Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Marla, I still have weeks where I feel wonderful-- comparatively. I started hitting a plateua and the lower doses had to be increased to keep me at my higher level of functioning--so we increased the dose and decreased the interval between infusions so that I get as long a "good" period as possible. I am now at maximum dose and shortest interval that they will use, but at least it still gets me through a good 3/4 weeks each month where I'm relatively comfortable. What I have found is that I'm not showing any more improvements, but I know that it will take care of the bone and arthritic pain, along with my breathing becoming much better during the 3 weeks following the infusion. The fourth week is tough, as my lymphs go nuts, my breathing starts to really suck, and my brain goes back to fog. Today was infusion day, and right now I feel like my mind is not connected to my body, but already the pain in my spine is gone. I don't feel at all short of breath, so that too is literally hours after the infusion-- 6 to be exact. What I am experiencing and am worried about is that I've started to develop the leg and muscle weakness-- and one of the suspected side effects of high dose long term is a possiblity of developing MS. They don't know if it is the Remicade, or if that is another predisposition. I suspect it is the later, as I have a cousin that is 10yrs younger than me, and she has recently developed MS. We both grew up in this area, and she is square in the middle of Yolo County-- Woodland-- where the tomatoes and produce and all the crops are heavily fertilized and the pesticide usage was huge. Her dad worked for Tractor, and she was out there in the fields with him whenever she could get away with it. Since so much of that has always been done with airplanes-- you couldn't get away from the heavy dose of pesticides. I'm also worried about the 2 episodes I've had now with chest pain and what seems like pericarditis--- I'm in the process of sending my tests to Dr. Sharma for review-- they are downloading as we speak. I may be taking a trip to LA soon-- we'll see. I don't know what the next chapter is going to be-- I've gotten out of my league now-- and am too tired to do the research to figure this out-- so yeah, it's depressing. Like you I've had wonderful results, and don't want to give any of the progress up. I sure as hell don't want to go back to the pain and weakness that I had prior to the Remicade. So, I'm spooked. I've held off sharing this-- because I really do believe in the treatment, and honestly would go through this again to have had the quality of life improvement that I've been experiencing for the last several years due to the Remicade. As far as feeling better-- I'm on that initial "high" and will be crashing tomorrow and through the weekend-- so we'll just go minute by minute. Hugs, Tracie NS Co-owner/moderator Tracie Hey Tracie, did you get to the doctor, how are you feeling? I hope the chest pain is better. I have a question, after starting the Remicade when do you know that this is as good as it gets? know what I mean, I am doing really, really well on it.still have a bad day now and then, I feel so much better I know some days I over do it, and then it catches up to me. but I was wondering, do you continue to feel better even on the maintenance doses, or does that just hold you where you are? I hope you being back here means you are feeling better?? love ya, Marla-- 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
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