Well the dr and I agreed today that Enbrel just is not helping anymore, so she's switching me to Remicade.
Does anyone have any advice? I understand that the infusions take about 3 hours. Any immediate side effects afterwards I need to worry about?
There are quite a few side effects and in rare instances some very serious side effects.
I personally haven't experienced any side effects except for some itching post infusion. Even that has only been 3-4 times.
I went into the infusions with badly swollen ankles, sore feet, swollen/sausage fingers and wrists, all of my joints were involved including my back. Now I have no inflammation, no swelling, and the only pain is from damage and OA.
Don't start this med without knowing everything there is to know. That's why I suggest you google and read for yourself. Are you taking MXT? Good luck and keep us posted on your progress. Lindy
It is time consuming but I've had no problems with it since I've been on it (20 months).Hi, I've been on it several months with an increase by 3 X the amount I started with. 00 cost to medicare! Wow, and I pay 0 and Blue Cross 0....what a shock that was.
I haven't had any bad effects (except the sickening feeling about the cost), and it does seem to be working for me. My fingers are still 'a bit stiff', and swollen so I can't wear my rings, but my feet have gotten better and all of my other joints are better.
I'm going for my infusion (900 cc's) on Monday. Good luck, take a book, CD player (I listen to country music!!), food, some water, you can usually sleep through some of it. We have lounge chairs that tip your feet up, blankets, magazines, etc. One woman was good at the I-V and it went smoothly, one was very bad and wanted to put it in my hand! It hurt like .....NO!, I said, in my arm. That finally worked okay. You can tell them where your best vein is.
With everything that's been done for me in the last 4 months, since a terrible flare, I'm doing well, but not out of the woods yet! Lynda
Hi,
I've been on it for almost a year, sadly it's not working too well so I'm looking at switching but please don't let that put you off - it worked at first for me! Are you on MTX? If not you will probably need to have a steroid shot befoe they give you the infusion because remicade can cause an allergic reaction. MTX is good as it keeps you immune system just enough at bay to allow the remicade to work. The most common side effect is an allergic reaction - a headache, flush or itching during the infusion. The medical staff will be looking for this... In the Uk you have your first few infusions over 2 hours (very slow) then you have to stay there for 2 hours after to check for signs of reaction. After a few infusions you go to 1hr infusion, stay for 1 hr after than eventually half hr infusion, stay for half an hour after about 10 infusions. Make sure you take something to read or whatever as it can be very dull sitting watching the drip go in... ALso as sarah said food and water. Wear something comfy and make sure your arms are accessible for the drip and also for them to take your BP as they do this lots...
Good Luck!
KT
Hey all - thanks for the responses. I am on Methotrexate now - 10mgs but she will be increasing that. She did say that there is always the chance that the Remicade will not work, but it does not hurt to try.
I will keep you posted on my progress.
MY total time at the Dr takes about 3 hours, but that includes taking my vitals and weight, getting the infusion and meeting with the Dr or NP for a quick exam and discussion of how things are going.
During the actual infusion I watch tv, read, nap or gab with the other patients and the infusion nurse. We even get snacks and beverages..
I have NEVER had any kind of negative reaction to the infusion.
I am on 20 mg of MTX as well, and have discovered that reducing it by any amount drastically affects how the remicade works.
Good luck Matthew, our lives seem to be one constant juggle with meds!!!!! kind regards Janie.
Hi Matthew,
I just finished my 3rd dose of Remicade and I've had to allergic reactions at all. When I first get to the dr.'s office they give me benedryl and ibuprofen or tylenol (I can't remember which) The nurse takes my vitals and keeps checking them every 15 minutes throughout the whole procedure. I've had 3 different nurses and each one has started the IV differently. The last one was very good and she told me why she doesn't put it in the arm. She says you build up scar tissue around the injection site and you have to keep going lower on the arm (over a period of time) so she prefers to start in the hand, and move upwards as the months go by. It made sense to me. She was very gentle and fast and I only felt a slight pinch and no bruising afterwards. The other two nurses left huge bruises where the IV went in. Looked like I'd had a beating.
Good Luck, Matthew. I hope you have success!
Good luck as you begin Remicade Matthew! I am currently on Remicade, but will soon be switching to something else, as I developed ear ringing (tinnitis) with it. But don't let that discourage you, as I haven't heard of anyone else with this side effect, nor has my rheumatologist. It's not even listed as one of the side effects, so go figure.
Your first infusion will probably be closer to 4 hours, as they start out slow the first time. Subsequent infusions will take anywhere from 2 1/2-3 hours. It's a very relaxing time, and I usually nap through most of it.
I get my first infusion on Tuesday morning! Then I go two weeks later, then 4 weeks, then 8. I'll keep you posted! I am hoping for positive results!I just found out today that I will be switching from Enbrel to Remicade. I can not take MTX so I am curious if it will work as well without MTX as with it. Maybe that is why the Enbrel didn't work too well for me. I'd like to hear from anyone else that takes Remicade without MTX. I do take Prednisone daily.
Mathew please post after your infusion Tuesday. I want to know what to expect. I have been on Remicade and MTX for 6 years and it has worked very well until a few months ago. I'm going to have to switch to something else, but the Doc said I may be able to switch back in the future. The only side effect I ever had was a flare up immediately (the next 3 - 4 days) after the infusion. After that I got a steroid right before the infusion and it never happened again. The time will get shorter as you go along, but still takes quite a while. Take a good book! I always take one I'm not going to finish before the time is up. It is a chance for me to read and not feel guilty about not getting something else done. Best wishes with your treatments.
I was on Remi for about 5.5 years - it worked way better than enbrel for me. Some of the time I was on MTX with it, some of the time no 2nd dmard, and the last couple of yrs I was on arava with it.
I got the remicade 24 hour headache if I didn't take bendryal with it.
Good Luck - I hope you get to be a 'remicade poster kid' miracles still happen.
Brenna I take remicade without mtx or arava. I stopped arava a year ago when my liver enzymes were up. I've had great success until this month I flared. If I flare after this infusion (June 25) my RD says we'll have to change my therapy. I feel great after monday's infusion. It stopped the flare, which a cortisone shot was unable to do, so I'm praying it lasts.