I got my second Remicade infusion on 2/27. I had nearly the same experiences as my first infusion.
Side-effects
My infusion side-effects were mild - 24-36 hours of mild headache plus 2-3 days of feeling exhausted. Other than those, I've had no other direct signs or symptoms of the drug positive or negative.
Infusion
The infusions start with an extremely slow infusion rate (3 ml of fluid over 15 minutes) and progress up to pushing it in 3x faster than the standard infusion rate. I mentioned to dad that this seems like the concept of "Proof Firing" that gunsmiths used to verify their guns were ready for use.
As I reported in my previous post on infusions, all three of the loading / induction doses use the same infusion timing. In my last blog entry I put in my estimate dosing. This time I got a copy of the infusion dosing from the nurse. This is what that table looks like:
VTBI - Volume to be infused
Benefits
Side-effects
My infusion side-effects were mild - 24-36 hours of mild headache plus 2-3 days of feeling exhausted. Other than those, I've had no other direct signs or symptoms of the drug positive or negative.
Infusion
The infusions start with an extremely slow infusion rate (3 ml of fluid over 15 minutes) and progress up to pushing it in 3x faster than the standard infusion rate. I mentioned to dad that this seems like the concept of "Proof Firing" that gunsmiths used to verify their guns were ready for use.
As I reported in my previous post on infusions, all three of the loading / induction doses use the same infusion timing. In my last blog entry I put in my estimate dosing. This time I got a copy of the infusion dosing from the nurse. This is what that table looks like:
|
#
|
Time
(min)
|
Dur
(min)
|
Rate
(mg/hr) |
Rate
(ml/hr)
|
VTBI
(ml) |
|
1
|
0
|
15
|
16
|
11.6
|
2.9
|
|
2
|
15
|
15
|
32
|
23.2
|
5.8
|
|
3
|
30
|
15
|
64
|
46.4
|
11.6
|
|
4
|
45
|
15
|
128
|
92.8
|
23.2
|
|
5
|
60
|
30
|
240
|
174.0
|
87.0
|
|
6
|
90
|
30
|
400
|
290.0
|
145.0
|
|
7
|
120
|
End
|
end
|
end
|
end
|
VTBI - Volume to be infused
Benefits
Indirectly
I've noticed a substantially increased percent of "good days" vs. "bad
days". Before infusions only 1/4 - 1/3 of my days were good days with a
similar or greater number of bad days. Since my first infusion, the
ratio improved to around 2/3 of days being "good days". The quality of
the days hasn't changed. My bad days are still as bad as they used to be and my good days are about the same as my good days from before Remicade.
Specifically, the two areas that improved were my bowel movements and pain levels.
My average number of bowel movements declined from 10-15 per day to about 5 per day. Even better, I stopped needing to go to have BMs at night. I'm still not sleeping well through the night but this improved things a bunch.
I used to require on average 1 pain pill per day (some days needing 2, some days needing 1, and some days not needing any at all). Since my first infusion, I needed less and less pain medication. Lately, I've only needed about 4 pain pills over the previous 14 days. That is a significant improvement.
I think both of these are due to Remicade. However, I'm still waiting for more definitive evidence that it is working for me.
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