How many like myself have chosen not to even try to get the Radicava shots

[DetroitLakesMN]

If I'm using the right words for that newest shots that came out last year 2017 that they give you to try to stop or slow down the progression of ALS.

$150,000 a year or something.

I didn't even pursue it or look into it carefully after the I got diagnosed with ALS in November 2017 at the Mayo Clinic Rochester.

I think I was in shock and denial.

I'm wondering now if I made a huge mistake then and if I am still making a huge mistake now not looking into it or attempting to take these shots and try to help myself.

 

[Nikki J]

I did not think it was worth it for me but I am slow progressing and have had symptoms for a long time- the opposite of the benefit group in the study. The treatment burden seemed to outweigh any possible benefit for ME. Everyone is different.

It is an IV treatment not a shot

You should talk to your doctor. That does not obligate you to anything

There is also a NEALS webinar coming up. The person who is scheduled to discuss the pros and cons is my nurse practitioner. https://www.neals.org/for-people-wi...f-clinical-trial-data-and-drug-considerations

 

[KimT]

I didn't think the reduction of quality of life and time involved warranted the risk. I also have a friend who started the infusions and they wore her out to where she is now bedridden.

 

[KarenNWendyn]

So far I have opted against Radicava. I’ve yet to be convinced that the benefits are worth the hassle. It’s a personal decision. No need to feel guilty one way or the other. I’ll watch the webinar though.

 

[grounded]

I chose not to try it. My progression is slow & the Doc noted that there was no one in the trial like me. If it were administered orally, I'd give it a shot, but for now the hassle isn't worth it for me.

 

[Vincent]

Not approved in Canada, it strikes me as a slightly better rilutek. That and I'm too far in for the benefit group.
Vincent

 

[Wilson2009]

I have had five cycles so far with no adverse side effects noted. During the fourteen days off of the fourth cycle, I thought that I had less energy, but I have not noticed that during this fourteen day off period.

I have not found the infusions to be a hassle or that they cost me time or take away from anything I want to do. Of course, this is probably because we require no assistance in doing the infusions or PICC maintenance. We do everything at home and my wife, who was trained by the VA, gives all the infusions and does the PICC maintenance, save the weekly bandage change.

Unfortunately, I have no idea if it is making a difference as I was already considered a 'slow progressor'.

 

[mpnatx]

I chose not to try it. My progression is slow & the Doc noted that there was no one in the trial like me. If it were administered orally, I'd give it a shot, but for now the hassle isn't worth it for me.

The Dr told me the same. I go to the clinic next month. Maybe their tune changed.

 

[Smith2026]

Good evening to all...just a quick question as you all have stated that you have a slow progressing form of als...what is considered slow?

 

[GregK]

...what is considered slow [progressing ALS]?

Not dead within 2-5 years.

 

[Nikki J]

It is a comparative term so I don’t think there is a firm definition. After 4 years of leg onset I can still walk and my frs is over 40. I think I am very slow progression. I know I am extremely lucky

 

[Smith2026]

Nikki...that's good my dad was diagnosed in November 2016, and he is really slow using his walker, having a lot of trouble getting out of chairs. his is leg onset as well...drop foot and I'm sure it started in 2011. it wasn't until my mom took ill in late 2013, passed 2014 that I noticed some strange things happening...since November I can not believe how quickly he has gone down hill, although i don't think he has trouble swallowing yet..i can not see any signs so that is one positive thing...he was given a prescription for ridizone? i can't remember how to spell it) but he refused...

 

[Statius@]

Like Wilson2009 I get the infusions at home, administered by my wife (using a PICC) trained by a VA contractor. Like many here I've questioned the trade-off between potential and uncertain benefit and the time and psychic burden of doing the infusions and what it might take away from the pleasures of living still available to us. We still hope to travel some and the schedule complicates planning, especially for cruises or long trips. On the other hand, the process takes only about 70-80 minutes and we often do our daily meditation during the drip (or read or doze). As a moderately slow progressor (my ALSFRS has stayed around 36-37 for about 2 years) I'm not sure how I'll know what benefit, if any, it is having.

Ed