frus·tra·tion
frəˈstrāSH(ə)n/
nounnoun: frustration
the feeling of being upset or annoyed, especially because of inability to change or achieve something.
When I hear doctors (and parents) refusing Imukin treatment to people with FA who wants to see if it can help it makes me laugh AND cry! It is both hilarious and devastating. Imukin (interferon gamma/ actimmune) might not help everybody, it won’t cure us but many people who have tried it experienced relief of symptoms. There are no words in the world that can justify what kind of relief that is!
How can the risk of flu-like symptoms be a reason not to try Imukin when FA is as terrible as it is? I know many decition makers are scared that there are more serious side effects to Imukin. There might be but it is not common. What kind of medicine does not have serious side effects listed in their description?
The most common side effects to Imukin are flu-like symptoms. What is that:
Flu:
- fever
- headache
- chills
- myalgia
I would take flu-like symptoms every day for the rest of my life as long as my FA symptoms gets better. That said, I hardly feel any flu-like symptoms from taking Imukin anymore. The body adjusts.
This is why I think doctors should let FA patients try Imukin:
Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder.
- loss of coordination (ataxia) in the arms and legs
- fatigue – energy deprivation and muscle loss
- vision impairment, hearing loss, and slurred speech
- aggressive scoliosis (curvature of the spine)
- diabetes mellitus (insulin – dependent, in most cases)
- a serious heart condition (enlarged heart – hypertrophic cardiomyopathy)
Again, I am not saying that Imukin is a cure but it might make symptoms improve. Please do something! Something is better than nothing!
Just sayin…
There schoud be no question about it!!!!
E eu que sonho com este medicamento para meu filho e não tenho condições financeiras d comprar……frustração em dobro!!!!!!
And I dream about this medicine for my son and I’m not afford to buy d …… frustration double !!!!!!
Its very expensive to buy there is only fear to you costs covers state close 80% when i live I for example everything i need to buy
Amen.