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.
Showing posts with label antibiotics. Show all posts
Showing posts with label antibiotics. Show all posts
Monday, July 4, 2011
Saturday, March 26, 2011
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.
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.
Tuesday, November 16, 2010
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!
Friday, February 12, 2010
Sunday, January 10, 2010
Childhood and Early Adolescence
I was born with health problems. For the first 2 weeks of my life my parents had to walk the floor with me and hold me upright so I could breathe. Despite repeated trips to the emergency room and an early diagnosis of asthma, I learned to walk and talk at an accelerated pace, and although I was small for my age, I seemed to develop normally.
I had all of the normal childhood vaccinations, as well as a bad case of chicken pox at the age of 5. I also have eczema, so the combination was brutal. Doctors prescribed antibiotics repeatedly for various respiratory infections, but I don't know what type of respiratory infections they were, or how severe.
When I was 7, my family moved to a cold climate, and I had my first major pneumonia during that very first winter. Mom came to wake me up one morning because I'd slept later than usual, and I didn't wake up. In fact, I was completely non-responsive, and she quickly determined that I wasn't just asleep. She and my dad rushed me to the hospital, and the emergency room staff pumped antibiotics into me by IV. They determined that it was most likely a case of walking pneumonia since no one had known that I was even sick. My white cell count was higher than a leukemia patient's, so they knew that I had a raging infection. After that illness, the doctors told my parents that I was going to keep getting pneumonia until I could go 2 years without needing antibiotics, and that even catching a cold would make me going into pneumonia.
I was referred to an Ear Nose and Throat (ENT) specialist at a children's hospital, and she did a second round of allergy tests, tested me for Cystic Fibrosis, and also tried to determine whether the convulsions that I'd gone into during my pneumonia were related to epilepsy. They confirmed that I had major allergies, but nothing else came of the tests. They changed my asthma and eczema medications, and the doctor told my parents (in front of me, because she was angry) that if I continued having such severe asthma attacks and repeated pneumonias that by the age of 30 I'd have the heart and lungs of a 90 year old woman. Because of that, I grew up thinking that I would die before I reached the age of 30, and had a certain fatalism that you don't expect to see in children.
As it turned out, going 2 years without needing antibiotics has been virtually impossible. There were some years where I'd have pneumonia along with ear infections and throat infections multiple times in one year. I would estimate that by the time I was 15 years old I'd had pneumonia over 20 times, and been hospitalized for 2 consecutive years if you put each stay back-to-back!
I had all of the normal childhood vaccinations, as well as a bad case of chicken pox at the age of 5. I also have eczema, so the combination was brutal. Doctors prescribed antibiotics repeatedly for various respiratory infections, but I don't know what type of respiratory infections they were, or how severe.
When I was 7, my family moved to a cold climate, and I had my first major pneumonia during that very first winter. Mom came to wake me up one morning because I'd slept later than usual, and I didn't wake up. In fact, I was completely non-responsive, and she quickly determined that I wasn't just asleep. She and my dad rushed me to the hospital, and the emergency room staff pumped antibiotics into me by IV. They determined that it was most likely a case of walking pneumonia since no one had known that I was even sick. My white cell count was higher than a leukemia patient's, so they knew that I had a raging infection. After that illness, the doctors told my parents that I was going to keep getting pneumonia until I could go 2 years without needing antibiotics, and that even catching a cold would make me going into pneumonia.
I was referred to an Ear Nose and Throat (ENT) specialist at a children's hospital, and she did a second round of allergy tests, tested me for Cystic Fibrosis, and also tried to determine whether the convulsions that I'd gone into during my pneumonia were related to epilepsy. They confirmed that I had major allergies, but nothing else came of the tests. They changed my asthma and eczema medications, and the doctor told my parents (in front of me, because she was angry) that if I continued having such severe asthma attacks and repeated pneumonias that by the age of 30 I'd have the heart and lungs of a 90 year old woman. Because of that, I grew up thinking that I would die before I reached the age of 30, and had a certain fatalism that you don't expect to see in children.
As it turned out, going 2 years without needing antibiotics has been virtually impossible. There were some years where I'd have pneumonia along with ear infections and throat infections multiple times in one year. I would estimate that by the time I was 15 years old I'd had pneumonia over 20 times, and been hospitalized for 2 consecutive years if you put each stay back-to-back!
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