------------------ > >hi and welcome. maybe we can come up with answers that our doctors can't > >------------------------------------------------------------------------ >MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click./1/2122/1/_/32049/_/953323849/ >------------------------------------------------------------------------ > >hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Doug: Donna CA here, I went to UCLA last year and they admitted that they had very limited experience with RP. I have an appointment with Dr. Trentham on the 31st of March, when is your appointment? He is the last hope that I have of finding someone who has experience with this disorder. I hoping that he will consult with my doctor once he has seen me. Donna CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 donna, i do believe that dr. Trentham will glady corresponde with any of his patients " other " dr's in the correct treatment of RP, He truly is the kind of dr. that is strictly for helping patients any way he can. take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Doug, I was diagnosed with RP mid 1998 and they diagnosed it correctly (ears). I went to see Trentham this week and I had told him that I exercise (aerobics, Tybo or whatever class fits my schedule) 3-4 times per week. He seemed surprised but I told him I feel better when I do even if I force myself, especially while I was on prednisone treatments. I don't know if there are any scientific reasonings, but personally, I feel I benefit from the results, if not for fighting the RP, but for peace of mind and knowing I can still exercise while combating the disease. Let me know what Dr. T says about the exercise, I didn't go into detail with him over it. Addtionally, and from your posts I can tell you will be prepared, but the more questions you have for him, the longer he spends with you. If you're flying all the way to Boston, make sure you get your monies worth! On another note about you asked about Enbrel and there are several members of the group who are currently taking this treatment (I asked earlier this week). I also work with a woman who takes it for RA and she just started it but the treatment is about $1000 per month and you have to have pre-approval from Enbrel to be able to get the drug (this is her story). My brother has worked for Amgen for many years and he told me last night they are coming out with a drug similar to Enbrel so when the information is released, I will definitely share this with everyone. Be well and good luck with Dr. T. Just me ... Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Doug, There is another woman who has RP in Valencia that I correspond with. She is not a member of the group. Would it be all right if I gave her your E-mail address and let her know that you have RP Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Doug: Should you and your wife ever get out to the Pismo Beach area I would live to get together. My home number Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Thanks for the kind wishes. Another question to the group... Has anyone approached their long term medical management through diet and exercise as a way to compliment / minimize the medical regimen? Anyone familiar with studies on controlling environmental conditions (diet, exercise, alcohol, tobacco, pollution, etc) and its affect on immune-mediated disease processes? -Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 I've tried most diets, chelation, acupucture, herbs etc. Some of the combos do help somewhat but the disease plows on through. The only dietary thing that had any significant impact on my episodes and the prevention thereof was: Diet Tonic Water. Quinine, no sugar. My RP responds to quinine in its various forms. RE: Enbrel Thanks for the kind wishes. Another question to the group... Has anyone approached their long term medical management through diet and exercise as a way to compliment / minimize the medical regimen? Anyone familiar with studies on controlling environmental conditions (diet, exercise, alcohol, tobacco, pollution, etc) and its affect on immune-mediated disease processes? -Doug ------------------------------------------------------------------------ MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click./1/2122/1/_/32049/_/953325080/ ------------------------------------------------------------------------ hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 I'm going to see Dr. T. on the 24th -- assuming I can get flight arrangements. Seeing as you are in CA (I'm in Valencia - 40 miles North of LA), you might benefit from contacting Dr. Glen Erhesmann, Associate Professor of Clinical Research, Internal Medicine & Rheumatology at USC Medical School. A quick bio is at this web site. http://kerouc.usc.edu/Tango/uscp_basic.qry?function=detail & DetailLayout_uid1 =105 Dr. Erhesmann has worked with Dr. T. on some clinical research from the past, and knows him. I plan to follow my consultation with Dr. T. with additional consult from Dr. E. Just another opinion, and a way to connect locally with a specialist who can work with Dr. T., too. I am hopeful that this will help make up the cornerstone of my medical management team. As for UCLA, there is a Dr. Behalf who is a neurotologst with experience treating autoimmune disorders of the inner ear. In the event that your manifestation is cochlear in nature, he may be another place to turn. let me know if you need contact info. -Doug Re: Enbrel From: okerdo@... Hi Doug: Donna CA here, I went to UCLA last year and they admitted that they had very limited experience with RP. I have an appointment with Dr. Trentham on the 31st of March, when is your appointment? He is the last hope that I have of finding someone who has experience with this disorder. I hoping that he will consult with my doctor once he has seen me. Donna CA ------------------------------------------------------------------------ PERFORM CPR ON YOUR APR! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click./1/2121/1/_/32049/_/953326030/ ------------------------------------------------------------------------ hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Extremely interesting. Does anyone have similar experience with Quinine? Familiar with any studies on its effect on autoimmune processes or inflammation? Maybe I'll have a Gin and Tonic tonight to celebrate St. 's Day, dullen my worries, and possibly put some RP flare-up to sleep Thanks for the input. -Doug I've tried most diets, chelation, acupucture, herbs etc. Some of the combos do help somewhat but the disease plows on through. The only dietary thing that had any significant impact on my episodes and the prevention thereof was: Diet Tonic Water. Quinine, no sugar. My RP responds to quinine in its various forms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Tonic does sound odd doesnt it. Yet the only drink I can have without a flare up is: Rum and Tonic. There is a theory that RP is caused by a Mycoplasma. A creature without a cell wall, so hard to find. Some mycoplasmas respond to quinine based drugs, subject to its resistence. This begs the question: Has anyone out there ever undergone specific tests for Mycoplasmas? RE: Enbrel Extremely interesting. Does anyone have similar experience with Quinine? Familiar with any studies on its effect on autoimmune processes or inflammation? Maybe I'll have a Gin and Tonic tonight to celebrate St. 's Day, dullen my worries, and possibly put some RP flare-up to sleep Thanks for the input. -Doug I've tried most diets, chelation, acupucture, herbs etc. Some of the combos do help somewhat but the disease plows on through. The only dietary thing that had any significant impact on my episodes and the prevention thereof was: Diet Tonic Water. Quinine, no sugar. My RP responds to quinine in its various forms. ------------------------------------------------------------------------ PERFORM CPR ON YOUR APR! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click./1/2121/1/_/32049/_/953328901/ ------------------------------------------------------------------------ hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Kathleen: Great information. I'll be loaded with questions for the good doctor. Is the other drug your brother described called Remicade, or something like that? My quick research (only been at this for a few days since diagnosis) shows that it is similar to Enbrel and is an actual antibody to TNF. Any more details would be interesting to know. Thanks, Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Donna: Please do. Having just been diagnosed, my wife and I could benefit from a face-to-face talk with someone else. -Doug From: okerdo@... Hi Doug, There is another woman who has RP in Valencia that I correspond with. She is not a member of the group. Would it be all right if I gave her your E-mail address and let her know that you have RP Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 I underwent PCR Mycoplasma tests, but mine came out negative. At the time, I had already started the antibiotic, Minocin. This usually renders the mycoplasma tests as negative. It doesn't mean that the mycoplasmas are not there, however. -Connie RE: Enbrel > > > > > Extremely interesting. Does anyone have similar experience with Quinine? > Familiar with any studies on its effect on autoimmune processes or > inflammation? > > Maybe I'll have a Gin and Tonic tonight to celebrate St. 's Day, > dullen my worries, and possibly put some RP flare-up to sleep > > Thanks for the input. > -Doug > > > > I've tried most diets, chelation, acupucture, herbs etc. Some of the combos > do help somewhat but the disease plows on through. The only dietary thing > that had any significant impact on my episodes and the prevention thereof > was: Diet Tonic Water. Quinine, no sugar. My RP responds to quinine in > its various forms. > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/1/_/32049/_/953328901/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/32049/_/953329255/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Doug, you might also ask if we NEED the TNF. It seems I read somewhere that the TNF is needed to fight infections?...sorry for the foggy brain today. If the Enbrel and Remicade are anti-TNF, are we also doing harm as far as being able to fight off other infections, and cancers? Just a thought.... -Connie > > I'll be loaded with questions for the good doctor. > Is the other drug your brother described called Remicade, or something like > that? My quick research (only been at this for a few days since diagnosis) > shows that it is similar to Enbrel and is an actual antibody to TNF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Doug, I am reading a book called Eat Right 4 Your Blood Type. It is by Dr. Peer J.D'Adamo withCathering Whitney. It is really interesting. You would have to know you Blood type of course. My blood type is O. It talks about what type of diet you should have. What diseases type O's are susceptible to. And inflammatory diseases is one of them. It said people with type O blood tend to have over active immune systems and often resulting in the immune system turning on itself. It is a real interesting book. I've seen it at all the book store I've been to and also Health food stores. As soon as i read it, i made a diet change. Believe it or not I feel really good. Ive been in it for about 2 weeks. At this point i am ready to try anysuggestions. I didn't mean to write a book, sorry. I hoped this helped you a little. . RE: Enbrel > > > Thanks for the kind wishes. > > Another question to the group... > > Has anyone approached their long term medical management through diet and > exercise as a way to compliment / minimize the medical regimen? Anyone > familiar with studies on controlling environmental conditions (diet, > exercise, alcohol, tobacco, pollution, etc) and its affect on > immune-mediated disease processes? > > -Doug > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/1/_/32049/_/953325080/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Exceptional info. Look forward to reading the book. -Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Hi Doug, I'll get more info from him and share it with everyone and the release date for use. K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 I'll inquire more about Enbrel and post back when I return. -Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 > I'll inquire more about Enbrel and post back when I return. > > -Doug Doug and all, what is it you want to know about Enbrel? I know a lot about Enbrel, I was on it for a long time (7 months) and I am going back on it in a week. I am no mail so E-mail me at idigflower@... or I read the posts once a week at the site. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 , Thanks for the info on Enbrel, Remicade and minocin. B. At 03:43 PM 3/27/2000 EST, you wrote: >From: Hob@... > >I asked my Rheumy about ENBREL and she told me that she has a number of >patients taking it and so does the CO University Rheumatologist with whom she >consults. But they are using it for non-responding RA patients and have >only just begun to hear of possible application to other Rheumatoid diseases. > There are no clinical trials that she knows of but other Rheumys around the >US are testing it on other diseases. > >She said that its " sister " drug is REMICADE (Remecade?). Both act the same >way and they have both anti-inflammatory and immune suppressant >characteristics. > >She seemed to emphasize that they (meaning the group she is with) prefer to >use it in cases that don't respond to other drugs. > >She spent some time explaining that people who are on high doses of immuno >suppressants for a long time can develop tumors and that the newer drugs like >Remicade and Enbrel have not yet been out there long enough to know if they >will have a " normal " incidence of tumors or an abnormal one -- meaning high >incidence. >The FDA is watching for data about that. > >She also said that with ANY drug the side effects are always associated with >the cumulative dose and that depends on both the amount in each dose and how >many months or years the patient is on the drug. You can be on 5 mg >prednisone for 30 years and have no ill effects. But you might be on 60 mg >for six months and have some bad problems. Good doctors know how to regulate >the meds to reduce the probability of the worst side effects and a good >Rheumy with patients on ENBREL can get them off prednisone but also may look >forward to a time when maybe the patient will be off ENBREL, too, and then >maintained on 5 mg. prednisone. > >Meantime, if any of the list members on ENBREL are willing to tell us the >dose they are taking and what else they are taking, it would be interesting >to my doc. > > H. > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/937/1/_/32049/_/954189823/ >------------------------------------------------------------------------ > >hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
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