Infusion Frustration

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ChesterB

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Joined
Nov 19, 2019
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26
Reason
PALS
Diagnosis
10/2019
Country
US
State
NC
City
Bessemer City
Anyone have problems finding a local hospital willing to infuse Radicava? I’ve been waiting nearly two months to get started and three local hospitals have refused to take me on. One hospital that operates an infusion center told us that they “couldn’t get “ the drug. That seems odd. Now I am going to have to drive 40 miles each way in rush hour traffic to get to the only infusion center that does do Radicava. Home infusion is not a good option for me. I just can’t understand why hospitals are unwilling to help out.
 
That's frustrating for sure. I'm no longer doing Radicava, but I did 6 cycles of it back when it first became available. I had my first cycle in the hospital infusion center before switching to home infusions. I was one of only TWO patients doing Radicava at this major teaching hospital. The ALS clinic was at the same hospital and THEY coordinated everything for ordering the drug etc, not the infusion center. A few days into my infusion cycle the other Radicava patient they had switched to home infusion and then I was the only one.

It may be that you're the only patient at your local hospital who is trying to do Radicava there and they aren't willing to figure out ordering the drug and educating infusion nurses on the protocol with such low demand for it. I'm not saying they're justified, just guessing it's something like that.
 
Why did you stop the Radicava, Kristina?
 
Sam, I did 6 cycles and during that time my progression sped up. I did not feel it was helping me and worried it was making me worse. It also gave me migraines.

I think it may truly benefit a particular subset of PALS but I am not one of them.
 
Have you scheduled surgery for your port implant? I'm also a pioneer of sorts here in this little shire. Everything was coordinated through my local neurologist. I would start there. I haven't had any issues, and have been on it for about two years. Your nuro, should make phone calls and get everything straightened out. Keep positive.
 
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Chester, I'll share my experience for what it is worth. Diagnosed in August 2016. Learned ofEdaravone, the generic name for Radicava, from Team Gleason. Went to Japan to get it, as it was before FDA approval. Started with home infusions after being trained by nurses. Due to some mistakes borne from ignorance my port got infected. That treatment led to infusion antibiotics at Bioscript. Once FDA approved Radicava, I talked to them and ultimately with the aid of some great nurse advocates there, I ultimately got my Radicava from Bioscript and got my port accessed there for weekly home infusion. Bioscript does do infusions on sight so it's worth checking out. I think they are a national company. Good luck and I hope this helps. I did two and a half years ofRadicava before stopping a few months ago .
 
I don't know how to ask why you (Jay Q) stopped the radacava . Trying to be tactful. Without sounding intrusive, nosey, and the word that means you would have said why if you would've wanted to and you obviously didn't want to. I hope your doing well.
 
DeeDee, don't feel bad, I don't mind sharing. When I went to Japan the doctor there talked in terms of an 18 month regimen. I went a year beyond that. While I think it slowed my progression, no way to know for sure, after the 30 months my progression had gotten to the point that I was no longer walking and I was on the Trilogy basically full time. So, the hassle was no longer worth it(daily infusion for two weeks at a time). Wasn't sure there was much more progression to delay. By contrast, I still take Riluzole given the ease of administratio.

In sum, I felt I did what I could to try and take advantage, but given my progression I felt it was time to stop.
 
Anyone have problems finding a local hospital willing to infuse Radicava? I’ve been waiting nearly two months to get started and three local hospitals have refused to take me on. One hospital that operates an infusion center told us that they “couldn’t get “ the drug. That seems odd. Now I am going to have to drive 40 miles each way in rush hour traffic to get to the only infusion center that does do Radicava. Home infusion is not a good option for me. I just can’t understand why hospitals are unwilling to help out.

Just as my care team got my infusion treatment set up, I saw my doctor and he’s concerned that my symptoms haven’t changed. My muscle tone is still good and my respiratory function is completely normal. He is thinking that I might have Kennedy’s Disease, so now I’m waiting for them genetic test results.
 
Sam, I did 6 cycles and during that time my progression sped up. I did not feel it was helping me and worried it was making me worse. It also gave me migraines.

I think it may truly benefit a particular subset of PALS but I am not one of them.
Exactly Same here and I stopped it as well because I felt worse and got worse and worried I made a mistake. Headaches and Extremely tired and drained
 
Wow, these experiences you are reporting about Radicava are definitely a cautionary tale. I was considering going into the clinical trial for the oral route, but now I'm rethinking. It's so confusing - one of my doctors says it prolongs life 30%, and another says they really don't have good data on it and therefore may not be worth the hassle, at least for the infusion route. Does anyone know if there are studies/reports of pALS who have gone on this and reported their experiences? It would be nice to see macro data on this topic, if it exists.
 
Hi, Chester. Really sorry you are having trouble finding a place to do the infusions. That kind of drive would be a huge problem.
Couple thoughts:
- As Eric mentioned, there's a trial going for oral administration. If you're interested in that route, maybe your neuro can hook you up and avoid the whole infusion issue.
- You said that home infusion isn't a good option for you. If help is the issue, you might see if your insurance will cover Visiting Nurse support to administer the infusions. (The pharmacy which supports infusion therapy for my insurance company ships me the drug and supplies each month.)
- If you are able find an option that works to get the infusions, I suggest you consider getting a port implanted. It only took me one cycle using a peripheral IV to realize that would not work long-term. (N.B. - if there are others successfully infusing Radicava using a peripheral IV, I am not denying your experience - it just did not work for me.)
Best,
Bill
 
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