Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Thanks Matt nice to hear I am not alone. Brie.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 I think we can see that not everything works the same for everyone. So it remains a matter of trial and error. Hopefully the errors don't land many of us in the hospital. The error is just in guessing what might work now. These drugs are new enough that there is not good statistical data on what side effects and what positive effects are and how long they last after an infusion. When I had a headache with first infusion of Remicade, they slowed it down LOTS on the following infusions, and that helped. But I had headaches that lasted for months afterwards. That also says how long the drug and effects hang around. Some of my B cells are not back to pre drug levels after four months. I felt I had minimal response but how do we measure how far down we might have gone or will go? Being on crutches for almost a month has really made me rethink how tomorrow may look at any time. Also, new question: How much does weather affect your active disease? Most of us probably also have some osteoarthritis that sings when the weather changes, but do people get actual flares with the weather changes? I just went from Il/St.Louis are to California, with minimal change and came back from 70 and sunny to snow and ice with minimal change... How concrete and OBJECTIVE can we be about weather responses? Glad to hear I am not the only slacker just reading, not writing. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 How long they work is also another problem. When I first went on Enbrel it lasted a full week, but not anymore. I tried Humira and that made the whole situation even worse so I went back to Enbrel. The thing I really hate about all of it is that if and when you get sick with anything much the first thing with the Enbrel is that you have to go off it until you are finished with the antibiotics and then another 2 weeks or so after that. The OA is another wonderful factor in life. If you manage to get the RA partially under control there seems to be a part of your body that seems to say " Okay I think it is time for some more pain somewhere new " or my body seems to anyway. LOL. Right now I am waiting for knee replacement surgery which they are blaming on a fall and OA. It is being put off due to a sinus infection that decided that it needed to spread through out my body and affect parts that shouldn't be involved at all. I am tired of all of it but I refuse to give up. I have learned to deal with it and to find new ways to do things that I love and to do without the things I shouldn't have been doing anyway. I don't miss drinking as much as I could or dancing for hours, but I refuse to give up my knitting needles or crochet hook so I have learned to live with it. I have to remember what my sister told me soon before she lost her battle with cancer: " If something is really important in your life, you can and will find a way to continue to accomplish it. If you can't then it must not have been as important as you thought is was. " --- In Rheumatoid Arthritis , " hlflatau " <hlflatau@...> wrote: > > I think we can see that not everything works the same for everyone. > So it remains a matter of trial and error. Hopefully the errors don't > land many of us in the hospital. The error is just in guessing what > might work now. These drugs are new enough that there is not good > statistical data on what side effects and what positive effects are > and how long they last after an infusion. > When I had a headache with first infusion of Remicade, they slowed it > down LOTS on the following infusions, and that helped. But I had > headaches that lasted for months afterwards. That also says how long > the drug and effects hang around. Some of my B cells are not back to > pre drug levels after four months. > I felt I had minimal response but how do we measure how far down we > might have gone or will go? Being on crutches for almost a month has > really made me rethink how tomorrow may look at any time. > Also, new question: How much does weather affect your active disease? > Most of us probably also have some osteoarthritis that sings when the > weather changes, but do people get actual flares with the weather > changes? I just went from Il/St.Louis are to California, with minimal > change and came back from 70 and sunny to snow and ice with minimal > change... How concrete and OBJECTIVE can we be about weather responses? > Glad to hear I am not the only slacker just reading, not writing. > Helen > Quote Link to comment Share on other sites More sharing options...
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