My doctor said that my copd was very bad for someone my age, so he took some blood test and said that I have (Alpha-1 antitrypsin deficiency) The way he explained it was that I do not have whatever it is in your body that produces enzymes. So I have no enzymes to fight off anything and that is also very hard on my lungs and can also damage the liver. So he is recommending that I take this infusion (shot) once a week for the rest of my life. The name of the infusion is (Prolastin), has anyone… read more
Cheryl, the infusions have made it possible for her to maintain her lung function in the 60s for over 30 years. She has two college age sons and visits them regularly, has a husband and home which she maintains and she works full-time, so while her life kind of revolves around the weekly infusions, it's also a very full and satisfying life. The point of the infusion is that it replaces the antitrypsin enzyme that the liver doesn't make or distribute properly. It's the lack of that enzyme that leads to the development of emphysema. The infusion stops that right in its tracks.
As for having a bad reaction, I'm certainly not saying that it couldn't happen, but I've never heard of it.
It sounds to me like you need a lot of education quickly. To answer your specific question, yes, if your doc has prescribed prolastin, you should take the infusion. It will replace the enzyme your liver doesn't make and your emphysema should stop right where it is. FYI, your body produces plenty of enzymes; it just doesn't produce the antitrypsin enzyme.
My suggestion is that you go to www.alpha-1.org That website has an incredible amount of information regarding Alpha-1, including a toll-free number where you can get advice and counsel from fellow patients. You need lots of education now. You also need to think about the implications of this diagnosis for your family, brothers, sisters and your children. This is a genetic disease, and they will need to be tested.
My daughter was born with Alpha-1 antitrysin defiencyzz. She has had 2 liver transplants and dare I say, she is doing well thank God. She is 40yrs old and produced 3 children and copes splendidly. I have copd Which means I am a carrier of Alpha-1. I do hope you are keeping well, please don't be disheartened as research is ongoing. Keep well, Maggie
Open this link for information about your question
http://www.webmd.com/drugs/2/drug-7997/prolasti...
I have now been on Prolastin C weekly infusions for over a year and now my insurance is refusing to pay for it. They are saying that it is not the preferred drug..Aralast is and wanting me to switch. I do not want to switch, I am doing great on Prolastin, I love my home nurse who I will lose, I will lose my coordinator who I have become very close to, and not to mention..I know nothing about this other drug!! Who's to say I won't have a reaction to it?!?! This insurance is through my husbands work which is very costly! I cant believe that they can cover this for over a year and now all the sudden just say we are not going to pay for it anymore, you have to switch to this drug and change your whole life around because we found it a little cheaper! Sorry..just had to rant a little bit. Hope everyone is having a nice day. Breath easy.