7th Gammagard Infusion...An Odd...One

So I had my 7th infusion today and something very odd happened. After the needles had been in for about an hour I noticed blood under the adhesive. It wasn't a lot, but enough to soak all the way out and stain my clothes after about 10 minutes. I called my nurse to find out what to do as I'd never encountered that before. I did check the sites before starting the infusion so I knew that it wasn't in a vein.

My nurse told me to clamp off the tube and apply pressure to the site (which freaked me out a bit since that seems that it would mean pushing the needle in even further). I applied pressure directly next to the needle and after about another 20 minutes or so I could tell that the blood was starting to coagulate and look darker, I'm not sure when the bleeding actually stopped though. After about 30 minutes I unclamped the tube again and let it run.

During the infusion I had more shortness of breath and tight-chested feeling than I did the previous time. I took my inhaler a lot, and ended up getting the jitters. This time I'd taken 20mg of Prednisone and 2 extra strength Tylenol ahead of time, but forgot to take the 50mg of Benadryl until the infusion had been going for at least 30 minutes. I forgot to take my inhaler for about an hour.

This infusion only took 6.5 hours because I made a point of paying attention to the syringe-change time. I wish I'd noted the correct time in my log so I'd know exactly how long it took, but I was very tired today (I've had trouble sleeping since Monday night), and I just absentmindedly jotted down 4:00 PM, but it may have been as late as 4:15.

I took another 2 Tylenol about 3.5 hours into the infusion, as I felt a headache trying to start. I took another 2 Benadryl at about 11:30 (after the infusion), and I'd taken the 2nd prednisone around 9:00. The prednisone is kind of touchy, as I need to take it with food, but I'm supposed to take it 1 hour before and one hour after. Instead I take it with lunch (or whatever meal I have as I'm getting things set up), then if dinner seems too close to the start time, I have a good-sized snack later. Tonight I had 2 snacks: a bowl of uncooked oatmeal with chocolate milk (yummy...you should try it), and some leftover spaghetti about 3 hours later. It's abnormal for me to get that hungry that soon after eating something substantial, so I think the prednisone is increasing my appetite. 

The infusion ended at about 10:30 PM, and it's now nearly 3:30 AM. I'm tired and I hope that I'll be able to sleep through the night. That's doubtful though since I drank over 100 Oz of fluids today and will probably wake up for the bathroom a lot.

First Solo Infusion of Gammagard S/D!

The people at Accredo were great and sent me tubing to help slow down my infusion rate, so I expected things to be much better.

I made some rookie mistakes this time:

• Took my premeds 20 minutes after adding the saline to the powder. By the time I was ready to put the needles in I was pretty dopey from the Benadryl. It took 2 hours for the powder to dissolve completely, and another hour for me to get the needles in. Next time I need to take my premeds when I'm ready to start hooking up the needles.
• My nurses had suggested that I clamp off all needles but 1 to prime them, so I tried that this time. I primed 1 needle and put it in. Then I primed the next one, forgetting to clamp off the needle that was in me before pushing on the syringe. It hurt quite a bit to get the medication in at that rate, so I learned my lesson quickly. Probably wouldn't have done that if I hadn't been loopy from 50mg of Benadryl.

Throughout the infusion I had pinching and swelling at the infusion sites that I hadn't clamped off during priming, and had to turn the pump off twice for 15-minute breaks to allow the medication to absorb. It took me 3 hours from the time I started mixing the Gammagard S/D until I started the infusion, then the infusion itself took 5 hours due to using 60ml/hr tubing and taking breaks.

Because I'd taken 2 Benadryl 2.5 hours before starting the infusion, I took another 2 Benadryl 4 hours later and really struggled to stay awake long enough to swap out my syringes in the pump. After another couple of hours I had a slight fever (99 degrees, but my normal temp is 97-ish), headache, and was starting to feel achy in my lower back, so I took 2 more Tylenol.

After the infusion was over I felt a migraine trying to start at the base of my skull. I didn't want to take any more Tylenol, but I took 2 Aleve (not supposed to because of my stomach) and a Clonazepam to help relax my muscles.

Next Day...
This morning I woke up with a migraine threatening (not too bad though, I was still able to work). I took 2 Tylenol without it helping much, and took to Ibuprofen after a few hours when I wasn't getting much relief. I finally called my chiropractor and he was able to help a lot by massaging at the base of my skull and my shoulders and neck. I've been tired all day and worked on my laptop in bed because I didn't really feel energetic enough to sit at my desk all day. Nevertheless, I think this is the best drug for me of any that I've tried so far. My reactions to Carimmune and Hizentra were pretty bad, with the Hizentra being worlds better than the Carimmune. I really believe that my non-existent IgA is a huge factor in how they affected me.