Ninth Gammagard S/D Infusion

I had my infusion yesterday at my boyfriend's house. I wanted to do it early so that I would be able to have a glass of champagne on New Year's Eve. I found out the rough way that if I have alcohol within a day of my infusion that it will make me feel truly awful due to the dehydration that it causes.

I noticed that I was feeling a bit dizzy and anxious when we were getting ready to do the infusion, so I asked him if he felt comfortable doing the infusion if I were a bit dopey on Benadryl. I had been feeling sick and tired for the previous 2 days, and, as usual, there are too many variables to really know what was going on. I may be fighting off an illness. I noticed that I never had the anxiety issues with the Benadryl in my system and that it would calm me. I only took one so that I would still be able to coach him as needed. He was wonderful, and did all of the needles for me. Some of the needles hurt due to the Gammagard having gotten into them, but it didn't phase me. I took the 2nd Benadryl after the infusion had started and took all the regular premeds at the appropriate times. I had to take my rescue inhaler periodically during the infusion, and more Tylenol (as I had a headache that wouldn't go away, but didn't take more Benadryl. The infusion took about 7.5 hours with me closely monitoring the pump to change the syringes.

Benadryl (AKA Diphenhydramine)

Tylenol

This was the first time I used the 6mm needles in my thighs, and at first I was excited because it seemed to be so much more comfortable than the 9mm needles. I stayed awake throughout the infusion and didn't put any serious pressure on any of the needles, but about halfway through my infusion one of the sites started stinging severely. I asked my boyfriend to look at it and he noticed that the Tegaderm was lifting around the needle, and when I got to where I could sit down and look at it in good light I saw that the site was actually leaking. I tried putting a pressure bandage over the needle to stop the leaking, and it seemed to work at first, but then it started up again. I had to clamp that needle off and finish the infusion in 4 sites.

Today the sites still look white and swollen (which is unusual for my thighs), and I've come to the conclusion that I need to go back to the 9mm needles. I think that the extra stinging is due to the fact that the Gammagard wasn't getting into the fat layer but was going in between layers of my skin. With the 9mm needles I would have leaking after an infusion, but never had leaking during an infusion. I'm glad that Accredo let me try the 6mm needles without taking the 9mm needles off of my order.

I took my second Prednisone this morning and have had some irritability and gloomy thoughts today, but I seem to be breathing well and feeling relatively well. I still don't know whether I'm getting sick or not. I sincerely hope not.

Sixth Gammagard Infusion

I've had kind of a rough week, so I'm behind on writing about this. It's actually exactly a week later and I'm doing my 7th infusion right now, but I'll post about this one separately.

My 6th infusion went very smoothly. The whole thing took 7 hours, but I made it through the infusion with only 50mg of Benadryl as well as the 20 mg Prednisone, inhaler, and Tylenol. As usual I had insomnia after the infusion. I'm still not sure whether the insomnia is caused by the infusion itself or the steroids or both. I know steroids can cause it, but I think the infusion itself does too. I took 20 more mg of Prednisone towards the end of the infusion too.

I noticed a slight headache (if I remember correctly) towards the end of the infusion, so I took some extra Tylenol later. The next day (Saturday) I woke up feeling tired and weak, but not to the point that I've come to expect. It was much milder overall, and I was actually able to have a weekend where I felt almost like a normal person!

Gammagard 5 (almost sounds like a band name)

I had my fifth Gammagard infusion yesterday. It went pretty well, and there was no vomiting this time. We got off to a late start with it, and so the infusion didn't start 'til 6:00 PM, then I spaced out on changing the syringe halfway through, and so the infusion didn't end until 2:00 AM. I think I need to set a timer for changing it.

I took my benadryl at the very start of the infusion. That's the best way that I can insure that my brain won't be foggy when I'm setting everything up. I'm a small person, and 50mg of benadryl is mentally overwhelming for me. I have a hard time following a plot on a tv show on 50mg of benadryl, let alone giving myself an infusion!

This time though, my boyfriend put all the needles in me. He's squeamish about needles, but does it to make it easier for me. I very much appreciate it, as it relieves a lot of my stress.

I had some breathing trouble during the infusion, but it was very slight and I took my rescue inhaler at the start and every 4 hours during until I went to bed. I also took another 2 benadryl and 2 tylenol 4 hours into it.

Today I feel weak and tired, but after 4 benadryl yesterday, I'm really not surprised by that. I'm continuing to hydrate well, and don't have much pain other than waking up with a headache that more tylenol seemed to help. I've pretty much spent the day in bed.

I'm continuing to hope that my infusions will get better and easier and I'll start needing less medication during them. 

Thanksgiving and my Fourth Gammagard Infusion

On Thanksgiving Day I had 2 asthma attacks and a migraine. I was doing ok, but the candles at dinner, smoke on people's clothing and perfume all served to aggravate my breathing and I ended up having a very embarrassing (all public attacks embarrass me) asthma attack in front of my boyfriend's family. They were great about it, and helped me get some tea and water (tea helps loosen my chest), and were very considerate and kind about everything. I just hate being the center of attention like that, especially when I don't know people that well. I took 2 Benadryl, had extra caffeine in the hot tea, and took my inhaler probably about 3-4 times.

Then we went to my home for dinner #2 with my mom. I was doing better and pretty much held my breath from the car to the house because of all the chimney smoke in the air (I was wearing a mask too). I sat up in bed to recuperate from the attack until dinner was ready. I felt hungry but exhausted and nauseous. When dinner was ready I was so nauseous I could hardly eat despite feeling hungry, and I had a migraine on top of it. I took some Tylenol for the migraine. On the way back to my boyfriend's house, when he put the car's heater on defrost the smoke sucked into the car, which triggered attack #2. Luckily it wasn't as bad as the first one.

The Infusion

Friday morning I woke up with the headache, but it wasn't as bad as the night before. I got ready to start my infusion and had just put the first needle in when I started vomiting violently and came very close to fainting. I was so sick that I thought I'd have to go to the hospital. My vision became completely obscured by what looked like snowflakes, and I wasn't able to focus for probably close to 5 minutes. My boyfriend got me a Zofran, and totally took care of me; about 10 minutes after that I felt better. I don't know why I threw up, but I do know it wasn't related to my infusion. I had to teach my boyfriend how to do my infusion because I was not functioning very well; he put most of the needles in for me. I had taken a prednisone about 40 minutes to an hour before I vomited, and I was hoping that I'd have enough in my system to keep me from reacting to the infusion. I also took my inhaler, along with the 2 Benadryl and 2 Tylenol as premeds. Once again I put the 60 ml/hr tubing in series with the 120 ml/hr, and the infusion lasted for a total of 6 hours. I had some swelling and pinching at the injection sites, but never enough that I had to turn the pump off. I didn't have any breathing problems either! I took my inhaler again 4 hours into the infusion, and I had a very slight tightness in my chest at the very end and took my inhaler once more. Overall, I felt that the infusion was very successful! :)

The Next Day

Today I woke up feeling very weak and shaky. I had trouble sleeping last night after the 2nd prednisone and ended up taking 2 Benadryl again to help me sleep and prevent reactions during the night. I eventually fell asleep about 4:00 AM and slept fitfully til noon. My chest hurts a lot. It hurts to breathe deeply or laugh or cough, but I'm hoping that's just from the vomiting yesterday, and not my lungs. I'm eating very cautiously and very small meals because I want to avoid a recurrence of yesterday. I'm still in bed because I feel so weak, but I don't have a migraine, and the shortness of breath I've had seems more related to the chest pain rather than asthma.

Visit to my Neurologist

The week  following  the infusion I was able to see my neurologist about the temporary blindness that happened after I vomited. He believes that the blindness was caused by a migraine and put me on a blood pressure medication called Verapamil to help relieve the pressure in my head. He said that there's a migraine specialist who he knows at UCSF who treats neurological migraines (ones with strange things like blindness, numbness, the room spinning, etc) with the short-acting form of it, so I have to take it 3 times a day. The medication seems to be helping because I've been having fewer headaches. 

Two Days Later

I woke up feeling decent today...not great, but not horrible either. I had to take a Fioricet last night because I did feel a headache trying to come on, but it was gone by this morning. I even felt well enough to do my 5-minute workout today! The knots on my belly are down to 1" in diameter or smaller today! :)

After I'd been up for awhile I got very tired and had to take a nap. I've remained tired all day. I plan to try to sleep early tonight.

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.

Went Out With Friends...

One of my best friends from out of state has been in town this last week, and I went out to dinner with her and a bunch of friends last night. After dinner we went to a pool hall, and I didn't play, just sat on a chair the whole time we were there and chatted. I wore a mask constantly except when I was eating at the restaurant. 

By the end of the night I felt completely exhausted. I had a bit of a physical melt-down where I got chills and started shaking uncontrollably. I went to bed, but felt like I didn't rest well, and I woke up too early this morning. I tried to go back to sleep, but after an hour or 2 without luck I got up and started working. I owed work 4 hours due to doctors appointments. 

After work, Mom took me to pick my kitty up from the vet's, and when we got home I was so exhausted that I tried to sleep again. No luck! I was supposed to go to see my friend again tonight, just to hang out at the house, but I'm too tired and I don't feel good.

On top of the exhaustion I have a headache, bit of sore throat and feel generally achy. Guess I overdid it last night...I wouldn't think that just sitting and talking would take so much out of me! We were out for a total of 4 hours. If I can't handle 4 hours of just sitting and talking, I'm not sure I can handle going in to the office either!