Is intravenous immunoglobulin (ivig) helpfull ?

[win4t4]

Hello All

I'm Winata. Maybe you wouldn't understand completely about what I say because of my bad English. This forum have been my source of information because my father had ALS and I live in Indonesia. A country which still have little information about ALS, many of neurologist didn't know about this disease.

My father have been diagnosed with this disease in 2008 but the first symtom occured in 2006. He already make up his mind not to use ventilator permanently. But 2 days ago this condition gone bad and we take him to hospital. Immediately the doctor put him in ICU and put ventilator on him. Now his carbon dioxide level already back to normal and then

Now he placed in ICU (started 2 days ago) and using ventilator, doctor said that his carbon dioxide level is good and the Pulmo doctor said the we need to consult to a neurologist because they want to stop the ventilator and think that this "breathing muscle" is very weak and the neurologist will give a medicine to strengthen his "breathing muscle". We think that is a good idea. After the neurologist come, he prescribe intravenous immunoglobulin (ivig), which is very expensive and after searching the internet I found that this medicine is used for other disease GBS (Guillain Barre Syndrome).

Now I'm confused, have any of you used "ivig". Is this medicine helpful ? My father didn't have medical insurance and if this medicine is helpful, we will try using it, but if don't, this is too expensive for us to just trying.

Winata

 

[Alyoop]

Sadly IVIG is of no use for ALS. It is used for other neurological conditions with some effect although the actual mechanism of how it works is not very wl understood. Sorry for the bad news

Aly

 

[manwithaplan]

i am sorry for you and your father. i was diagnosed with mnd [als] last june but also given a course of ivig in case it was a neurological disease that mimics the symptoms of mnd in the early stages. sadly the ivig was of no help to me and i continue to get worse, especially my diaphragm for breathing. i use a ventilator or cpap machine with great success [non invasive ventilation] and still have a good quality of life for now. if your neurologist is certain it is mnd then ivig will not help in the short or long term. spending that money on a cpap and mask will help your father and may give him many months longer to live, if he agreed.
tony

 

[manwithaplan]

i am sorry for you and your father. i was diagnosed with mnd [als] last june but also given a course of ivig in case it was a neurological disease that mimics the symptoms of mnd in the early stages. sadly the ivig was of no help to me and i continue to get worse, especially my diaphragm for breathing. i use a ventilator or cpap machine with great success [non invasive ventilation] and still have a good quality of life for now. if your neurologist is certain it is mnd then ivig will not help in the short or long term. spending that money on a cpap and mask will help your father and may give him many months longer to live, if he agreed.
tony

 

[Miss]

I hate to be the bearer of bad news, but my husband was given a 5 day course of IVIg in February. It helped tremendously. He was given the same treatment in March with no affects. In April, the treatment stated a rapid fire decline, and he was firmly diagnosed with ALS. My husband's response in February was extremely rare for an ALS patient. It certainly was not worth the cost or the risk if you know that your father has ALS.

 

[Alyoop]

I did 6 months of IVIG before my final diagnosis. I developed a form of lupus from it. Neurologists often try it when they have no idea what's going on. It had a great placebo effect for a few weeks, which is common for most initial treatments when you are holding out hope for improvement, then bang it was obvious that it was really doing nothing.
Pity.

 

[Al]

Ivigg works if you have multi focal motor neuropathy. It doesn't help ALS.

al.

 

[CAHPAH]

My wife tested possitive for a suspected new biomarker for Multi Focal Motor Neuropathy last fall. They did one round of ivig and it made her so sick they refused to try again.

 

[win4t4]

Thanks all of you for your respon. yesterday I already ask the doctor about it and he says that my father condition is very bad, so either "do nothing" or "do everything".
So he just make that suggestion not based on anything just hope to be lucky

Winata

 

[abbas child]

Winata, I'm so very sorry your father is in this condition. I wanted to give you a hug from across the world.
Ann

 

[manwithaplan]

you can never have too many hugs, so add some from us too.
tony