As an alpha-1 antitrypsin deficiency (AATD) patient, being on augmentation therapy has already made me realize how bad my lungs had become in a short amount of time. They say you don’t know what you have until it’s gone. There may have been side effects, but they outweighed the benefits of being able to breathe easier and feel more energetic.
When I started augmentation therapy, my throat and lungs, and energy improved noticeably. I didn’t realize how much pain and energy it was taking me just to breathe. I love having the energy to do things that is a little better than before, though there are side effects.
Usually, this therapy is used for people who have emphysema or another declining lung function condition that is directly caused by AATD. One usually has to be a nonsmoker before they are allowed to have this medication. I have a healthy lifestyle, don’t smoke or drink, so my declining lung function was, as far as we know, not because of health choices I had made.
I received IV therapy made up of alpha-1 that was extracted from healthy plasma (also called Glassia). It is then combined with a saline solution and injected via an IV, usually every week to help those patients whose lung function declined to a certain point.
Read more about AATD therapies
I didn’t know how the Glassia would affect me but I knew preserving lung function needed to be a top priority as there were no environmental reasons for why my lungs were so bad. I had never smoked or drank, but my lungs were declining rapidly.
I had good reasons for having this medication, so I knew whatever side effects came that it would be worth going through. I have headaches on a normal basis, so I was told this might be a greater problem for me with Glassia. I take Tylenol before the procedure and have not had any headaches other than the usual.
If anything, I have fewer headaches, but everyone is different in how they respond to the medication and I know many people on this therapy who have headaches afterward. I also hear these headaches are mild and do not last long.
I am often tired after the infusion, and I am tired the rest of the day. This may be one of the most commonly reported issues with this therapy, which would make sense for the simple reason that the patient is getting injected with 3 or more grams of protein intravenously, perhaps side effects of the Benadryl I take with it.
One potential side effect is frequent infections, such as colds and perhaps a virus, although plasma donors were screened for such health issues before donating. I have noticed I have a sore throat more often than usual since starting the infusions.
There is the potential for an allergic reaction at any time. This is why I always take Benadryl as a precaution, as directed by my doctor and the pharmacy that supplies my medication. There is also an epinephrine pen and an IV bag prepared.
Augmentation therapy is very interesting to watch. I check my blood pressure at different times during the therapy and my nurse checks my other vitals too. Everything is so closely monitored and I make sure I have plans canceled for the rest of the day of the infusion.
I have experienced dizziness and nausea, and I have heard that other side effects also may include, shortness of breath, chest discomfort, flare-ups of COPD, and the things I discussed above.
If there is one thing I have learned about being sick, it’s that I have to redefine “normal” in terms of remembering to not compare my life to others’ lives. I can’t let the illness define my life.
The amount of anxiety this medication helps me avoid is significant, knowing something was horribly wrong with my lungs all those months ago. Therefore, any side effect of this medication is worth going through because having the protection I need to physically stand up to the issues in life is worth a lot to me.
I want to keep “standing up” to this illness and endure whatever alpha-1 proteinase inhibitor throws at me because it is my friend. I am working 2 jobs to pay the bills, at least for now.
I realize not everyone is in that position, and I definitely realize I am at an advantage. Many people never received the care they needed for whatever reason and they are now suffering for it. Sometimes this is unavoidable.
In the right circumstances, augmentation therapy for alpha-1 patients is a true gift.