Hello all - I am not quite sure if we are to jump right in?
I started Remicade 9-12, had one infusion, and got extremely ill, and was diagnosed with CMV Colitis. None of it went away, and only got worse. And then started Remicade again. Here is my update:
**UPDATE: for No longer a Lurker
Hello! So - I went back to lurking. I continued to feel sicker and sicker and sicker, with each Remicade infusion. It actually started with my end of Dec 13 infusion. I go so so so sick with that one. The doctors wanted me to try Claritin in stead of doing the double dose of IV Bendryl. From the moment the infusion started, I became sick, as the medication was entering my body, I got hives along the trail that made me itch beyond all imagination. I could barely speak. They stopped, gave me Benadryl, waited a half hour, asked me if I wanted to continue, and I said of course - always threatened in my head - a possible flare lurking. What I had was my one and only flare, and as soon as symptoms started I went straight to hospital. There was no lead up, no time for me to dilly dally. No siree-of course we were going to continue. And it had been a battle ever since. My reactions from that day forward were awful and numerous. Gone was "just" the 3 week exhaustion and fatigue. In August, I was so desperate, and frustrated that no one was listening to me, I asked to speak to the Rhematologist, who felt I was a miracle because I made an amazing comeback from osteoporosis, a few weeks earlier. He said as soon as the infusion was done, he would give me the Prometheus Test. With this infusion, came the rib pain, the costochondritis - that hit as I was parking my car. My symptoms this time around did not leave.
I thanked God I was still on Oxy at this point, called my Drs. and they said it would be two weeks for the test results to come back. Through a comedy of errors, I did not get my results until 7 weeks later, a week before my next infusion. The doctor called and said he had never seen this before, but I had 100% antibody against the double does of Remicade I got. (He is only in his late 30's - so maybe other doctors have seen this. HA!!) He said obviously, I am in remission, and at this point, he was going to email my other doctors and recommend, I take a 3 - 6 mos break of all drugs. He felt my body was way to stressed.
Once again, I go back to - was this all just C-diff? I had c-diff for 10 mos. After my 5th blood transfusion, the doctors in "one day" started me on a course of Vancomycin, 6MP, double dose of Remicade and I was still on 60mg of Pred. After vomiting for 4 weeks and loosing my gall bladder and my appendix, and breaking bones from the violence of the vomiting, (my bones were like swiss cheese then) I was taken off of 6MP. Took three mos to wean me off of Prednisone. Three days after the start of this protocol, I went into remission. Two days off of a ten day course of Vanco, it started back. This put me on a 10 mo course of Vancomycin. After a long wean, I was off Vanco, and fine. It was around this time that the symptoms of Remicade became almost unbearable.
I have no idea of what to make of all of this. I am now, 5 weeks past my date of when my last infusion was to take place. The bone pain continued (not to be confused with joint pain, it has always been bone pain for me. The pain radiated from inside the bone) and the symptoms became much worse, and my brain fog was off the charts. it has been almost 2 days now, that I am starting to significantly feel better. I feel light, and different kind of fatigue, and weak, but more normal that I have in over two years.
I am at a loss. I have started Diatomaceous Earth, and Nux Vomica 6C as detox's. My bowels were never this great on Remicade, lol. My doctor called me last night and wants me to get a Calprotectin Test. He said, we were too afraid to stop the Remicade - I had been begging for months as - as soon as the infusion started I felt toxic, the taste in my mouth was unbelievable - my body did it for us. He said if this text comes back okay, I am free to go med free, and we will see what happens.
It has always been my thought that I had C-diff Colitis. And nothing more. I do have the IBD gene. My brain is so tired. So is my body.
BTW- my diagnosis, has been all over the place. As of my last colposcopy 8/14 I now have been told, it is UC, not Crohn's colitis. Also - in all the time I have been sick, I have not been sick with anything else. During this two year period, two of my daughter's - late in the game, lol, came down with Epstein Barr. I tested negative.
Blessings to all of you. I think Remicade is amazing.
Thoughts?