Well finally I had my first infusion on wednesday:)
What an amazing medication I felt some relief by the end of it I dont know if your first infusion is just not enough because I'm finding some pain that had disapeared are coming back. Im very optmistic though and looking forward to the miracle of my next appointment on the 30th.
Also has anyone on remicade got sick right after treatment? I ofcourse was really tired but then got a puky feeling that wont go away and started throwing up last night(thursday) woke up this morning and its still there. Should I be concerned? I feel like I have the flu ughhh

Nat - you can search the internet for 'Remicade - side effects' lots of information. But, does not mean that you will encounter all of em! Perhaps this is just due to initial dosing? And the effect will pass.

Hope you feel better soon -

hi hope the remicade is working for u. i was on remicade and had the same flu like symtoms but it only lasted two days. i think its your body getting use to the medicane. hopefully the next time you get your injection it will be less feeling sick. good luck gina

Well today it doesnt seem to be working on my upper back and neck but much relief in si joints. I have read much on remicade but they put everything down and its nice to hear from real people instead of freaking yourself out reading stuff online.

Are they putting in a steroid first? I have a steroid put in before the Remicade and have had no side effects. Tell your Dr. what happened.

nope no steroids, just the saline bag and remicade. i will for sure be bringing it up. it's been almost 3 days and i still feel really crappy

I had 6 infusions of Remicade, increasing doses till it was certain that it wasn't going to work.

First 3 doses were not problems, maybe a bit of sniffly nose, but nothing noticeable to me. 4th (or 5th) dose went up by one vial and the next day I felt like I had a sinus infection (a familiar feeling), so I zipped off to my PCP and started some antibiotics. In a couple of days I was better. Then 6th and final dose went up by 2 vials to 6 vials. By this time, I'd learned that it was not a true sinus infection, but a side-effect of the Remicade. I really felt like I had the flu for 2 days. Went to work because I knew it was a side-effect, not illness, but I felt bad. I never got pre-meds, but was told to take Claritin or Zyrtec for 2 days prior to the infusion. I took it for the whole time I was taking Remicade. It was the only part that worked!

Good luck with the Remicade!

Argh...So sorry you're having bad side effects.

I've decided against the Remicade or Enbrel. Both have the def side effect of lowering your immune system. I work in a drug treatment facility & cooties are hopping all over the place! I don't need to open myself up to more issues. I also remember I had some neighbors that went from healthy, highly active, functioning adults, to recluses with the flu after they were diagnosed with Hep C & started Interfuron (sp?) treatments. The "possible" side effects of Remicade & Enbrel are tremendous as well! Still experimenting with meds...but they won't be on the list.

I hope the side effects level out for you & give you relief!

Lessimore : check out LDN, Low Dose Naltrexone, on the 'Alternatives' forum. Lots of info and several KA'ers are on LDN with efficacy. LDN plus LSD (low starch diet) you might find that you have a good response to this regime.

LDN + LSD has been my life saver.