Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Matt, I realize and understand your concern. As you know, I hesitated, for many years, before going on to the harsher drugs....for much of the same reasons as you are suggesting. These drugs (Remicade/Enbrel) have only been on the market...to the general population...for the last few years. Yet, Remicade (the first of the TNF-a drugs) was tested way before all the others....I believe it was approved by the FDA in 1995. So these type drugs have been tested for at least 8 years. However, you are right, they could have some long term side effects that we won't know about for years to come. In the mean time, the damage from the disease is causing some of us greater distress than others. Knowing that there might be a small chance for this concern, and other risk factors in taking these drugs, I was willing to take the risk. Methotrexate, and several other immune-suppressants, also have a very low risk factor for lymphoma, but have been used for the last 20+ years for arthritis and have given many relief from their disease activity. Time will help us all understand the long term side effects. There are now three TNF-a drugs (and more in the making) that are helping thousands of people deal with their disease. It there was a great increase in the more severe side effects, we would have some indication by now, and other drug companies would not be rushing to get their name brands out. At least, this is my outlook on it. I feel that everyone needs to know about the concerns and it might not yet be a drug that everyone should be on, especially for early (or less severe) disease activity, people who have had cancer or heart disease. I believe that is why they suggest that you try NSAID and other remedies first. I went into this knowing I'd be a guinea pig for myself and others. It is exciting to see so many people who are having success with these drugs. I pray, that it will only continue to be good news. Many insurance companies and Medicare are accepting the drugs. I hope that the cost will greatly decrease so all can afford these type drugs when they are needed. Have meant to tell you to have a great vacation. Should be wonderful this time of year. Bask in the wonderful sun for us all. :-) Best regards, Connie (granny) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Hi Connie, if I was using Enbrel and getting good results from it, I agree, I would be a fool to go off it. But I live in a different world than most people. I don't fight off infections well and I have watched four of my immediate family who share my gene pool die of cancer. So my decision is a personal one. If you have been taking Remicade, Enbrel and Humira with no problem of infections and are aware if you do have a bad infection, you have to go see the Doctor asap, then there is absolutely nothing that works better than the biologics. Obviously many people have been taking Enbrel for some time and have shaken off colds and flu quite easily. There is good news for this population of people, the side-effects of the biologics have been shown to be actually lower than many other drugs. The reason is that the biologics combine two or more naturally occuring protein sequence molecules that are already found in your body. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 I have also read several ppl who said that after going on TNFs they were better about getting rid of infections and not having as many as in the past, so there are lots of things that we don't know about these things yet. A few years ago when Enbrel first had it's first success with RISG illnesses, I was sure that it was my miracle drug. You can't imagine how hard I worked looking for a doc to prescribe it for me--even to writing to a doc in CA and planning to go there from GA if he would treat me. But he and all of the others I talked to about it didn't want to treat me because I had already had lung cancer. At the point I was looking I really didn't care if I had a few good years and then got cancver again cause I was so miserable I could do absolutely nothing anyway. I could barely get to the docs and pharmacy and home again. It was during the time that a few internet sores were delivering groceries for nothing. Though the prices were higher, that's what I did for a while so I didn't ahve to struggle to the 7/11. Every now and then I think about going after the drug again when I am having great difficulty getting what I take right now. For now I really don't have time to pursue it. /MI Quote Link to comment Share on other sites More sharing options...
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