Forgive me if this has already been posted, but I am desperate to know of any similar experiences with Remicade.
I had my 2nd dose of remicade last week (still on loading doses, next dose in 3 weeks) and while I am not having a serious reaction at the time of the infusion, I feel sicker then ever following the infusion. My first remicade appointment was a little rough, it started with 8 tries to get an IV started, which finally was started on my inner wrist (OUCH!). The BioClin nurses called my doctor immediately after and said that they were not comfortable starting an IV on me due to my poor veins, so I now have a picc line (double ouch!).
During the first infusion I started to get a headache and a little bit of nausea. My only start-up medication was Solu-Cortef (hydrocortisone). A few hours after getting home I started vomiting, and by the next morning I felt like I had been hit by a bus. Every muscle ached and the nausea/vomiting continued. I continued to have diarrhea up to 20 times a day (normal for me) and felt no relief. I called the doctor with my symptoms and was told to go to ER if I got worse, but that the symptoms were just side effects from the Remicade. 7 days following the infusion I felt somewhat better, but weak and exhausted.
I was extremely nervous to have my second infusion. My doctor added Benadryl as a pre-med, had the infusion slowed in hopes to decrease side-effects. I also have to take tylenol prior to the infusion to help with the headache. The infusion was a little bit better, the benadryl through the picc was uncomfortable and I experienced a lot of anxiety and "fuzziness" from it. I slept through the first 3 hours of the infusion, and did not get a headache this time. I started vomiting again that night and the muscle aches were there again the next morning. It lasted only about 5 days, but I swear it seems to be making me sicker.
I have not eaten anything since the infusion, and have constant nausea. I am taking Zofran, which seems to help but I have no appetite. I am receiving 2 litres of saline a day at home, but I am worried I will have to start TPN if I can't start eating soon. I have talked to my doctor about discontinuing the Remicade, and although I still have diarrhea, I have stopped bleeding, so my doctor thinks that I should continue the treatment for now. I was told some people do not feel better until at least the 6th infusion.
Has anyone had anything similar to this happen following Remicade infusions?? Any help would be much appreciated!!
Dx with Crohn's Disease: September 2010
Dx with Osteoporosis: March 2011 (secondary due to poor absorption from Crohn's)
Remicade infusions, 4 grams Salofalk, 150 mg Imuran
Tecta, Zopiclone, Calicum, Vit D, Iron, Zofran, Vit B12 IM injections
T3's and Ativan -prn
Picc line inserted in April 2011 for home IV, remicade infusion, and blood draws