Recently Diagnosed

[Kilroy13]

Good day
I have joined today having been diagnosed ALS 4 weeks ago. I am already on Riluzole and have asked my Neurologist to start me on IV Edaravone (Radicava in USA/Canada) and should begin in January 23.I wish to hear from members who have personal/close experience of Edaravone infusions and what to expect during the course in terms of functional status. Currently i am in good status, active, working and driving. Appreciate all information.

 

[Nikki J]

Hi sorry you have to be here. Happy you are so far doing well. Long may it continue

while you are waiting for direct replies try putting radicava in the search box and check title. You will have to scroll past threads related to the oral version but there is a lot of discussion about iv radicava and some of those people aren’t here to answer you now

 

[Kilroy13]

Thank you

 

[Tomswife]

Wishing you wellness and comfort.

 

[Mana]

Sorry to welcome you here. You will find understanding and support for your journey. Wishing you well

 

[lisa g]

Sorry to have to welcome you here. As far as the Radicava, were you given a choice of IV infusion or taking the oral form (Radicava ORS)? I was on the infusion form for 2 1/2 years and have recently transitioned to the oral form. The oral form is much more convenient taking 5 minutes to administer versus the IV version taking approximately 1 1/2 hours from start to finish. If you go the IV route go through at least one cycle having it administered by IV in your arm to make sure that you don't have any side effects then I would have a port placed which will save your veins from continuous access for 10 days. I personally had no side effects from the drug. Good luck

 

[lgelb]

Very sorry to hear. Let us know how we can help.

I agree that if the oral form is available where you are, that would be the form to try first.

Best,
Laurie

 

[Buglaw]

So sorry that you are here. I have nothing to offer in terms of IV advice, but will say I’ve had no side effects from oral Radicava and it takes about 45 seconds to administer (40 of those seconds are finding the bottle and shaking it for 30 seconds as instructed).

 

[Kilroy13]

Many Thanks for responses and kind words.This forum is a wonderful place and my deepest gratitude to all of you spending valuable time for benefit of others.
Radicava in any form is not approved for use in Australia by TGA. A special application has to be made and then imported. The Oral dose costs about A$30000 for a 10 day course.Generic IV is affordable- so am going to try that.Importing from Japan and should have in 4 weeks.
Apparently I have the spinal onset variety, all 4 limbs wasting and losing strength and getting fatigued.Trying to perform some exercise every day but don't think that can counter the gradual decline-guess it will only help to keep range of mobility.Happy to be guided to threads to hear personal experiences of those who have tried IV and how one can assess if it is working or not.

 

[Doing My Best]

Hi Kilroy23, I'm pretty new here myself. Although my husband was diagnosed almost 3 years ago, I only recently found this forum. My husband also had limb onset, and retained good speech, swallowing, and breathing until recently when those things have started to become more problematic.

In any case, regarding your comment about exercise - yes, your goal is range of motion, as it's not possible to counter the decline in strength. Our ALS Clinic told us as soon as he was diagnosed that Steve should not do any kind of strengthening exercises, only flexibility. This was tough as he was kind of a gym rat and his natural response to a weakening muscle was to exercise to strengthen it. But in the case of ALS, as I understand it, this could actually hasten progression. It's not your muscles that are the problem, it's your motor neurons, and if you push your muscles to do things the neurons can't make them do, the effort is just wearing and damaging. That's a lay person paraphrasing of what the doctor told us, so I can't vouch for scientific precision, but the main message was clear, to focus on conserving energy and maintaining flexibility.

I"ll be interested to hear your experience with the IV Radicava. Hope it goes well.

 

[affected]

@Doing My Best that is a spot on laymans explanation

 

[MJT]

Kilroy, I hope you can find joy every day.