Sixth IVIG Treatment

IVIG #6

Today I had my 6th treatment, and it went so much better than the previous 5! I'd gone into the infusion center on Monday and spoke to the charge nurse about how the last treatment caused me so many problems, and I didn't think that she would be very helpful as her response was "we can only slow it down if your doctor orders us to". When I walked in today I was dismayed to see that she was my assigned nurse, but she said "don't worry, I know what's going on, we'll take it nice and slow today". She started me at 25 cc/hr, and then increased to 50, then 75, and 100 at 15-minute(?) intervals. She told all of the other nurses to not take me up higher than 100! I don't know how it worked, but I was out of there at 2:30 after going through my usual 24g of IVIG, which is the same time that I get done when they take me to 175. I was much less dopey than normal too, despite having all of the normal premeds. I don't know whether the caffeine that I had early on caused that or whether it was simply that the infusion wasn't as overwhelming as usual. I feel almost normal right now, and I'm excited with hope that it might get easier for me to handle this and go back to work full-time! Here's a little tid-bit that the nurse told me about IVIG. She said that every brand has differences that impact the speed at which it can be safely administered. Some brands are highly concentrated, and therefore have to be administered at a much slower rate; whereas my brand is highly diluted and is generally well-tolerated at higher speeds. I guess when we compare speeds, we should also take concentration into account. I'm not sure where to find that information out but the one that they give me is called Carimune NF, and is the only brand currently available at my infusion center.


Update
Monday, June 7, 2010
I've been on Prednisone for about 6 days now...maybe a little longer, and am having some problems with side-effects. My doctor only gave me 20mg/day for 4 days, 15mg/2 days, 10mg/2 days, and 5 mg for 1 day. I'm about to transition to 10mg starting tomorrow. I feel like I've had too much coffee, feel very shaky, and have been having a lot of trouble sleeping at night. I'm trying to make a point to take extra calcium while I'm on it. The rash is clearing up finally, at least. I saw the dermatologist, and she agreed that it is eczema, but that it was triggered by my infusion a month ago (5/7). I'm having a 4-week break between infusions this time, so hopefully the rash will be gone by the time I have my next one on 6/25. In the meantime I've been avoiding any foods that I'm suspecting that I'm sensitive to, which is making grocery shopping and meal planning pretty awkward for my mom.

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.

Aftereffects of Fifth IVIG Treatment...and Worst Ever!

Space Cadet

All of this week I have not been functioning! I am very spacey, making lots of typos when I write, forgetting how to spell words that I KNOW, and unable to do basic math. On top of that, I've been misreading a lot of words and also unable to focus on much of anything. On Tuesday I completely missed a dentist appointment and didn't remember it until 10:00 PM, and I also forgot all of my medication that day up until 7:00 PM. That includes seizure meds and asthma meds, and I've kind of been wondering whether I've been having some absence seizures or something and if that's why I'm so out of it. One thing I do know is that I've had hives nearly every night since my infusion and have had to take benadryl every night so I don't spend the whole night scratching. I'm sure that's at least part of the spacey problem. I saw my therapist today and mentioned that I didn't think it was due to depression, although I tend to get into a similar state when I'm very depressed, but she agreed that I don't seem depressed at all.  

I definitely want to have them slow down my infusion rate because if this is all post-treatment stuff...which I think it is in one way or another...then that's ridiculous! One person told me that she starts at 50 and increases it by 10 every 15 minutes to 150. Considering I usually have mine at 175, that sounds like a good place for me to start. I hope that it won't be a big fight with nurses to get them to slow down, but I think my doctor will back me up on it.

Fifth IVIG Infusion

I had my fifth infusion on Friday, 5/7. It went very well, and I think that perhaps the nurse must have gone through faster transitions than normal, as I was done an hour earlier than expected. I haven't had any real side-effects other than exhaustion and weakness. Neither of them were as bad as usual, yet they both seemed to last longer than they have recently. I'm not sure whether that's due to the speed of the infusion, or just the thing that every infusion is different. I know that the nurse went to a maximum speed 175, which is my normal maximum. Today (Monday), is my first day to feel strong enough to sit at the computer.