Bad Reaction...but to what?

I did my infusion yesterday and finished about 11:00 PM. Today I felt ok other than exhaustion and a headache...until about 2 hours ago (8:00) PM. Suddenly I started swelling all over my body and having breathing trouble. I'm afraid it's from the treatment, but hoping it was just a food reaction rather than to the treatment. I took 2 Benadryl and my breathing has improved somewhat, but I'm still swollen enough that my fingers feel stiff, and still a bit short of breath. I know I probably should do the epi-pen and 911 thing, but I'm afraid that the epi-pen will trigger seizures. I keep monitoring my breathing with my peak flow meter and even with the feeling of shortness of breath, I'm blowing over 400 on it (which is good). My tongue isn't swollen either.

I didn't eat anything that unusual today, except some home-made oatmeal/coconut/chocolate cookies that my mom put some milk in. I'm allergic to milk, but have never had this kind of reaction to it before. That was the most recent thing that I ate before the reaction, and the reaction came on very suddenly. I also had some spaghetti with fresh basil on it from my mom's plant, and while that's not something I have all the time, it's still frequent enough that I didn't think twice about it. I had that about an hour before I noticed the reaction.

The only other time I've had a reaction like this to something was to shellfish, and it was similar except this time I don't feel like my tongue's swollen. I'm wondering whether there's shellfish in the cat food.

Will post more later...

False Alarm?

Sunday, 11/19/10 2:00 PM

So...I ended up not going to the hospital, but took an additional 2 Benadryl and was finally able to sleep despite the fact that I was really scared. I feel a lot better this morning, and I realized that the Prednisone could have made me puffy instead of it having been an anaphylactic-type reaction. I know, I'm an idiot for not going to the hospital because they could have at least confirmed whether it was anaphylaxis or not, but I was afraid to go because I was scared I'd catch something. Silly huh?

I took my blood pressure when I was going through all of that and it was 140/89 which is very high for me, but it made me more comfortable to sleep because one of the danger signs of anaphylaxis is low blood pressure in addition to the other signs. It made me realize that maybe something else was going on and I calmed down. This morning I asked my mom whether I'd been puffy earlier in the day before I went to get her and she said my face was definitely puffy. That's another reason I think it was the prednisone. Also, I never felt like my throat or my tongue were swollen, and I think the prednisone explains that. 

I feel like a fool for getting so scared and putting my mom through hours of worry, but it was scary and I've had the swelling thing before with my tongue and throat swollen from an allergic reaction. I should have remembered that prednisone makes my face look puffy too though and calmed down when I realized my tongue and throat weren't swollen.

I do have a rash where the Tagaderm patches were, and that's something new. I took picture to show the doctors if they want to see them. 

So confusing...too many variables...

Update...

Monday, 12/20/2010 10:00 AM

I tried to call my doctor but they are out of the office until January...I guess that's the drawback of a teaching hospital. When I couldn't reach anyone there I called Accredo and spoke to both the head nurse and the pharmacist. They were both of the opinion that it probably was the prednisone causing the swelling because I didn't have a swollen throat or tongue. The pharmacist suggested that I take 20 mg the day of my infusion and then try either taking 10 mg the next day and 10 the day after that, or 20 the day of and 20 the next day. She said she's noticed a pattern to me having breathing trouble about 24 hours after the infusion and believes it to be a backlash reaction from the prednisone suppressing everything. She said missing a few weeks of my infusion wouldn't kill me if I'd rather wait to talk to my doctor. I truly think that's what it was though. 

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. 

Visit to the Pulmonologist

I went to the pulmonologist today and mentioned that I feel like I'm starting to come down with something. He asked me what my symptoms are, and I told him I feel a bit congested in my chest, I'm spitting up yellow/brownish phlegm in the morning, I have an urge to cough but am not coughing much yet, and I'm exhausted. Based on those symptoms and the fact that I need to avoid getting any more lung damage,  he prescribed a 10-day course of antibiotics for me. Unfortunately, it's one of those antibiotics that requires avoidance of all calcium and magnesium, so I have to quit all vitamins for 10 days because the warning on the label says "Do not take antacids Iron, or Vitamins/Mineral Supplements within 8 hours before and 4 hours after this medicine". I expect I'll be really tired without my vitamins!