Trouble getting radicava

lisatsmith13

New member
Joined
Jul 8, 2021
Messages
8
Reason
PALS
Diagnosis
06/2021
Country
US
State
AL
City
Cowarts
I am getting very anxious and frustrated that I have not been able to start Radicava yet. I know it is expensive, but Searchlight is working on my case too. My walking has gotten worse-I fell 2 times last week. A friend gave us a walker, which I may have to use soon, and we bought a wheelchair for longer distances. But I think if I had the Radicava that the progress of the disease would slow down. How long did it take others to get started on infusions?
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
413
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
It took me about 6 weeks from the neurologist writing the order to receiving my first infusion. Before my first infusion I had a pic line put in to make sure I had no reaction to the drug. After that I had a port placed for future infusions. Make sure to use the walker to prevent any future falls. Falls are not our friends.
 

Pauliguy

New member
Joined
Jun 18, 2021
Messages
8
Reason
PALS
Diagnosis
05/2021
Country
US
State
CA
City
Encinitas
Took me about 2 weeks, the hold up was getting a midline (like a picc) which took the 2 weeks to get the appointment. I am getting a port tomorrow.
 

SlithyToves

New member
Joined
Sep 5, 2021
Messages
3
Reason
PALS
Diagnosis
04/2020
Country
US
State
GA
I was diagnosed in April 2020. My first infusion didn’t happen until. That August
 

rnewton60

Member
Joined
Mar 1, 2021
Messages
26
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
I was diagnosed on 11/01/19 and didn't get started on Radicava until September of 2020. That was when it was prescribed for me and I had no difficulty getting the medication then or anytime since. They are very good about communications and hitting the dates they say then will. I have no complaints about them. The nursing staff that comes to my house to access the port has been much more challenging. Three times they have not be able to access my port and send me to the emergency room to "figure out what is wrong" There is nothing wrong, the emergency room always gets on the first try. I was supposed to start another round of infusion two days ago and the Nurse who can usually accessed already committed to coming two days ago. But I emailed her three days before to remind her. Never heard back from her and I was panicking about this after the on call nurse for their company told me they don't access ports on the weekend. I asked why. The answer came back that my 28 days cycle wasn't due to start up until Monday next week. I wrote back there math was wrong and showed I was supposed to start up on this past Friday. Before I could get a response to my dates, the big boss weigh in and said she was so sorry for the difficulty I was having and would personally make sure I was taking care on this Monday and would insure I would get the service I needed on the dates I need it on. So I am hopeful, but will believe it when I see it.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
306
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
I stopped taking Radicva 18 months ago or so but still need the port accessed once a month. I found nurses vary widely in their ability to hit the spot.

Ed
 

sassy

Active member
Joined
Apr 22, 2018
Messages
93
Reason
CALS
Diagnosis
02/2018
Country
US
State
RI
City
East Greenwich
My husband has been on Radicava for more than 2 years and the home care nurses have been great. No issues with accessing the port.
 
Top