Patient Comments: Alpha 1 Antitrypsin Deficiency - Effective Treatments

Question:

What kinds of treatment have you received for your disease caused by an alpha-1 antitrypsin deficiency? Submit Your Comment

Comment from: maggiemoouniverse, 45-54 Female (Patient) Published: November 14

Our sister passed away with Alpha 1 related panniculitis and was also lung affected and eventually liver and systemically eaten away before her death in 2000. She was not treated with augmentation therapy. I was tested and diagnosed with severe type PiZZ and lung affected. In 2013 there is still no therapy available for severely affected patients. All there is available are inhalers, nebulizer therapy and a once off lung rehabilitation course and home oxygen therapy.

Comment from: CherokeeShar1, 55-64 Female (Patient) Published: February 28

My brother passed away unexpectedly from alpha-1 antitrypsin deficiency with severe lung issues and liver cirrhosis in 2017. We found out he had it, through autopsy verified through testing. My family had a lot of emphysema cases… mostly young age, and some nonsmokers with no environmental exposures. I also have liver disease with severe non-allergic COPD-like asthma. My alpha-1 antitrypsin deficiency blood test was negative, but my brother's doctors advised I should have liver biopsy anyway to be sure.

Comment from: ReCliner, 45-54 Female (Patient) Published: February 07

I was diagnosed 5 years ago after gallbladder surgery showed scarring on my liver. I am not a big drinker. Blood test showed alpha-1 antitrypsin deficiency. I had routine ultrasounds and blood work for a few years. My husband became ill and I quit, going to care for him. In October 17, bloodwork and ultrasound showed 4.5 cm mass. I had chemo-embolization in January. If successful I go on transplant list. My sister’s alpha-1 antitrypsin deficiency affects her lungs she get weekly infusions. My nephew has just been diagnosed with alpha 1 liver disease.

Comment from: Never smoked., 55-64 Male (Patient) Published: July 28

I was diagnosed with alpha-1 antitrypsin deficiency around 2004, and I was living a mile and 1/2 from a refinery all my life. Long time bronchial issues till late 30s. Kept it under control with Advair, bronchodilator, nebulizer, etc. Just found out today I may have alpha-1 antitrypsin deficiency. I don't know anything at all except what I just read. I needed to take a blood test and walked out, bad feeling. For 2 months now the flare up has been much worse than usual. I have shortness of breath to where I start to black out trying to inhale nebulizer. I was diagnosed with severe asthma on top of it. Last week has been scary. Wow. The doctor called me twice and I missed his call.

Comment from: tank66, 65-74 Male (Patient) Published: September 13

I was told I should get this treatment once a week for alpha-1 antitrypsin deficiency and then was told it is USD 14000 a week. It shocked me and I forgot to ask if it is covered by Medicare.

Comment from: personanongrata, 45-54 Male (Patient) Published: April 12

I was misdiagnosed my whole life. By the time a doctor diagnosed correctly that it was alpha-1 antitrypsin deficiency, it was too late. I lie here tonight and do not believe I will make it through the night. Navigating through the health care system was a nightmare and fruitless. I was not able to acquire the proper treatment, and lie here at my daughter’s home waiting for the light to go out.

Comment from: janquito, 45-54 Female (Patient) Published: November 18

I was diagnosed with this just this year. I was being tested because my liver enzymes kept being so high. I'm not sure if the doctor looked for this or if it just came to someone's attention. Lately I'd been having some breathing issues, the doctor said was allergy/physical asthma. I have an inhaler. I've been having more and more issues with being short of breath and use my inhaler more and more. It is hard to catch a deep breath. I'm not sure what's going to happen down the road but I certainly do not want a breathing problem.

Comment from: 45-54 Female (Patient) Published: November 18

I just started 4 weeks ago with weekly infusion treatment of Prolastin c.

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