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
I stumbled across your blog at the right time. I have met no other CVID patients and feel very isolated and misunderstood in that regard, and today was especially hard....I've just been told today that I have had a (rare) hemolytic reaction to Hizentra---but SIX WEEKS AGO, discovered just after the peak, and well into recovery when the hematologist learned of it, due to inter-office communication errors. But I finally saw the hematologist today after waiting 6 weeks to find out that what my PCP thought my be a specimen-handling error was actually a real result (life-threatening destruction of red blood cells due to a reaction to the immunoglobulins) and my hematologist demanded that I stop immunoglobulin therapy. Like you, it's official a mystery as to when I got CVID, but your history is much like mine; I was always sick with respiratory, mono, kidney infections, underweight and big rings under my eyes, always the one to get pneumonia on top of the usual childhood stuff, strep throat a jillion times, etc....and YES I can be badly injured, even horribly bruised, and bare swell! I can be very sick and have a high fever---or none at all, especially these last few years. I was started on Hizentra last summer, wen through months of miserable side effectsa, then recently leveled out, got better. About 3 mos ago really saw a change for the good in my mental clarity, fatigue, pain, arthritis, etc. It changed my life...and now this....I have a slight hope it may be unrelated to the IG, just coincidental, as a virus can doi the same thing, though rarely; the hemo was sarcastic and challenging when I expressed that hope--as though I was stupid or have a death wish...which is how I'd been talked to when I first learned I had CVID and balked at taking treatments!...tests and immunologist appt pending. But I wish my coworkers could read your blog--hell! even just my family! Please start a page for idiotic hurtful things people say, even after they've been told enough medical detail to get it, "If you're getting all those side effects, why not just stop?" and "Well, the IV would take up less of your time, right?" and "I'll bet you're glad you may never have to take it again"(after this reaction).
ReplyDeleteHello, I'm sorry it's taken me so long to respond. I was going through a lot and wasn't on my blog much for quite awhile. I'm sorry for your feelings of isolation. There are some good support groups on Facebook. One of them is a closed group, which means that no one but the people in the group can see what you post. Do you take prophylactic antibiotics instead of infusions? My immunologist stopped my treatments due to my bad reactions and I now take 250 mg of Ceftin daily to help keep bugs from taking hold of my system.
ReplyDeleteI hope you are doing well