My June '11 Appointment with the Immunologist

In June of 2011 I had an appointment with my immunologist. After much discussion, we decided to stop my IVIG infusions (at least temporarily) due to the fact that they were so negatively impacting my quality of life. Even after switching to Gammagard S/D as a weekly sub-Q treatment, I would still lose 2 days every week recuperating from my infusions. I was working full-time and switched my schedule to 10-hr days so I could have every Friday off to accommodate my 8-hr infusions. Every Saturday was spent in bed recuperating, and by Sunday I'd be able to walk around and have a less-intense headache than Saturday...basically every weekend sucked. To make matters worse, in order to keep the side effects minimal, I was on oral steroids the day of my infusion and the day after, and those steroids significantly impacted my mood and many aspects of my life. All-in-all, I was pretty miserable and often thought that I couldn't face a lifetime of infusions every week.

So we stopped the infusions and my Dr put me on daily prophylactic antibiotics. I now take 250 mg of Ceftin every day. It seems to work as well as the infusions at preventing infections. I'm getting sick at the same rate (about once a month), and when I'm not sick I feel pretty darn good (comparatively). I was afraid that my energy would drop off, but instead it's increased significantly. The combination being off of the Trileptal (which may have caused the CVID) and being off of my infusions also accommodates that nearly-impossible goal that will allow me to find out whether I was born with CVID or whether I had the right genetic makeup for Trileptal to trigger it in me. It will be good to know.

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!

Eleventh IVIG Treatment

So the Hizentra did not get approved in time for me to avoid going back for another infusion at the infusion center. Once again I outlined the rates and transitions that I wanted, and hope to avoid hassles with the nurses.

I'm having my infusion right now. It's going well, and I'm hoping that I'll have very few reactions since I'm on prednisone and they gave me my normal 50mg of Hydrocortisone as well. I'm keeping them to my usual rate of 25 for 30 minutes, 50 for 2 hours, and 75 til the end. With the additional steroids and low speed I really hope this one will be a good one! 

I arrived at or before 8:00 AM, and they took me in late...maybe nearly 9:00 before they started. I was finished and sitting on the bench waiting for mom to bring the car around by 5:15, so it was at least 8 hours long. As far as reactions go I'm doing well, but I think the 2 different kind of steroids are playing havoc with my emotions. I feel like a wreck and that everything I want and need completely conflicts with everything else I need and want. I took 1/2 a clonazepam when I got home and slept for awhile, and am now listening to soothing music and playing a game trying to be calm and let go of these awful steroid emotions in a healthy way.