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

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My pals has had 7 rounds of radicava. No adverse reaction but no obvious benefit. How do you judge benefit if you don’t know what the disease progression would have been without it? Only game in town right now.
 
You can’t. I decided not to take it, but my neurologist told me he advises his patients who take it that he will stop it if their respiratory function drops below a certain threshold.
 
I have completed two rounds of infusions with no side effects. I had a port put in during my first round of infusions. I dont plan to stop the radicava at all, ever. One will never know if it really slows progression rate if you stop. Betty
 
Today is the last day of round 9. Still no noticeable side effects. The only progression is the continued deterioration of my speech and swallowing. Seems like I have to repeat everything very slowly.

I agree with Betty. I will continue infusions forever.

Dave
 
My husband had a few doses last fall, got appendicitis, lost a lot strength and of course never regained it. Who even knows if it was related y the Radicava, but I’ll always wonder.
Progression got faster after all that.
 
Ive been on Radicava since September and my speech and chewing have declined more rapidly than the trajectory prior to Radicava. At my clinic appt Thurs, my Dr. was unsure if this could be due to the Radicava. She just can;t say for sure but she took two patients off of it who clearly progressed. She left the decision to me on whether or not to continue. I decided to stop and see if my progression slows down. They are also recommending a feeding tube, which I am having trouble accepting.....
 
Hi, Kelly. I'm very sorry that you have to face another of "those" decisions about a feeding tube.
You said that your doctor "...took two patients off of it [Radicava] who clearly progressed."
Did that mean their disease symptoms worsened while on Radicava or that their symptoms improved after stopping?
Sorry if I'm being dense but wasn't sure how you meant it.
Regards,
Bill
 
Kelly, I would appreciate clarity on Bill’s question too.
Thanks,
Ted
 
My pals has completed 7 rounds of Radicava. No adverse side effects but no noted improvement. Bulbar symptoms have increased (her ALS began with lower extremity weakness). Since it is billed as slowing progression it is impossible to know how much she would have progressed without it. The trips to the infusion center wear her out so we have requested in home infusion.
 
For most of my nine cycles I had a nurse use butterflies (winged infusions) to infuse the drug. Most of the time he hit the vein but there were a few misses. It was nice that when he pulled out the needle it was done. But he charged me at each visit so it was expensive and I had to schedule times with him. On my last cycle, my friends daughter put in a saline lock, which used to be known as a heparin lock. It was uncomfortable at night, but super easy to hook up and use. They used to only keep them in for 72 hours max, but now they leave them in until they get infected. I had a problem with mine but it would have lasted the whole ten days. Roger, that may be a solution for your pals. With minor training they can show you how to flush the line about three times a day and hook it up to the infusion set. It is not rocket surgery as some might say. Then you are completely on your own schedule and you don’t have to make any trips to the hospital. Or maybe one or two per infusion. Maybe the home care nurse could even put in the saline lock at your house.
Good luck!
 
friend's spouse has als. he used 30 vials, he has side effects. 90 vials left. friend went to jupiter and got back to get radicava, cause it is due to law, customs etc almost impossible to get it in my country. just rilutek. now he doesn't know what to do with it. it is not usual drug, so he even doesnt know anyone who knows somebody who has als, especially who uses radicava. he doesnt want to announce it. he will throw it or give it to me. i can use just this 90. can i get any benefit of this 90 vials? it is app 4 months... what is suggested minimum of radicava? i heard 7 months.
 
Jethro,

I don’t think there is a minimum. You start with 14 infusions the first month. Then 14 days without, followed by 10 days of infusions in a 14 period. Instead of 10 days in a row you can do five days, two days off and another five days.

If you feel you are receiving benefit you can try to get more. With ninety vials you can get 45 days of infusions.
 
My doctor felt that their ALS clearly had an increase in progression since being on radicava. She didn't mention if they slowed down again. I don't think there was enough time to access that. With me I've been extremely slow in progressing. Almost 3 years since first symptoms. Since being on radicava I am barely understandable. She couldn't say for sure it is the radicava with me so she gave me the opportunity to choose to stop or continue
 
My experience with Radicava has been almost identical to wmilo as posted on 4-18-2018. I was diagnosed in January 2018, taking Riluzole as well, and am on private insurance still.

I am on my 6th round right now with home infusions given by my husband or daughter, depending upon his working schedule. A home health care nurse comes on Day 1 to access the needle, Day 5 to change the needle and then my husband now pulls the needle from my port. I feel grateful for home infusions and not having to drive to a hospital or infusion center. For me that would mean 40 or more minutes each way. Plus the exhaustion of all the walking! I can actually watch TV, eat, nap, or get on the computer.

Here are a few experiences I have encountered:
1. First home health care company not experienced enough in med port usage. I ended up at the ER with an improperly placed needle and medication filling up my chest cavity. A new company was assigned then by my doctor/pharmacist (Option Care). No problems with the new company.

2. Port was difficult to get used to and very uncomfortable after initial placement surgery. Turning in bed is still somewhat troublesome when I have a needle accessed. It is much better now

3. As a woman, finding bras that don't rub or put pressure on either the port itself or the accessed needle has been a serious issue. Most of my bras don't work now. I have been switching to sports bras that are not too tight. Since my hand issues make it impossible to pull tight items, I needed looser ones. These loose fitting ones are hard to find. This is not something the surgeon or doctor told me about ahead of time or have helped with since. My home health nurses have been the most helpful with suggestions.

4. I use AquaGuard showering covers to cover my port and needle in the 7 in. square size. It fits perfectly over the bandage and works pretty well at keeping it dry without extra taping. This is provided with my medication and supplies-I just had to ask. I tried lots of other options including Press-N-Seal, but it was too much effort and taping.

5.. As for benefits, like wmilo, I have noticed a slight progression in my legs with stairs becoming ever more difficult. However, my family and friends have agreed completely with me that exhaustion and fatigue are greatly improved. I couldn't talk after 5 o'clock in the afternoon before starting the medication. I now can take short walks and have the willingness to be a participant in activities again. I still can't do things, but at least want to be involved instead of sitting out. Does that make sense? I don't mind driving to the store and making a quick trip inside or going out to dinner.

Thank you to everyone who has posted previously. It has been helpful to get advice and also understand how my experience compares to others.
 
Tedstehr - I was just wondering how you get Radicava as I see you live in BC, Canada? And do you believe it’s worked for you?
My Dad was just diagnosed and we also live in BC. Looking into all options now.
Thanks!
 
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