Hi all, well this is different. This morn. I talked to the nurse and she said, 'we don't think the remi/mtx is working for you, I'll call you back. Then I get a call from the remi nurse, to come in Monday for my infusion????Does this make sense? So, i said, "I was told it wasn't working!" I want to talk to the other nurse....Then the other nurse says, the doc "wants me to carry on and take it". HUH? This does not impress me as sound thinking! I don't see the doc, until June 4th (after this monday's Remi infusion) WHO IS IN CHARGE HERE? The inmates? Another 0 out of my pocket! lv, sarahDoes sound different. It is still awfully early to write off the Remicade.
But...I totally understand the whole out-of-pocket issue. Does your dr.
ever return phone calls? I found that to be the most helpful--skip the
whole nurse as messenger problem.Good idea, I'll give it a try, lv sarah
Hi Sarah,
Even though I am changing off infliximab (remicade) to etanercept soon I am still going for my next planned infusion (next week) before I go in to see the Consultant for the final agreement for the etanercept. I think they want to keep up the infliximab because it does have some effect - even though it's not great and not very successful - they slo don't want to leave me with no treatment whatsoever while they do all the tests etc for starting the etanercept - maybe your Dr is hoping it will start working - you've not had many infusions yet really? Or maybe they want to keep you going while they figure out what to do with you next (I mean that in the nicest possible way- LOL).
I sympathise on the frustrations of getting hold f the Dr between appointments GRRRRRR.
KT
How long have you been on the remicade? I have heard it can take awhile to work just like these other biologics. You posted before that you pay 20% out of pocket for infusions? Humira is 00.00 for 2 injections if you do not have insurance. That works out to a month of humira if you are taking it every other week. So, you would be paying more money in the long run for the humira. Try to stick with the remicade anyways and give it a chance to work. In fact, insist upon it.