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Medical Forum / Diseases and Disorders / Arthritis / January 2006remicade comment---- grrr
today john had a colonscopy and we talked to his doc afterward. john has crohns, so the doc was suggesting he start on a particular drug. he's not at the point where he'd recommend remicade yet, because it's so dangerous, the doc said. john could go on it if he wants, but he needs to know he could end up with lymphoma or worse. this doc knows i'm on remicade and he says he understands why i have to be--that i've failed everything else and have serious disease. but honestly, he made it sound like a death sentence. i'm just venting here. blah blah. diane Diane, I'm sorry that it turned out like it did. I'm sure it was upsetting to hear. I wonder if he just didn't think John needed it and said those things to discourage him wanting it. Is John going on the other med he suggested? debbie m. Diane, I suspect that the incidents of lymphoma and some of the other side effects from the biologicals are on the rise. When I think back to my various Doctors who knew I was using Embrel none of them ever mentioned the possibility of lymphoma. Nor did they ever tell me that people with severe RA were at greater risk for lymphoma. I now find more Doctors paying attention to what meds I am taking and how they may effect me. When I was dx'd with lymphoma I never gave a thought to blaming someone or something. I just knew I had to get the best Doctor I could to fight it and put me into remission. I am savoring that remission and going back to handling some of my other RA problems. I can fully understand why this presents such a dilemma. I think a good many Meds present us with compromises that we can either accept or reject when we must decide to use them or leave them alone in order to have any quality of life. I dropped taking doxepine, oxycodone 40mg ER, oxycodone 5mg, lidocaaine patches and heat patches which all can affect breathing, until I find out what us causing my breathing problems at this time. One thing I could not stop or give up was the chemo which may have impacted my breathing. I pray those who must use remicade, embrel. humira and kineret are able to dodge the side effects especially lymphoma. Don Whitely > today john had a colonscopy and we talked to his doc afterward. john > has crohns, so the doc was suggesting he start on a particular drug. [quoted text clipped - 11 lines] > > diane don, do you or your docs believe your lymphoma was caused by enbrel? diane Diane, My Internist who discovered the suspicious spot on my chest x ray, confirmed it on a CT scan and made an immediate referral to my Cancer Doctor never attempted to place a blame on Embrel directly. He said that there was a possibility of it's involvement, but also pointed out that those with serious severe RA have a 32% chance of getting lymphoma. My Cancer Doctor made no attempt to place blame on anything or anybody for the lymphoma. His concern was that it had been there for a while and without immediate treatment, I had an estimated life span of maybe several months. I personally have never dwelled on wondering what caused it. I don't blame my doctor's for not finding it sooner. The doctor who discovered it, a very sharp inquisitive 2nd year Resident who is now doing a fellowship in Nephrology, was running many many tests based on my description of my back pains, breathing, constant night sweats and alternating periods of hot flashes and then periods of extreme cold. I just know that I was very fortunate that mine was discovered in time and that I have a Cancer Doctor who has succeeded in placing it in remission at the moment. I am very aware it can return at any time and it can return in another place which could complicate replicating my current remission. My Cancer Doctor has made certain that I understand he can not cure me, but can probably keep me in remission. I never meant to infer that all those people on biologicals should not be on them, we all need these things in order to have some quality to our lives. My current Rheumatoligist has not suggested that I return to using Embrel or Methotrexate. My Cancer Doctor said I must discontinue Embrel and Methotrexate. I guess maybe I think Doctors should be screening for lymphoma for their patients on biologicals and those with very serious immune disorders.. It's a crap shoot no matter how you look at it. Don whitely > don, do you or your docs believe your lymphoma was caused by enbrel? > > diane <<I guess maybe I think Doctors should be screening for lymphoma for their patients on biologicals and those with very serious immune disorders.. makes sense, don. as always, i admire your attitude toward your illness. diane Diane, My Mother and Grandmother both died of Cancer. My Grandmother, breast cancer and my Mother, colon cancer. At least I have dodged those bullets so far. My oldest Daughter's husband had breast cancer and is a current survivor. Don Whitely > <<I guess maybe I think Doctors should be screening for lymphoma for > their [quoted text clipped - 4 lines] > > diane >he's not at the point where he'd recommend remicade yet, because it's >so dangerous, the doc said. john could go on it if he wants, but he >needs to know he could end up with lymphoma or worse. Those non Rheumie docs sometimes don't have a clue about these drugs. A friend has terrible Psoriasis and his dermatologist is terrified of Enbrel...same kind of comments. Sheez we have higher rates of Lymphoma, and those on Remicade often have a severe form of RA, PA etc so why wouldn't the incidence of Lymphoma be increased. IT doesn't mean there is an absolute cause and effect relationship between remicade and Lymphoma. Vent on! -- MZ Visit my website: http://www.mzuschlag.com >> he's not at the point where he'd recommend remicade yet, because it's >> so dangerous, the doc said. john could go on it if he wants, but he [quoted text clipped - 7 lines] > mean there is an absolute cause and effect relationship between > remicade and Lymphoma. Vent on! -- MZ my thoughts exactly. These docs who don't have loads of patients on the biologics, just aren't as immersed in the details. On the other hand, there are many derms out there prescribing Enbrel without a qualm for folks with severe psoriasis and they've found that controlling P once it's in remission generally doesn't require as much Enbrel as controlling arthritis. (Your friend does belong to the NPF doesn't he? They can provide lots of info for him to pass on to his derm. I LOVE the NPF. With all my frustrations with the Arthritis Foundation, I'm thinking seriously that the NPF may this year get my usual donations to *both* foundations.)  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare This was what Wyeth said when they lauched enbrel in Japan - Article Date: 29 Mar 2005 In medical studies of all TNF-inhibitors, a higher rate of lymphoma (a type of cancer) was seen compared to the general population, however, the risk of lymphoma may be up to several fold higher in RA patients. The role of TNF-inhibitors in the development of lymphoma is unknown. The incidence of other cancers has not increased with extended exposure to ENBREL and is similar to the expected rate. Web site http://www.medicalnewstoday.com/medicalnews.php?newsid=21939 Peter PS There is also a lawyers web site which cites a possible greater incidence of lymphoma connected with those taking anti tnf drugs http://www.yourlawyer.com/topics/overview/remicade/ Peter yikes! what a dutz! that's a real aware and compassionate doctor---NOT! grrrrrr . . . kate today john had a colonscopy and we talked to his doc afterward. john has crohns, so the doc was suggesting he start on a particular drug. he's not at the point where he'd recommend remicade yet, because it's so dangerous, the doc said. john could go on it if he wants, but he needs to know he could end up with lymphoma or worse. this doc knows i'm on remicade and he says he understands why i have to be--that i've failed everything else and have serious disease. but honestly, he made it sound like a death sentence. i'm just venting here. blah blah. diane >yikes! what a dutz! that's a real aware and compassionate doctor---NOT! >grrrrrr . . . [quoted text clipped - 10 lines] >be--that i've failed everything else and have serious disease. but >honestly, he made it sound like a death sentence. Do a google search. I'm off to work so I don't have time to find it but I read an article a couple of days ago that said remicade or other TNF inhibitors does not increase the risk of lymphoma outside normal limits. RA on it's own is what increases the chances. Thumper > i'm just venting here. > >blah blah. > >diane Diane, Praying that John is doing some better by now and that he can make some decisions on his care plan. I have a friend here at our church that also suffers quite severely with Chrons and he actually has done quite well on Remicade. He had to have some surgery a year or so ago to remove part of his intestinal tract, but he is doing quite well now and between a low dose of pred and the remicade, he seems to be doing well. Best wishes to both you and John!!! Donna G thanks, donna. he'll be going on a drug called 6MP, which sounds a bit like mtx to me. he's been on it before (years ago) and hated it, but like us, he doesn't have much choice. how are you doing?? diane thanks, donna. he'll be going on a drug called 6MP, which sounds a bit like mtx to me. he's been on it before (years ago) and hated it, but like us, he doesn't have much choice. how are you doing?? diane Diane, I hope things go well for John. Thinking of the both of you alot. Wishing you both well. SignatureHugs, prayers, good thoughts, Warm fuzzies, TLC, and Love Squirrely Jo > today john had a colonscopy and we talked to his doc afterward. john > has crohns, so the doc was suggesting he start on a particular drug. [quoted text clipped - 11 lines] > > diane |
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