Have you started Radicava? Use this thread to discuss experiences with receiving radi

[nightowl]

I was recently forwarded to this post by Nikki (THANK YOU SO MUCH!).
I am attempting to get this medication for my father. Here in Houston, ALS clinic that my dad is being seen at is at Methodist Hospital by Dr Appel. Will have to call and ask what our options are.

Thank you all,

 

[Bestfriends14]

Starting treatment October 30th. Will let everyone know how it goes.

 

[kellykago]

I am on day 7 of the infusion and am doing well. I have had no adverse side effects. I did the first 5 in fusions in the clinic and the last 2 at home. I have a picc line and we are doing remaining infusions at home from now on. I will have bloodwork done after each cycle to monitor. My husband thinks my speech is improved but I don't notice a difference e.

 

[Chief T]

Just dropping you a note:

Started Radicava on the 19th.
Day 1-minor headache, increased spasms Day 2-no headache, spasms Day3- No headache, no increase spasms, feel stronger. Grip Test on 21 Sept 17-at PT 123rt; 122left
; Pinch Test 28rt/26lft. Previous Grip Test 12 Sep 17:123rt;126lft; Pinch Test: 29rt;26lft

3 Oct 17: just completed initial 14 day treatment. Starting medicine free for 14 days. No serious adverse reactions noted, minor stomach upset when being administered, I found eating crackers while infusing helps. Did notice muscle spasms in areas I didnt previous have, but are minor. Also, feel fatigued normally during the 2nd bag of infusion but ok an hour after. Noticed overall, I feel better and have more strength it seems. Will continue to update. Had a port put in that will make infusions easier, also doing the infusions at home. Medication is sent to home. Hope this helps. I have an appointment with neurologist this week. One last thing, noticed I wake up with a dry mouth, not sure if its the medication.

 

[Chief T]

I am on day 7 of the infusion and am doing well. I have had no adverse side effects. I did the first 5 in fusions in the clinic and the last 2 at home. I have a picc line and we are doing remaining infusions at home from now on. I will have bloodwork done after each cycle to monitor. My husband thinks my speech is improved but I don't notice a difference e.

Did you notice an increase in muscle spasms by chance? Or feeling fatigued during treatment.

 

[SanDiegoSue]

Tomorrow (Oct. 4) I get my last Radicava infusion of the first 14. I thought after day 4 that I had more energy, but it didn't last. If anything, I've been feeling more tired and weak. Speech is about the same - slurred, whiney, raspy, hard to understand. No progression in last 2 weeks in hands, arms or legs. So, maybe that's good. I'll let you know how it goes.
Sue

 

[GregK]

No progression (or slower progression rather) is all you can expect.

Were you hoping for more?

 

[Tedstehr]

No progression (or slower progression rather) is all you can expect.

Were you hoping for more?

Greg,

Terri Bishop from Nova Scotia regained the use of her hand after a few infusions in Japan. It sounds like that is unlikely to happen for most people but one can always hope!

 

[KarenNWendyn]

Motor neuron cell death is characterized by neuroinflammation followed by laying down of scar tissue (gliosis). Once there is scar tissue, those neurons are dead and aren't coming back. So, as Greg said, you can hope for slowing (or perhaps stopping) of disease progression, but not reversal of what's already lost. Transient improvement could occur, I suppose, in neurons that are inflamed rather than scarred. Then the muscles that are atrophied would have to regain their innervation and regrow. So even if a few muscles "come back to life", I'd expect it would take some time.

 

[Cab6711]

I am starting on the 17th!

 

[aretha]

husband started Brigatinib Injections last week and it seems to be causing him breathing issues.
Is that normal?

 

[Tedstehr]

Motor neuron cell death is characterized by neuroinflammation followed by laying down of scar tissue (gliosis). Once there is scar tissue, those neurons are dead and aren't coming back. So, as Greg said, you can hope for slowing (or perhaps stopping) of disease progression, but not reversal of what's already lost. Transient improvement could occur, I suppose, in neurons that are inflamed rather than scarred. Then the muscles that are atrophied would have to regain their innervation and regrow. So even if a few muscles "come back to life", I'd expect it would take some time.

You are the Queen of Clarity Karen! Thanks so much for this explanation. I am guessing no one knows how long a neuron can remain inflamed without scar tissue?

 

[KarenNWendyn]

It's all a guess. I'd venture to say that earlier in the disease course, inflammation predominates over scarring. As the disease progresses, scarring takes over. This is what we see in inflammatory diseases affecting other organ systems (e.g. Lungs, kidneys). The brain is a different beast altogether, so neural inflammation may be somewhat different.

 

[SanDiegoSue]

I second the thanks to Karen.
I know the drug is only expected to slow disease progression, but I couldn't help but hope my speech would improve. No such luck. But, if this drug gives me more time with walking legs and somewhat usable hands, I'll be very happy. Must say, though, the infusions are a drag. I hope they come up with an oral form.
Sue

 

[Lkaibel]

Brian is getting his port Monday and will have two impatient infusions and then have them at home. I'll let everyone know how it goes.