Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 Getting a bit more nervous as it gets closer. Seems more people had very bad experiences with the Remicade then the benefits. Am I wrong? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 I've done a large number of posts on my experience with Remicade. I have been on it for the last 5 or 6 yrs. For me, it was a godsend. Immediately after my first infusiion-- I was able to open my hands-- my thumbs had developed contractures that had the thumb folded upon the palm of my hand. The pain in my joints and muscles and bones went away that first day. I did have to increase the frequency of the infusions to where I was getting them every 28 days, and I was at a maximum dose of 10mg/kg. It was only 7 wks ago that I had my last infusion-- and after 5+ yrs-- I had a problem with cellulitis and lymphedema occur. To me, it said it was time to stop - and find an alternative. I think one of the biggest reasons that I had the problem with the cellulitis is that I have always had them do the infusion in the same arm, I'm so right hand dominant that to have that arm not available during the massage would be too much- I figure that the only reason I even have a left arm is for symetry-- because it sure doesn't do anything else-- LOL. I can honestly say that my quality of life became better with the Remicade-- and I'm glad I made that choice--even with going thru another (positive) change now. Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Thu, June 3, 2010 2:02:05 PMSubject: NERVOUS Getting a bit more nervous as it gets closer. Seems more people had very bad experiences with the Remicade then the benefits. Am I wrong? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 I can't tell you statistically, but it seems that of the people on this list who have tried Remicade, that more have done okay (as far as side effects/complications) than have had poor reactions. Tracie & Marla can probably verify this, but I'm thinking that they start with a small dose to determine your response, then gradually increase it to a therapeutic level. As with any drug, each person must weigh the possible risks against the potential benefit. No one can know for sure if they will have reactions or side effects, just as they can't know if it will provide great relief from symptoms & improve quality of life. As I remember it, Tracie was at the point of needing a heart-lung transplant, which she wasn't a very good candidate for, so trying the Remicade was a pretty easy choice (feel free to correct me if I'm wrong, Tracie--like you would hesitate to do so!) For someone who is not in such dire straits, it might be a more difficult decision. One of the important factors is that your doctors are totally informed about proper protocol in using Remicade. You must keep or start taking an immune suppressant, such as Methotrexate or Plaquenil; otherwise you can form antibodies against the Remicade, which can cause illness & make the Remicade ineffective. Good luck with your treatment plan. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mjcv29a@...Date: Thu, 3 Jun 2010 17:02:05 -0400Subject: NERVOUS Getting a bit more nervous as it gets closer. Seems more people had very bad experiences with the Remicade then the benefits. Am I wrong? The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 I'm sorry I'm behind in posting, I have been sick for a few days, lower GI fun stuff:) I just wanted to let you know that I have been very lucky with Remicade, and when I go in for my infusion there are about 3 others there most of the time they're on Remicade too. The thing I hear the most is that they didn't notice any change for the first 3 infusions then felt better, or it did not help at all, but have not heard any bad stories, and the Nurse that does the infusions says she has only seen a couple mild reactions, and only once even stopped the Remicade, but again not a really bad reaction. I notice a change after the first infusion, have been on it now over a year and have gained a lot back, I am now at the point where there is no change, but sure know when I need the infusion, and do feel the positive effects. So I am one to say give it a chance, I was at a point where I was begging for it, in fact, we fought the insurance company for about a year for the drug, and finally with the help of Tracie got approval, and I am soooo glad I did. For me it's a win win situation. Good luck, and if I already posted something like this, I'm sorry I tend to repeat, as the memory is not so good. Blessings, Marla Getting a bit more nervous as it gets closer. Seems more people had very bad experiences with the Remicade then the benefits. Am I wrong? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Tracie, After reading your post, I decided to have them start alternating my arms,thanks for sharing that with all of us. Marla I've done a large number of posts on my experience with Remicade. I have been on it for the last 5 or 6 yrs. For me, it was a godsend. Immediately after my first infusiion-- I was able to open my hands-- my thumbs had developed contractures that had the thumb folded upon the palm of my hand. The pain in my joints and muscles and bones went away that first day. I did have to increase the frequency of the infusions to where I was getting them every 28 days, and I was at a maximum dose of 10mg/kg. It was only 7 wks ago that I had my last infusion-- and after 5+ yrs-- I had a problem with cellulitis and lymphedema occur. To me, it said it was time to stop - and find an alternative. I think one of the biggest reasons that I had the problem with the cellulitis is that I have always had them do the infusion in the same arm, I'm so right hand dominant that to have that arm not available during the massage would be too much- I figure that the only reason I even have a left arm is for symetry-- because it sure doesn't do anything else-- LOL. I can honestly say that my quality of life became better with the Remicade-- and I'm glad I made that choice--even with going thru another (positive) change now. Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Thu, June 3, 2010 2:02:05 PMSubject: NERVOUS Getting a bit more nervous as it gets closer. Seems more people had very bad experiences with the Remicade then the benefits. Am I wrong? Quote Link to comment Share on other sites More sharing options...
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