[Martino Caretto]

I am a PALS, 69 years old, male, diagnosed in June 2016, spinal onset, on Radicava since October 2016. On assisted mechanical ventilator and with PEG feeding tube since Feb 2019. Wheelchair bound since 2017.On Radicava since October 2016. Having just overtaken the 3 years mark since diagnosis and considering my present condition, I would say iRadicava has probably helped: however I do not know what the outcome would have been if I had not been on Radicava.

[Martino Caretto]

In my case it took just over 12 months. I am 69 years old, the diagnosis was in June 2017: first symptoms appeared in early 2016, two falls, difficulty in lifting weights, pain in the lower back, general loss of strength in the muscles. Visits with general practitioner, MRI twice with back pain specialist, sessions with chiropractor and finally visit with neurologist followed by EMG and subsequent ALS diagnosis in June2017.

[Martino Caretto]

I have been on Edaravone for almost 3 years, basically a couple of months after diagnosis. If you look at the progress as measured with the ALSFRS you would probably conclude that my rate of progression is somewhat slow: however as we do not know what the progression would have been without Edaravone in my case I cannot really say if and how much Edaravone has helped. A study is being run in the US which could help us understand this issue, hopefully!

[Martino Caretto]

Hi.

I have been on Ibudilast for about 6 months.I am 69 years old, diagnosed in June 2017, wheelchair bound, on ventilator and with PEG tube. I get it from Holland at the price mentioned in the question. Reliable service. Difficult to say if and how much helpful. I am also on Radicava, same conclusion, but I thought I would give a chance to anything that might help.

[Martino Caretto]

Diagnosed in June 17: on Radicava since October 17. On mechanical ventilation and with PEG since Feb 19. Wheelchair bound since end 18.Infusions administered at home through port, no issues, rather easy. Not in a position to say if progression has been impacted by Radicava. Also on Riluzole since 10/17.

 

[Martino Caretto]

Well, the best hope would be to slow down progress, so I do not see an improvement and I cannot say what the progress would have been without it.
However progress on ALSFR scale has been 2 points in about 8 months.
I am also on Radicava and Riluzole.

In a nutshell, I cannot really answer your question with certitude. The neurologist recommended it and I complyed…
I would try anything that might help…
Bye for now.

[Martino Caretto]

Hi. I am a PALS, onset in 2016,diagnosed in 17, now with feeding tube and on ventilator, male, 69 years old. I was ” prescribed ” Ibudilast about 5 months ago: I order it through ” The social medwork ” a Dutch company: they source it in Japan and have it delivered to my front door. Your doctor could write a letter to them stating that he/she recommends it for you. They will then help you ordering it.