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

[Lkaibel]

Started with the Radicava Tuesday, first home infusion today.

Brian's leg strength seems to be taking a leap down this week. Yesterday, his legs failed on the way to the car with his walker and his friend had to help him up and in (not a fall, he lowered himself to the ground. Then last night, unable to get out of his recliner, and this morning another chair. He can still walk with walker when he is up.

Brian has progressed in a slow, subtle way - now this. It is hard to know if this has something to do with the Radicava (weakness in the legs is a documented side effect, ironically!), his lack of sleep and more activity these past few days, or if it "just" progression. We will contact his Doctor and see how it goes the next few days. We will have some big changes ahead if Brian is losing his legs super fast. His hands are also weakening more, but he can still feed himself.

Ironic to be accepted into a drug trial AND starting Radicava and going downhill fast all at once.

 

[Rush714]

I was diagnosed in September, approved for Radicava last week and just started my initial 14 day cycle yesterday. I had my second dose this morning, and haven't had any real side effects to speak of. I did get dizzy and nauseated today around 3 hours after my dose, but I can't be certain that was the reason.

I plan on visiting the infusion centers all 14 days during this first cycle.

 

[Lkaibel]

For those on Radicava, I wanted to note that as it turns out Brian was likely having a reaction to the steroid he was being infused with along with the drug to prevent allergic reaction ( oh the irony!) AND it turns out he has appendicitis. Both contributed heavily to his loss of function and all over weakness this week. It is highly unlikely it was the Radicava.

Time will tell more, but at this point Radicava seems blameless.

 

[Wilson2009]

I completed the first fourteen-day cycle today. No noticeable side effects occurred. As previously mentioned two bags failed to allow the spike to be inserted correctly and leaked, one at the VA infusion clinic and one at home. I found out from the pharmacy that other VA locations have had the same issue with the bags. No feedback yet on any suspected cause or preventive measures other than to insert the spike dead center.

 

[Tedstehr]

I had to buy different brands of 100 ml bags due to a shortage. On one make the spike fit in no problem, but the nurse struggled to get the spike in the other make. He is a 250lb body builder so struggle for him might be an understatement for you and me! Try a different brand if you can.

I think I have confused the issue here. I am infusing the Japanese version - known as Radicut. It comes in vials that are injected into 100 ml saline bags. In the US you use Radicava that is already mixed in with the saline in bags. So you couldn’t switch makes of bags. I suppose other brands of IV tubing could help.

 

[kellykago]

I had one bag that also leaked. My husband said it felt crunchy when he spiked it and we couldn't get it to stop leaking. Pharmacy had to send another bag.

 

[Lkaibel]

Leaving Radicava both over cost issues ( we were told by Clinic it would be fully covered, now 2500 copay per infusion round) and some concerns that some of what we experienced last week may have been side effects. Radicava is really too untested to be sure on that.

I wish others great success with it, but will not discuss Radi again the on this or any other Forum after being accused of upsetting people with our experiences on another site

Again, wishing everyone well.

 

[Tedstehr]

Leaving Radicava both over cost issues ( we were told by Clinic it would be fully covered, now 2500 copay per infusion round) and some concerns that some of what we experienced last week may have been side effects. Radicava is really too untested to be sure on that.

I wish others great success with it, but will not discuss Radi again the on this or any other Forum after being accused of upsetting people with our experiences on another site

Again, wishing everyone well.

Lenore,

You did not upset me. I thought the purpose of sites like these was to share in triumph and pain, and to learn from one another's experiences. Blind hope without considering the facts is not a good strategy. And if Brian's symptoms had been caused by Radicava (which you clearly stated was not) I would want to know to be on the lookout.

i love the insight and knowledge you add to this forum Lenore. I hope you know the feedback you got is not universal!

 

[Lkaibel]

At this point if I wanted to pass along any critical info on Radicava it would be make sure everyone is 100% clear on insurance coverage. Medicare and supplemental seem to be making it up as they go along, and I still think billing departments are not understanding it.

As to side effects, read the information that is out that so far and how the studies were done and make up your own mind. My own perspective is not enough research was done on this drug to say definitively what is and is not a side effect. That being said, ALS is a terminal condition and the possibility of slowing progression may be plenty of good reason to try it for you.

As with all medication, I suggest educating yourself and making an informed choice. I agree with Ted, blind hope is not a good strategy. Particularly in the economics of pharmacology in the United States.

 

[Bestfriends14]

My PALS and I are currently in Japan and have finished 5 treatments so far. He has had no side effects, either good or bad. We met the doctor who did the research on Radicava and he is the most kind and humble man.

The clinic is in a tiny space and his work with Radicava seems not to be money driven, but more helpful. It costs us fifty times less than it would to pay for treatment South of the border from Canada, and the doctor does not seem interested in raising his clinic prices.

As this is an ALS clinic that we attend, we see the local patients getting their daily infusions. Since it was released in 2015 in Japan, it appears that this is the go to drug for ALS individuals. They keep track of progression via the ALSFRS (or however you say it) to see the efficacy of the medication.

 

[diagnosed2016]

We are on our 5th day. No nausea but the threatments are leaving hubby exhausted and feeling weak. I cannot find any info on whether this side effect lessens on off weeks or if this continues the entire time?
He is just getting over a bad and scary resp infection last week so that may also be playing a part

 

[Tedstehr]

Seems like it is more likely the respiratory recovery. Just a guess mind you, but those can be a bear to recover from.

 

[Miav123]

We are on our 5th day. No nausea but the threatments are leaving hubby exhausted and feeling weak. I cannot find any info on whether this side effect lessens on off weeks or if this continues the entire time?
He is just getting over a bad and scary resp infection last week so that may also be playing a part

Unforunately my dad has felt the same way since starting the infusions. He seems out of it and at times confused...not like him at all. I'm not sure if it is just an extension of his ALS or a side effect at this point.

 

[Nikki J]

Are those who are having the exhaustion / weak issues getting home infusions? One of my reasons for not doing this was having to go to the infusion center and fearing the stress/ fatigue damage would outweigh any benefit

 

[diagnosed2016]

Nikki, we are doing home infusions. Hubby is much better- we are pretty sure that he was just wiped out from being sick and exhausted from little sleep because he was coughing so much. He's had 3 nights now of good sleep and it's made a world of difference. He does say that he feels "weird" during the treatment, but the exhaustion he felt at the first infusions is gone and now he's pretty good. Home infusions are pretty easy on him- he can sit in his recliner and relax while I do them. If we didn't have the ability to do home treatments I'm not sure how we would swing it.