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Remicade dosage doesn't seem right.
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snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 2/24/2017 2:02 PM (GMT 0)
Remicade dosage is based on body weight, but I don't think that formula works quite right. I have gained a lot of MUSCLE over the last few years, and my dosage keeps going up. It is starting to make me feel like garbage for a week after the infusion. I wonder if the dosage should consider your body composition. I'm thinking of either asking my doctor to lower the dosage (risky), or just losing some of my muscle so the dosage will go down. It's hard feeling awful for 8 weeks out of the year.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 2/24/2017 2:21 PM (GMT 0)
I wouldn't lose the muscle if you've worked hard to gain it and want to keep it. Talk to your doctor about
the reason for your weight gain and wanting to lower the dose - it may well be that you are on a higher dose than you need to be. What dose are you on now, do you know?
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 2/24/2017 2:34 PM (GMT 0)
I think I'm at 5mg per kg. I weigh 211 right now, and just 165 when I started, so that's a huge increase.
scifigal2k
Veteran Member
Joined : May 2012
Posts : 3704
Posted 2/24/2017 2:47 PM (GMT 0)
They actually usually round the dosage, though, to the nearest 100. When you started, you weighted 165 lbs = 74.8 kg. Multiply that by 5 mg, and you get a dose of 374 mg (which they would probably round to 400 mg). Now you weigh 211 lbs = 95.7 kg, giving you a dose of 478.5 mg, which would probably round to 500 mg. But that jump from 400 mg to 500 mg would have happened only one time, and at 90 kg, or 198 lbs. I don't think that it's the dose making you feel crummy.
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 2/24/2017 3:17 PM (GMT 0)
Thank you. I couldn't get that kind of answer out of my doctor. He just suggested taking me off Remicade, which I think would be a huge mistake.
Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1356
Posted 2/24/2017 3:25 PM (GMT 0)
I agree with @scifigal and @NCOT. How long have you been on it? Let your doctor know whats going on and ask about
checking your Remicade level. everyone is unique to some extent in what level works best for them though generally i believe between 5 and 7 is ideal. I do better with it higher around 11 but I do have crumby periods like you describe, however they were worse when my doctor lowered the Remicade dosage to see if that would get rid of the body aches and general ill feelings. I ended up going back to the 5 mg/kg dose and with in 3 weeks of the lowering the dose.
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 2/24/2017 3:33 PM (GMT 0)
I've been on the 'cade for about
11 years. Honestly, I'm not sure of my dosage. I know I was at 10mg for a while. Pretty sure it's going to kill me, but it beats the alternative.
Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1356
Posted 2/24/2017 9:50 PM (GMT 0)
Yeah... I try not to think about
it. In general it gives us some form of life back. 11 years, that's really fantastic though! Maybe it's not enough if at some point you went from 10 back to 5? I don't know, it always gets a bit confusing at least in my experience trying to figure out what is causing what .
clo2014
Veteran Member
Joined : Feb 2015
Posts : 2324
Posted 2/25/2017 2:43 AM (GMT 0)
Snappy,
I would have my Remicade level and antibody levels checked.
Just beware that the test can be expensive and sometimes insurance does not pay for it. They do have an assistance program for the payment though so I would ask about
that.
Clo
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