Eighth Gammagard S/D Infusion

I had my infusion today, and overall it went pretty smoothly. I tried new areas and shorter needles today, and 1 site leaked during the infusion. I also vomited again before starting the infusion and I'm starting to think that's due to a combination of migraine with mild nausea, PMS and a reaction to the first needle hurting and maybe a bit of anxiety just to make things fun. Both times that I vomited were about 5 minutes or less after having the first needle was put in and it hurting. I don't know why that would be a factor, I mean, I don't faint or throw up when I get my blood drawn or IVs, so why should this be different? I also don't vomit every time a needle hurts. It doesn't make sense that it's just anxiety, but perhaps a combination of all of the above just makes a bad mix. I've also started hydrating with 50% Gatorade and 50% smart water in case the Gatorade has been contributing to my nausea.

I had to put the needles in a place other than my thighs today because I have a rash all over them from last Friday's infusion. This time I chose the love-handle area and my lower back. I couldn't see to put the needles in so my mom had to do most of them. I took a nap and laid on some of the needles (they didn't hurt since they're the 6mm ones) and the one with the most pressure leaked onto my sheets. I have what looks like a water stain on my sheets and I hope it will wash out. I finally just clamped off that one site for most of the infusion since it wouldn't stop leaking. None of the other sites leaked. Although none of the needles were in my stomach area, my belly still bloated from the infusion. The needle sites aren't painful now, but I'll have to see how they are tomorrow. I hope the rash on my legs goes away soon because I really prefer my thighs....I wonder how the calves would be?

I'm doing pretty well. My pharmacist suggested that I take 20 mg of prednisone when I first eat tomorrow rather than tonight, so that might prevent the back-lash reaction that I seem to get the day after my infusion. I'm going to give that a shot...she also said I could try 10 tomorrow and 10 the next day...we'll see how tomorrow goes.

Update...
Thursday, 12/30/10

I didn't have any bad reactions the next day, and I've come to the conclusion that the pharmacist was right about the Prednisone causing a backlash reaction. The Prednisone affects my mood and makes me irritable, but it's better than migraines, breathing trouble, and rashes. I felt pretty good during the week and was able to have a nice Christmas. I think we are finally on the right track! :D

Update

The specialist called and told me that they've started the process of authorizing the switch from Hizentra to Gammaguard SD with my insurance company. They are planning to have me start at one treatment a week. She also said that the specialty pharmacy (Accredo) said that if my insurance is cooperative then I could be transitioned in a as little as a few days. I'm planning to just skip treatment this Friday since even if it all gets approved this week, they won't be able to get the supplies to me in time.

If my insurance company causes problems or drags their heels too long, I might have to go back to doing Hizentra, but the doctor said that they'd give me steroids so I could get through it without a reaction. I really hope that doesn't happen! Wish me luck people! :)

Even though it's now days after my last infusion, my legs where I inserted the needles are still very itchy, and I'm getting a rash there. Last night the sites were lumpy, not from a build-up of medication this time, but from the rash.

Fifth IVIG -- Continuing Side Effects

 I talked to my doctor yesterday about my infusion rate, and how the last infusion caused me to break out in hives for a week, and she said that they infused me an hour faster than she had asked of them. She said she'd tell them again to slow it down, and I told her about how a person from my support group said she gets it starting at 50 and increasing by 10 every 15 minutes. My doctor said that the infusion center wouldn't tolerate that because they "need the chair for other patients", and that it would take too long that way. Apparently my current rate (that they didn't do the last time) is starting at 50 and increasing by 20 every 15 minutes. I'm toying with the idea of calling to talk to the head nurse and find out when their slowest day tends to be each week, and having them schedule me for that day. I know they start their chemo patients first every day, but they might let me come in even earlier and let me stay as long as I need if it's not such a busy day. I think that way, when I go back to work I might be able to have my infusion on a non-busy day, and if I'm only out 1 day from it, it wouldn't be an issue.

My hands and feet are currently broken-out in a very itchy, scaly rash of small blisters. I believe it's a bad case of eczema, because the last time I had something like this the dermatologist said it was either athletes foot or eczema and she couldn't tell which. The athletes foot medication (even though it was prescription) didn't help at all, but when I used the super-strong eczema cream that she'd given me it cleared up right away. It hasn't been as effective this time, and I think that hand sanitizer has made the hand part worse.

*Note: The hives and eczema breakouts were both caused by the IVIG being administered too fast for my body to tolerate. I had hive breakouts every day for about a month, and it took about 6 weeks for the eczema on my hands and feet to clear up after another visit to the dermatologist.