My doctor called yesterday afternoon, and told me she was calling in a prescription of Prednisone for me to take to help ward off headaches and breathing problems with my infusions. I'm to take 20mg 1 hour before my infusion and 20 mg more 1 hour after my infusion.
I started mixing the Gammagard at around 5:00, and it took an hour and a half to mix this time because I paid more attention to it than I did last time. I rolled it gently between my hands. turned it over & over, and did that at more frequent intervals than the previous infusion. I took the first Prednisone when it was mixed. and took the 2 Benadryl at about the same time.
I've been having a problem with my infusion going too fast, and the pharmacy ships slower tubes to me, so I have a wide range of rate tubing (the only way to control the speed with my pump is by the size of the tubes...smaller tubes=slower infusion). Last week I used the 60ml/hr size tubing, and while it was better, it was still too fast, so today I got an inspiration for my infusion--I put 2 rate tubes in series to make the infusion even slower than last week! For those of you not familiar with the "in series" thing, it simply means that I attached 1 tube to the pump as usual, and then at the other end (where the needles would normally go) I used another rate tube, then attached my needles to the other end of that. The longer tubing makes the infusion slower than it would otherwise have been, so the whole infusion took about 6 hours.
This time when I primed the tubing, I clamped all but 1 needle off, and primed them all before putting any in my skin. Unfortunately, thanks to being dopey from the 2 Benadryl, I made a totally stupid mistake last night and forgot to unclamp 2 of my tubes before starting the infusion. I didn't realize the mistake until it was over, so I got the entire infusion in 3 sites instead of 5! I kept wondering why 1 leg hurt while the other one didn't. Thank God I'd slowed it down with the extra rate tubing, otherwise it would have been intolerable!
I also had breathing trouble during the infusion despite the Benadryl &; Prednisone. It's so strange, I hope that goes away. The doctor told me that systemic side effects are rare with SubQ, but for some reason my body doesn't agree with that. The Prednisone did help with the headaches. I woke up with a slight one, and haven't felt too bad all day. I had a severe ice-pick type headache that lasted for a few minutes (normally they're just seconds), but it faded and I was ok. I took 2 Tylenol this morning for the headache though.
This blog details the struggles that I have encountered while searching for a diagnosis and in getting treatment. If you get sick frequently and can't find answers, read this blog...it might steer you in the right direction! If you have any medical questions about things that are said on this blog, please consult a medical professional.
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