It's Been Awhile...

I haven't added anything here for a long time, and for that I apologize. I guess I've been kind of scared about my treatments and got down in the dumps over it. Things have improved tremendously though, so I think it's about time I posted an update.

I kept having a lot of bad reactions to my treatments and my doctors kept telling me that if I didn't improve, they would have to take me off of all IgG therapy and put me on prophylactic antibiotics. What scared me about that is that I already have significant lung damage from all the infections I've had over the years and prophylactic antibiotics are less effective at treating CVID than IgG therapy. In addition, I tend to develop allergies to antibiotics quickly, and there are already many that I can't take either because they quit working for me, or I suddenly developed an allergy to them. I think we've finally come up with a solution that is working though, and my infusions have been going much better with fewer side effects.

I now take 20 mg of Prednisone the day of my treatment (an hour or so before I start it), and then another 20 mg of Prednisone the day after my treatment. If I take that and make sure to hydrate well, I tend to not have many reactions, and those that I do have are minor. The only exception to that seems to be if I forget to take my second Prednisone, then about 24 hours after the treatment I will start having trouble breathing.

The good news though is that I'm recovering more quickly from my infusions too. It used to be that I would feel exhausted and sick for the whole week between infusions, but now I feel weak the day after my treatment, but by the second day after, I feel pretty good! I've actually started looking forward to my infusions because I know they will help me feel better!

Today I forgot to take my second Prednisone, and so I'm having breathing trouble now. I was trying to figure out what was causing the chest tightness, then suddenly realized I hadn't taken the other pill. I need to make sure I put it in my pill container for the next day.

Infusion #10 Gammagard S/D

I did my 10th SubQ infusion with Gammagard S/D on Friday, and it was probably my best infusion to date! I'd spoken with the pharmacist at Accredo before I did my infusion, and she confirmed that the leaking during the previous infusion was likely caused by the cuts around the needle sites, so I decided to try the 6mm needles once more. I did the entire infusion myself and everything went very smoothly. No anxiety, no vomiting, no problems whatsoever! 

The next day I took only 10mg of Prednisone (as opposed to the 20 that I'd been taking previously) and I thought I was doing well, but then nearly 24 hours after the end of the infusion I suddenly started having severe breathing trouble. I took the additional 10mg and my inhalers. I had intermittent breathing trouble the rest of the weekend, so I don't think I'll experiment with that again any time soon.

The Prednisone does seem to be causing a lot of side effects with me that are very difficult to deal with. The worst of them is depression and anxiety. I'm really having a hard time dealing with my mood swings, and I'm very cranky. I Googled vitamin deficiencies caused by Prednisone, and found out that it causes a vitamin B-12 deficiency, so I'm going to increase my daily dose of B-12. I sincerely hope that it helps me deal with the emotional/mental toll that Prednisone takes on me. If you're interested in seeing what I found out about the effects of Prednisone, here's a link: http://www.copd-international.com/library/corticosteroids.htm

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.