Radicava question

[lisa g]

My neurologist has suggested that I start Radicava. I do not have a port so I'm wondering if anyone gets the infusions without having a port? Do they leave a IV line in for 14 days?

 

[blitzc]

Lisa, a port is reccommended for long term usage. A picc line would suffice until a port can be available. Here is a nice overview: https://www.cpc.mednet.ucla.edu/sit...her131112/Day1/Transition/LinesTubesPorts.pdf

I started Day 1-3 with a peripheral line but my veins collapsed so had to have picc inserted for the duration of days 4-10. The I had port placement surgery for the next round of Radicava. Port much easier to maintain.

Call/text me for more info. ☺

 

[Wilson2009]

Lisa, the preferred alternative to a PORT is a peripherally inserted central catheter (PICC) line. Wikipedia has a great description of what it entails.

I started my Radicava using a PICC line. After 10 months I switched to a PORT. I finally stopped the infusions after 22 cycles. The PICC line was significantly more of a hassle than the port. Once a week, you must have the dressing changed on the PICC whether you are in an infusion cycle or not. It must be wrapped during a shower or bath to keep water out.

The port has no reoccurring maintenance. It is accessed at the beginning of the cycle and de-accessed at the end of the cycle. Since the port is under the skin, you only cover the port for a shower/bath when it is accessed.

I just saw Cathy's post. Agree 100% the port is much easier. Send me a PM if you want more information.

 

[lisa g]

I agree with having a port put in but at this time with the virus that isn't going to happen. Thanks for the replys

 

[blitzc]

Just a quick follow-up...a picc line has to be placed in a hospital as well. It only takes 20 minutes or so and then you go home.

 

[Nikki J]

start with a peripheral line if at all possible - both because of the viral issues but also in case you have a bad reaction. going through even a picc just to find out wouldn’t be worth it. If your veins can do one cycle that will buy time to see how things are with the virus. Is the radicava already insurance aporoved?

 

[lisa g]

Neuro was working on it. Shouldn't be a problem, I have Medicare and also carried my insurance from Cigna when I retired from the government.
I'm starting physical therapy on Tuesday, I was lucky to find a therapist that specializes in MS and ALS patients.

 

[affected]

Make sure that physio is only going to try to keep joints and circulation moving. If there is any talk of helping you 'stay strong' or 'regain muscles' be very wary. You may have found one who really does understand and if so this will be fantastic for your quality of life.
Are you going to be seeing the physio remotely?

 

[lisa g]

Yes Tillie I will be going to there office. They are only letting one patient in at a time. Tuesday will only be for an evaluation and to put the together a plan. She said that she would give me things I could do at home until it is safe to have sessions. Right now I am still fully functional I walk 2 miles a day and exercise in our pool. My husband massages my legs every night and does ROM. I'm not sure how much more they can give me that I'm doing already.

 

[affected]

Lisa, my Chris was still fully functional and walking, but his hands were very weak, and his arms weakening.
One physio tried to get him to do a pushup as she was going to 'keep his arms and shoulders strong'. He got up on his arms then face planted and nearly broke his nose.
So just be wary of what approach they take is all. Keeping things loose and moving is the goal, not strength.

 

[lisa g]

I will definitely be on guard. Right now I'm trying to navigate how to setup Radicava. This is all very confusing.

 

[Dee Dee 0617]

Hi Lisa, I just wanted to add be kind to yourself and your body. The double edged sword here is exercise has become our enemy. In the beginning I would try to keep up my routine. I was in dance for 18 years, so I've used those basic exercises throughout my life. I was so tired, it took me days, I was worse for the wear. Can't even recall how many times I had fallen. I have been taking Radacava infusions for over 2-years the first round I went to the hospital, once they were certain I was not having any adverse reactions, they scheduled the port surgery. God bless you kiddo

 

[diagnosed2016]

A pic line can stay in place for a long with proper care. My husband had his for a year and a half and it was still in place.

 

[Bestfriends14]

My husband has a port for his Radicava infusions and has had it for 2.5 years. Not really any issues with it and it has made infusions much easier. I would suggest the port, as the picc line can have many issues and more maintenance than the port.

 

[sassy]

My husband also has a port and it's been problem free. No maintenance at all.