Radicava

Mon

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Hi, my dad is looking to start Radicava. He was diagnosed in early May. The neuro was doing blood work and making sure he qualifies for covered treatment. Id like to hear from those on Radicava and what their side effects were. I hear many have hypersensitivity issues to it and im concerned about gait issues. Also does a port stay in the arm all the time? Or is it removed during the 14 day off period. Thanks, all replies appreciated.
 

Nikki J

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As well as any replies do a site search by title only for radicava. Lots of threads.

there are 3 ways to administer. Regular iv which has to be changed frequently. Not an option for many of us as our veins will not tolerate it. There is also a PiCC line which can stay in longer but you would have the capped line outside your body for as long as you have it. A lot of PALS do ports which are internal and usually the access is a place in the upper chest. once you have it it should last the duration
 

wmilo

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I was diagnosed 10/2017 and started Radicava 12/2017. Had a port inserted after the first Radicava infusion, which went very easily for me. Early on I had some occasional very mild headaches, not every infusion. For the past few years, I have experienced no side effects. Others have reported significant side effects and your dad won't know until he tries it.

In hindsight I can see that I had started to experience ALS symptoms a couple of years before my diagnosis, and would self-categorize myself as "slow progression". Would my progression have been faster without Radicava? I don't think anyone can say definitely, but I have continued to take it and am grateful for it.
 

sassy

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My husband also had a port inserted after his first infusion. He has not had any side effects and I've done his transfusions for three years. We also don't know if it's the Radicava which has enabled him to progress slowly or if it's his variant. The port is in his chest and a nurse comes to put the needle in and five days later I remove it. He does the treatment twice a month for a total of 10 days. For example-- nurse comes on Monday and inserts needle-- we do treatments Monday, Tuesday, Wednesday, Thursday and Friday. I remove needle on Friday. Nurse comes back on Monday and inserts needle again and then we repeat - Monday - Friday. Then he has two weeks off with no treatments. Our insurance is through my employer and home infusions are covered. At one time anyone who had Medicare as there primary insurance had to have the treatment done at an infusion center. This may have changed....
 

Mon

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Thank you everyone for your replies. I just assumed a port was in the arm for some reason. This may be a silly question, but can you go into a pool or body of water with a port? .His ALS is in his arms, shoulder onset and he can get in and out of a pool ok and slowly( legs and back are strong) We think it a good therapy to help maintain range of motion.
I agree, there is no way of knowing what side effects will be until you try. Its my understanding the first 3 infusions will be done at clinic which is part if hospital (Sunnybrook) and if all goes well, the rest can be done at home.
 

affected

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I can't answer any of your questions from experience, but we have a terrific search function at the top towards the right.
Here is a link from me searching radicava for you.
It just may help give you lots of information you are looking for from past conversations, and even some of the members that might have experience to answer questions for you.
We have sure come a long way since the very first PALS started this, and some of our members have been on it a long time and can hopefully help more.
As far as I know, when the needle is not in the port, he will be able to swim.

 
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lisa g

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I've been taking radicava for over one year. Did it slow progression? No one knows for sure but I will say that after 2 1/2 years I'm still walking. To answer your question, yes as long as the port is deacessed you can go in the pool.
 

Mon

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Glad to hear he can still do his therapy in water. Very good news. Happy to hear it may be contributing to the fact you are still walking. Appreciate the replies. Thank you.
 

Wilson2009

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I was on Radicava for a little over two years. I stopped because of bruising and quality of life In the end, even the slightest bump would cause a large bruise. The quality of life issue was that I was just simply tired of planning my life around infusions.

I would strongly suggest the first cycle be done through an IV line to be certain he can tolerate the drug. Once he is okay with the infusions, then go to the port

When the port is accessed, you can protect the area from water intrusion using a product like AquaGuard, which covers the sight and seals to the skin. While I never went in a pool with an AquaGuard shield on, I showered every day and never had water get under the AquaGuard cover.
 

Mon

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Thank you for sharing. My dad also bruises easily. Currently weaning off predisone and that alone caused thin skin and bruising. He has been on it for months because the failed ivig caused a negative immune response that triggered Erythrodermic psoriasis. Its been a nightmare. Im really concerned about iv meds based on what happened with ivig.
That sounds alot like how my dad will be, not wanting to plan life around infusions. I do know he wants to try a treatment but he wont be happy about how you receive it and how time consuming it could be. So much to consider with such harsh circumstances.
 

lisa g

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Mon, I won't kid you it is time consuming. Some people have their infusions done at home which makes it easier. With my insurance I need to go to an infusion center to be 100% covered. Between driving time to and from the center and the actual infusion time it takes about 3 hours a day for 10 days. If he can get them covered at home he would be happier.
 

Mon

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Our clinic mentioned option of home after inital 3 days. Dad has appointment this week at clinic for details. Fingers crossed it works out with insurance.
 

This is me

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Isn't it frustrating? They make someone who is disabled drive to a clinic 10 days a month. Mine is about 3 hours of my day also. Is your infusion center open on weekends and holidays?
 

preacherman

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Hi,
I was diagnosed April 2016 and I started radicava I think December 2017... might have years or dates off but it's been a while.
Not really any side effects except that I seem to have developed a lot of allergies to odd things... adhesives, ointments, things like that.
I had a picc line initially which was miserable. Got a port by may. It quit working about a year later and I got a new one which has not had any problem.
I do home infusions.. they are kind of a nuisance but if they are working what is a bit of hassle?
Is it working?
5 and a half years post diagnosis and: My wife and I went to Tucson for the winter last year and had to get the prescription switched to the VA in Tucson. The neurologist who would have to sign off wanted to see me so I had an appointment.... after the exam she questioned my diagnosis because she wasn't convinced I even had ALS, let alone for 5 years.
I can still stand, walk, jump, stand on one foot, stand on my toes, use all limbs and digits....
Neurologist ordered a new batch of tests, blood work etc which all came back clean so she ordered a new EMG study.
Brief summary of EMG: fabrilation potentials noted at all levels examined. Fibrillations and positive sharp waves noted throughout.
Motor units were enlarged with polyphasics. Poor recruitment and poor progression of recruitment. Patient did have intermittent fasiculations throughout.
Medical impression: Patient appeared to have a very advanced amyotrophic lateral sclerosis..

That could go into a whole new discussion but my thought is that it has been working.
Where would I be right now without it?
Who knows, but I know where I am at with it.
 

lisa g

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That's amazing preacherman hoping it continues for you. I also can do most things but slower. I agree if it's working I'll put up with the inconvenience.

I split my time between Florida and Ohio. In Florida the infusion center is open 7 days a week and holidays in Ohio it's only open Monday-Friday. The other difference is in Florida I'm charged 3x's the amount for each infusion than Ohio. I still get covered 100%. When I inquired I was told that in Florida the infusion center is attached to the hospital and in Ohio it's a separate building not attached therfore in Florida I'm being charged hospital pricing. Crazy right?
 
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