Seventh IVIG Treatment

Infusion #7

Friday, June 25, 2010 

I'm getting my infusion right now, and it's been kind of strange so far. My doctor cut the hydrocortisone down to 50mg rather than 100, and then told me to cut out the Ibuprofen. 

I got really nauseous and nearly threw up and fainted when they first started the infusion. I don't know why, but I know that it was anxiety this time. It may have been because they blew a vein for the first time, and that just kind of freaks me out and hurts like the dickens! Mom got me some ice for my head, and I had to cut out the built-in bra on my tank top because it was putting too much pressure on me and aggravating the nausea.

The nurse started me at 25 cc/hr and raised it to 50, then 75, then 100. When it appeared that I would be done in 4 hours again, she slowed it back down to 75. I'm a little annoyed because I'd told her that I wanted to take the full 6 hours for it to see how much better I'll get.

Mom made a point of telling the nurse that she's recorded my infusion start time as 10:05, but that's more like the time they started the Benadryl drip. When she complained about it, the nurse dropped the speed back to 50. I'm really trying to find out what works for me, and them trying to rush it and going all over the board for speeds is probably not going to show me what an "ideal" infusion can be like.

I'm really gearing towards Sub-Q now :)

So, the infusion finished at 50 and took about 7.5 hours. I felt great when I left and was able to walk out of my infusion center for the first time rather than leaving by wheelchair! I'm so happy about that! I feel normal or maybe better than normal and I have some hope that these treatments are going to work for me now. Yay!! :D

I think next time I'll tell them to max out at 75 & just leave it there.

Update

It's now the morning after my infusion and I feel the best that I've ever felt after one. In fact, I feel like if I were working, I'd have no problem going to work within a day or so. The only things I notice today that might be from the infusion are lower backache and a headache. I took a Benadryl before bed to help with any lingering side-effects.

I'm amazed!  

Tuesday, June 29, 2010 

I had my infusion (#7) on Friday, and as I said in the previous journal entry, I tried to keep the speed of it down. I can't believe what a difference that has made to how I felt afterwards! I mean, normally I have some trouble breathing, I'm a zombie, itchy, and can barely walk during and after the infusion. Then, when I get home I have to sleep for at least 3 hours, and I'm so weak and exhausted that I can't even lift a normal glass of water. 

By way of comparison, when I left the infusion center, I felt good enough to walk out on my own 2 feet, then I only slept for an hour afterwards. I went home with my boyfriend that evening, and wasn't even concerned about being far from the hospital. Then, Saturday I went shopping at Best Buy and bought a router and upgraded my cell phone...so I was there for 3 hours, and had no problems. I did sit down while upgrading my phone, otherwise I wouldn't have been doing so well. Sunday I went to a baseball game with my boyfriend. Granted, he took me in my wheelchair to help stave off exhaustion and I wore a mask, but nevertheless it was such a tremendous improvement over any other time at least since I've started treatments, but more likely for the last 3 years since my seizures started. I started getting tired towards the end of the game, but after we got home I still felt well enough to go for a swim (another first in 3 years) before dinner. All in all it was a wonderful weekend, and I'm very hopeful that I will continue to improve! :D

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.

Fourth IVIG Treatment

I had a smooth infusion today. My doctor asked the infusion nurses to give me the hydrocortisone before the Benadryl to prevent the strange reaction I had yesterday. I had no reactions, and slept for the first 3.5 hours of the treatment. The entire thing only took 4.5 hours...my fastest yet!


Last night I drank 66oz of both Pedialyte and Smart Water , and was in a much more positive frame of mind for this treatment.


I slept 3 more hours after having lunch when I got home. and after I woke up I had the sudden hunger that I always seem to get after my treatments. I had a healthy dinner and raspberries for a snack, and I actually feel ok and have a little bit of energy. It's kind of encouraging! I'm not holding my breath on the next few days being great, but I'll take it one day at a time. I have a headache and body aches, but they're minor. I think I'll take a little Benadryl tonight.

Third IVIG Treatment

IVIG Treatment #3

Friday, March 26, 2010 

Today I had my 3rd IVIG treatment. I went in at 9:30 and left at 2:30 PM. I had no bad reactions except before they started the medication I had a reaction that I had never seen before to either the Benadryl or Saline. My veins turned scarlet--you could even see the red through the paper tape! The red was darkest near my wrist where they inserted the IV, but I had streaks following the veins up to my elbow, and it hurt a bit. The nurse said that it was an indication of irritation to the surface veins, and after she gave me the hydrocortisone shot that I was going to get anyway, the redness went away and the burning stopped. I was very sleepy at the time, so it didn't phase me too much. My personal theory is that the reaction was caused by the IV needle going into my vein at the inner side of my wrist. I've never had an IV there before, and it was quite painful going in.

I fully intended to sleep, but mom found donuts in the infusion center, so I had one w/ a cup of real coffee, and the sugar/caffeine combo woke me up. I ended up staying awake and watching a movie with my mom. When the movie was over, mom read to me for a few minutes, then it was time to go home. After getting back home I had some lunch and then napped for about an hour. My wrist still hurts/stings a bit. I feel pretty good at the minute, but I'm trying to not overdo it...that's kind of like telling the wind not to blow. Anyway, just wanted to write a quick update, then I'm getting back in bed.

2 days after 3rd IVIG treatment

I'm feeling weak and tired still. I had hoped to feel more energy by now, but maybe I noticed it so much after that first treatment because I was so low when I started. I slept 12-13 hours last night, and am getting ready to get back in bed again now (I've been up 2 hours). I think that if I don't feel well enough to go in to the office this week that I'll talk to my doctor about going on short-term disability. It's just so hard to get my hours in every week, and I'm truly afraid that if I don't either get in to the office soon or go on disability I'll get laid off in May. I hate worrying about financial stuff when I'm in this condition. I think I'll try to just put it out of my mind for now, and trust that everything will work out.