Heather, Jesus, and Toya, actual patients
Diagnosed with alpha-1 and ready to talk about treatment?
How to start the conversation with your doctor:
It’s normal to have questions about your alpha₁-antitrypsin deficiency diagnosis and possible treatment options. What should you expect? How can you advocate for yourself? And what questions do you need to ask? This guide can help you prepare for your appointment.
Ready to talk with your doctor?
Keep reading to learn more, or download your PROLASTIN-C LIQUID conversation guide now.
Why ask your doctor about treatment for alpha-1?
Only your doctor can help you decide on the right treatment for you. A personalized plan is crucial for managing alpha-1 and making sure it fits seamlessly into your life.
Effective communication with your healthcare provider is key to finding the right treatment together:
Figuring out the right alpha-1 treatment plan for you will require a conversation between you and your doctor. Feel free to ask questions and share any information you think is important.
Always be clear and direct with your doctor, even if some topics may feel a little embarrassing or uncomfortable. Your answers will help your doctor understand your current condition to develop a treatment plan that works best for your unique needs.
You can share your health goals, discuss how your lifestyle could affect your treatment, and even talk about how to work treatment into your schedule and where to receive it.
Questions to consider for your next appointment:
Not every doctor is an expert in alpha-1. Your primary care physician may need to refer you to other healthcare professionals who specialize in alpha-1 care for diagnosis and treatment, like pulmonologists and genetic counselors. Your primary care physician may also play a role in the day-to-day management of your alpha-1.
Your doctor will assess your health condition and symptoms to determine the best course of action. They may want to perform tests to assess lung function during the appointment. But because alpha-1 is an underdiagnosed condition, they may not know much about alpha-1 yet. You may be learning about alpha-1 treatment at the same time. Educate yourself as much as possible, and ask questions about the things you don’t understand. If you need to connect with a specialist, you can find an alpha-1 doctor near you.
This is a time to reflect on your symptoms and what has been happening since your last doctor appointment. Have your symptoms changed, or do you have new symptoms? You may find it helpful to keep a diary to track symptoms leading up to your appointment.
Let your doctor know what you hope to gain from treatment. What kinds of things do you want to focus on? Do you need help managing symptoms? When your healthcare provider knows your goals, they can make a plan that works better to help you reach them. This is another good reason to track your symptoms with a simple diary.
Every alpha is unique, with different experiences and different lifestyles. It’s easier to follow a plan that complements your routine, your choices, and your schedule. Make a list of the concerns you may have about following a treatment plan, and share them with your doctor.
How alphas can become advocates for themselves when seeking treatment for alpha-1:
Alpha-1 is a complex genetic condition, and the more you understand it,* the more you can work with your doctor to help manage it.
Alphas have strong advocacy and support organizations, like the Alpha-1 Foundation* and AlphaNet®*. AlphaNet provides access to AlphaNet Coordinators, people with alpha-1 who are trained to offer care management to other alphas.
Alphas need help from other alphas. Look for opportunities to raise awareness and show support*.
Just the facts—treating alpha-1:
Augmentation therapy is receiving the needed missing protein from donated human plasma. This protein infusion contains a concentrated form of alpha-1 antitrypsin, which helps increase levels of this protein in the blood and lungs. This therapy is specifically developed for people with alpha-1 antitrypsin deficiency who have emphysema. Talk to your doctor to learn more and explore whether it may be an option for you.
Trusted by patients with alpha-1 and their doctors for more than 35 years, PROLASTIN-C LIQUID is the #1 prescribed augmentation therapy.1 PROLASTIN-C LIQUID is proven to effectively raise alpha₁ antitrypsin protein levels in people with alpha-1.2
*This website is provided as a resource only and does not constitute an endorsement by Grifols of any particular content. Grifols does not review or control the content of non-Grifols websites.
Making your plan:
When it comes to your treatment plan, it's a partnership between you and your doctor. Be an active participant in your treatment. Keep your doctor informed so they can make the best decisions with you.
- Remember, every alpha-1 treatment plan is different because everyone experiences the disease differently, with different symptoms and different rates of lung function decline
- Your treatment plan will likely include more than just medication. You may also need to make lifestyle changes to help reduce your symptoms and better manage your condition
- Sticking to your plan and carefully following your doctor’s instructions, week by week, is the key to managing alpha-1. Work with your doctor so the plan works with your lifestyle. This will help treatment become a part of your routine more easily
Ready to start the conversation with your doctor?
There are many questions to consider. Download a useful conversation guide to help prepare for your next appointment.
Important Safety Information
PROLASTIN®-C LIQUID is an alpha1-proteinase inhibitor (human) (alpha1-PI) indicated for chronic augmentation and maintenance therapy in adults with clinical evidence of emphysema due to severe hereditary deficiency of alpha1-PI (alpha1-antitrypsin deficiency).
Limitations of Use
- The effect of augmentation therapy with any alpha1-PI, including PROLASTIN-C LIQUID, on pulmonary exacerbations and on the progression of emphysema in alpha1-PI deficiency has not been conclusively demonstrated in randomized, controlled clinical trials
- Clinical data demonstrating the long-term effects of chronic augmentation or maintenance therapy with PROLASTIN-C LIQUID are not available
- PROLASTIN-C LIQUID is not indicated as therapy for lung disease in patients in whom severe alpha1-PI deficiency has not been established
PROLASTIN-C LIQUID is contraindicated in immunoglobulin A (IgA)-deficient patients with antibodies against IgA or patients with a history of anaphylaxis or other severe systemic reaction to alpha1-PI products.
Hypersensitivity reactions, including anaphylaxis, may occur. Monitor vital signs and observe the patient carefully throughout the infusion. If hypersensitivity symptoms occur, promptly stop PROLASTIN-C LIQUID infusion and begin appropriate therapy.
Because PROLASTIN-C LIQUID is made from human plasma, it may carry a risk of transmitting infectious agents, eg, viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent. This also applies to unknown or emerging viruses and other pathogens.
The most common adverse reactions during PROLASTIN-C LIQUID clinical trials in >5% of subjects were diarrhea and fatigue, each of which occurred in 2 subjects (6%).
Please see full Prescribing Information for PROLASTIN-C LIQUID.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch, or call 1-800-FDA-1088.
References
- Data on file, Grifols.
- PROLASTIN®-C LIQUID (alpha1-proteinase inhibitor [human]) Prescribing Information. Grifols