Hi all, after a month and a half of the 'infusions', my last talk with the doc's office nurse is that she doesn't think Remicade is working if I can't 'get off of prednisone' .....do you think??? so, she's got either Humira or Enbril as the 'new choice', any thoughts from you all about which is best? Worked well for you? Least annoying affects?, etc.
I'm not affraid of injecting myself (after what I went through with heart surgery almost any med procedure seems like a breeze to me) Oh, I'm getting a new heart doctor and dumping the cardiologist I hate! Sarah
I started with Enbrel, then Humira, and now Remicade. The only differentA month and a half is not nearly enough time to figure out if its working or not. Maybe you should back off on the pred taper, as much as you want to quit it, and concentrate on getting through a full remicade cycle. When you are sure that is working then you can start the taper. You can take the remicade dose all the way up to 10mg/kg of weight and shorten the infusion cycle to as close as 4 weeks. You do need to give it a real try before giving up
This was the comment from the nurse..what does your doctor say
Totally agree with everything buckeye says. I think you're kind of limited to the amount of Embrel or Humira you can take but the Remicade allows you some flexilblity. I would cetainly give the Remicade longer than a month and a half.Talk about between a rock and a hard place!! I think I should be able to be off of the prednisone and so do 'they'. I can't remember how many remicades, how often, but they increased the amount 3 times, and had me come in earlier the last two 'visits'. We'll see, but I don't mind continuing with remicade if I believe it will 'work'!!!!! They are amazed that I can't drop the pred. sarahcan you increase the mtxI agree.. give it at least 2 more infusions, and work on increasing the MTX. for me the magic number has been 6 vials, every 4 weeks, plus 20 mg of MTX a week... if I back off on either, or go more than 4 weeks, I really pay for it.Hi: good suggestions! Yes, adding more mtx (although my hair is falling out) is a thought. Also, maybe the plaquenil, like othr people take? Maybe I'm beyond that point and 'need' the super drugs remicade, enbril,humira? But, who knows? I'm just trying stuff anyway, why not plaq.? Oh well, I'll probably look back and wonder why they didn't give me ________sooner. Whatever that is ! Thanks for the responses, love sarahGive it 6 months. Spring has such bumpy weather it is hard to tell if the drugs are working or not. After 10 years of RA you probably have damage that will always hurt some...especially when weather changes, after sleeping, or sitting still for 30 minutes or more.
I can see with all the heart stuff you just went through that it might take longer. The first positive thing I felt on remicade was energy that let me clean the kitchen after dinner without having to 'kick' myself to get started. My husband actually called my attention to it!
Hi Sarah,
I have been on infliximab for more than 10 months now and at my last consultant appt they said they're going to stop it as it's not working. I have upped my MTX and my bloods just not showing any improvement. I feel better for a few weeks after having it but when we tried to quantify that it's not great - I feel better than I did without it but nowhere near living a "normal" life... My Consultant wants me to try etanercept (which I think is enbrel?) so I'm going back to see them 4 weeks after my next infliximab infusion to arrange that (they have upped my MTX again in the meantime to be sure it won't make a difference). Here in the uk there is some controversy about trying another anti-tnf if one doesn't work but the team I see are fantastic and the hospital is a regional research centre for rheumatology so they are less afraid to stick their neck out.
I was a little nervous when they talked about injecting myself but actually think it's less inconvenient than spending a few hours in hospital every 8 weeks having my infusion...
In your case I would say give it a bit longer - one major issue I have found is that it's difficult to balance "giving it a bit longer" with flogging a dead horse but originally I was told to give it 4 months to get working...
Good luck whatever you end up with!
KT
I'd say give its some more time too. You've got a good bit of wiggle room there with the MTX too. I'm not sure why it hadn't occured to them to increase that. Sarah, are you on folic acid? It wasn't listed in your signature. That really helps a lot with the hair falling out issue. We need to be on it because the mtx causes a folic acid deficiency.Hi Gm, yes I take folic (1mg) should I be taking more?
What about adding plaquenil?? to my chemical soup bowl?
whattya think? Sarah
I think adding plaquenil or sulfasalazine or arava, increasing your MTX, stopping the pred taper or any combination of the above are all valid options and should be discussed with your doctor before you next scheduled appt.
The only concern he may have with adding something so early in your remicade treatment is that if a new side effect occurs it would be difficult to determine where it comes from. It would also be difficult to decide which med is working for you so you could end up on a higher dose of medication than you need. If it were me the preferred options for the time being would be to increase the MTX and stop the pred taper..but that is me
Yes, I'm not tapering any more! in fact i'm back up to 10mgs. for the rest of the month or until the 21st. and the remicade's next infusion (unless they change their minds???). DIDN'T CALL ME!!
do they make a lot of money on remicade? Do they make any money if we inject ourselves? Just wondering???? It costs 00 per visit. How much do they get? of that?
I'm getting synical, but I never liked the remicade and wanted to go to embril right off, I'm leaning that way. More mtx might be a help? thanks for your thoughts, sarah