My doctor is happy with what Enbrel has done with my ankles, knees and hands (vastly improved), but my SI joint, lower back, neck and chest have been killing me lately. I can't take mtx, so he wants to put me on Remicade infusions if he can get insurance to approve it.
Does anyone have experience with remicade? Please tell me the good, the bad, and the ugly!
Remicaide is the first biologic that I was given some 12 yrs ago. The Good, you only have 1 infusion a month and the side effects are usually minimal. I had to have an injection of benadryl before treatment to help with some of the small side effects I was experiencing (headache, flush feeling). And you may not have any which makes it even better. The Bad, normally it's a 2-3hr. drip. So it does take some time. We were all in the same room at the hospital every month, had to be about a dozen of us. So it got to be a social event every month, since nobody was going anywhere for 3 hrs.. As far as the Ugly, I did not experience that part other than it only worked for a year with me hopefully it will help your symptoms better and for a longer duration. Good luck. Stay Well.......Rich
Expense is huge. Even if your insurance company approves the drug beware the costs that can suprise you depending on your insurance.
Not every locale has an infusion center so it can considered an "outpatient" procedure in the hospital (while drugs have a copay that can be quite low, other stuff can be quite high)
Some insurances consider costs of infusion differently than the drug itself. This can easily add several hundred a month. particularly if they put the associated costs towards deductible and/ or your stop loss..
When it works, it works well, BUT it is a humanized biologic meaning it was produced in mice (I think) In any event, you often will build antibodies so they do some co-therapy (can anyone say MTX) to avoid that.
If you have the spondylitis form of PsA , it is not terribly effective against Iriditis. so you might have to change again (which can mean several moths of less effective control while the new one takes hold.
In my opinion which prolly isn't worth much I would never change Biologics unless the one I was taking quit working WHY fix what ain't broke? Its takes time for any to get on board to start working. What do you do in the meantime????
Thanks for the input!
There is an infusion center. My doctor is working to get my insurance company to cover it in full. Not sure it will work, but I'm hoping.
I can't take mtx due to liver issues, which is one of the issues with me being on Enbrel - the treatment would be more effective if I took mtx as well. The reason for the change is that my doctor can change the dosage and find one that works best for me, which isn't an option with Enbrel...and the Enbrel, while helping my ankles and hands isn't touching my SI joint, my back, neck, or chest. I do have the spondylitis form and as of yet, no sign of iritis.
What do I do in the meantime? Well, homeschool co-op will be done next week and we have 2 vacations coming up - so LOTS of rest and relaxation ... well, as much as can be had with 5-10 kids....
My first infusion is a week from Friday. They want me to stop Enbrel as of my injection this past Friday, which means I won't have anything in my system this weekend and through next week. All of a sudden I'm starting to freak out about this. Ugh.
Good luck with the Remicade Nym. My personal experience with Remicade was a successful one. I didn’t have any serious side effects, I did feel a little nauseous and light headed but nothing I couldn’t handle. I actually had a couple years of remission which gradly came about six months after I had finished the infusions. I believe the Remicade may have contributed to it. I am currently on Humira and Methotrexate and doing fairly well. I wish you the best!