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. 

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!

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.

Second day after Hizentra

I woke up with a headache again this morning, and I realized that one reason I've been having such a rough time with this first SubQ treatment is that I didn't take it seriously like I do the IVIG. I had so ingrained myself with the idea that there are fewer side effects from it that I didn't even think to hydrate in advance! I realize now that I need to treat SubQ with more respect, just like I did my IVIG treatments. I need to hydrate the day before, avoid caffeine the day of, and hydrate they day of (and after too).

I have felt very tired all day with a strong desire to sleep. I wonder how long it takes to feel the increased energy that SubQ is supposed to provide? I just took it easy and stayed in bed all day. I hope that I'll be able to work tomorrow, and that I don't wake up with the headache.

Aside from the headache and fatigue, the swelling has gone down on my belly significantly. I almost look like myself again! The knots are about 1/3 the size they were after the infusion on Friday. I used to wonder what people meant when they talked about "knots" in regards to SubQ, and now I know! They are large welts (about 3" in diameter) that are hard to the touch, and painful too. They literally feel like a hard, knotted-up muscle, except they are more painful than that. I don't know whether they are caused by the fluid from the infusion building up under the skin, or if they are actually a histamine reaction. I need to do more research on that and find out.

Later the same day...
I feel like I might be sick. The question is, is it CVID, a reaction to the Hizentra, or am I actually getting sick? My legs feel like rubber and I have a "sick taste" in my throat.

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.

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.

First Day After Completion of First IVIG Treatment

Last night after the treatment I had a lot of trembling, shortness of breath, lower back pain and headache. I took medications to deal with those symptoms and finally felt well enough to lie down (can't lie down when I can't breathe). This morning I woke up and felt achy all over. I just wanted to cry from it. I've felt weak and wiped out all day, and have probably spent too much time sitting up at my computer. Time to rest.

My doctor called and said now that I've started treatments I can stop taking the prophylactic antibiotics and it's ok to even be around sick people. I think I might wait awhile to spend much time around sick people, but it's nice to know that I don't have to be cooped up and wear masks everywhere I go now! :) She also said to just continue treating the symptoms from the treatment and to not worry about them

Now I'll rest... ;)