As a patient with alpha-1 antitrypsin deficiency (AATD), I have augmentation therapy to stop the genetically influenced decline in my lung health. Infusions are essentially symptom-free for me, and I generally look forward to them because I know how much I need them.
I have had infusions for over a year and then had a lapse in my insurance coverage before I could resume them. When I started getting them again, I had to re-adjust because I had forgotten I often felt nauseous when I first started. This time, the nausea is worse.
It wasn’t something I remembered as being a big part of my experience, but it has been a lot harder to deal with this time. I remember the last time I used ginger chews to help me, but I eventually stopped needing them. I’m sure I will eventually stop feeling nauseous, but ginger tea and peppermint has not been very helpful in the meantime.
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I’ve never been able to figure out why the nausea was actually happening. I figured it must have been stress or dehydration. This time around, though, I am much less stressed and am keeping hydrated. My guess is that I just need to give my body time.
Read more about treatment options for AATD
I’ve noticed that I seem to feel worse when I’m moving, like if I am walking or in a car (on the days following the infusions). I have found that the homeopathic “nux vomica” tablets help temporarily while driving, and I do have some relief when resting.
To date, I haven’t been able to find something that’s helped as much as a very strong ginger tablet. However, I also noticed that I bled more and more easily when I used those a lot. I’m not sure if it has that effect on others, but I was taking them often and they were very strong.
I may ask my doctor for nausea medicine, as nausea is a recognized side effect of the drug in my augmentation therapy. My infusions are Glassia®, although I don’t know of many people who experience the same thing. I know that sometimes when I am exercising, I’ll feel nauseous, and drinking water usually helps, as well as rest.
So, it is a manageable side effect, and pretty much the only side effect of the infusions for me besides general tiredness. I remember that after I had been given the infusions for a few months, it felt like they weren’t a big deal. I didn’t worry about getting poked, and I understood how easy it was going to be.
I have to say I’m surprised that such an invasive type of therapy has so few side effects. I think the benefits of having a longer lifespan and better quality of life and lung health are worth it. I know what it’s like having a hard time breathing and I want to be able to avoid that as much as possible.
Read more about AATD testing
I don’t deal with nausea every day; just some days. I’ve heard of one patient who gets acid reflux with infusions if they are done too quickly. Slowing them down helps a lot. My infusions are already done slowly, but if they weren’t, that might be something to look at.
Nausea is something I am already fairly accustomed to from years of having migraines, and it may be that the nausea is a form of migraine. If that were the case, I could use the migraine medicine I have and that might help.
Most people I know on augmentation therapy for AATD have little to no side effects, maybe just some tiredness (easily managed with coffee or caffeine) or a headache. Sometimes, I have a headache if the medicine goes in too fast. But that’s rare.
Often, when you read the insert on a pharmaceutical drug, the side effect list is super long, but it’s not like that with infusion medicine for patients with AATD. In fact, many weeks go by when I don’t notice any side effects at all.
I’m not complaining. I just think it’s significant to point out that the nausea since I re-started therapy was so much worse. Maybe the day will come when we learn more about this disease and discover a cure.
