I was able to get in with my rheumatologist with just a couple days notice to ask what to do next since I was still getting worse with Enbrel + MTX + NSAID. We decided to switch to Remicade and I'm really excited about the idea of bringing the pain down a notch, but most of all, making a dent in this fatigue. The fatigue has been so bad lately and I had 1 scary episode where I grabbed my son to keep him safe, turned on the tv, and layed down because I couldn't keep my head up. It hit me so hard that when my husband came home I just looked at him and couldn't even speak. My mind was going but I couldn't speak!
The best part about the appointment is that my husband went for the first time. We didn't directly address his apprehension or other concerns but hearing the rheumatologist talk about my disease and talk about the importance of trying a new medication helped him see that I need support and that this is real. He was able to tell me his feelings too.
Optim Rx was what my insurance required me to use and they never got my meds right. I'm so glad that being on Remicade will allow me to discontinue using that mail order pharmacy. I was told the my insurance covers Remicade so I hope there is no issue there.
Good luck with Remicade! Humira didn't work for me and my doc wanted to give up on Remicade after my 3rd infusion. I had my 4th infusion over a week ago and a dramatic improvement. I know that someone people respond earlier and wanted to share my experience in case it takes you longer also to see a benefit. Keep us posted on your progress.
yes i have found the fatigue to be a major problem for me too. hard to explain that to family and people at work. They can be real assholes when trying to explain it, so i dont even bother. You can come here and vent with people who empathize.. Hope remicade works for you.
I have my second infusion of remicade today. I have noticed that my energy is returning to near normal (!!!), hips and shoulders feel betterment, but fingers and toes have there on/off again affair with pain even though I d not get much inflammation.
So far, after one infusion the noticeable difference Is great. Though I am taking it with methotrexate, fold acid and nortriptyline. Might be the combo that remicade took charge of and got it all working.
So far, I am a very happy camper despite the high cost. Now waiting so see how much they cover as this will be hitting limits of deductable.
I love my remicade. It was the only thing to put a dent in my symptoms. I tried MTX & enbrel & nothing did any good for me. I had to come off it as I need carpal tunnel surgery on both my hands.You can not have a weakened immune system & have surgery. So I haven't had an infusion since Feb of this year. I have got the all clear from my surgeon so my rheumy has put it the order to resume the infusions. I am currently waiting to get my appointment. Can't wait for it, I can barely walk the pain is everywhere & I am swollen all over.
Give the remicade time & I am sure you will soon be calling it your magic juice. My rheumy had to adjust the dosage a couple of times, but once we found the right frequencey & dose it was smooth sailing. Best of luck to you & keep us posted on how you are doing.
We are all so different. MTX and Humeria works for me. It is all about finding the right combo that works for you. Hang in there and find what works best for you! I so don't want to be a part of this group, but I am. You will find some great friends and others who will support you and be with you thru it all. Sorry you have joined our group. But welcome.