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

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Sorry that you have migraines related to infusions.

I have had no problems .... I have complete 5 cycles and feel that it might be helping, since I have plateaued...
 
Kristina1, it is interesting you say that, a local PALS that recently started the Edaravone had no headaches on her 1st cycle, but just started her second cycle and advised that she too has been getting migraine headaches.
 
I had one cycle of Edaravone and am on week 2 of rest period. Perhaps just a coincidence, but have noticed a ramp up in decline, I feel noticeably weaker, my breathing is weaker. The edaravone did help with my cramping. I start cycle 2 a week from today. I do have an appointment coming up with my Respirologist to access my breathing.
 
I have finished 7 cycles, so 74 infusions in all and have decided to end my use of Radicava at this time. While impossible to know with certainty, I cannot say that I am experiencing any significant benefit. I have continued to decline at probably the same rate as before infusions or maybe even a bit faster. Breathing in particular has been deteriorating. Scheduled for another lung function test this week and probably start use of bipap. At this point I am opting for quality of life and doing the Radicava infusions 10x per month is not consistent with that. MT Pharma really needs to develop some way to measure efficacy on an individual basis. Taking Radlcava is a big commitment - in time, money and priorities - and needs to be supported by knowledge of its benefit.
 
Having read through this thread, I thought I would add my experience:
I was diagnosed in 10/2017, visited ALS Neurologist 11/2017, and started Radicava 12/2017 (but not taking Riluzole). I am on Medicare with a Medicare Advantage policy from a local provider. The approval process was very smooth for me.

I began with a peripheral IV started at a local infusion center; one stick. That had to be changed after 7 days, and the second peripheral IV took three sticks to get one to work. That convinced me that if I were going to continue on Radicava I would need a port. The port was placed shortly after the end of the first 14-day cycle. I have found the port much easier to manage than the peripheral IV.

For the second cycle, a visiting nurse accessed the port and administered the infusion, showing my wife each step of the process. After five infusions by the nurse, my wife began administering them. Since then, a nurse comes and accesses the port on the first day, changes the needle on the fifth day, and de-accesses the port on the 10th day. My wife is administering all the infusions. FWIW, we have found the regular gravity tubing kits easier to use than the Dial-a-Flow style; they are easier (for us) to adjust, and allow us to get more of the medication out of the tubing. We are also very grateful to be able to do the infusions at home. That is much less disruptive for us than traveling to an infusion center every time.

I have had minimal side effects. Around the time of the second and third cycles I had some minor headaches, but sometimes they occurred when I was "off drug" so can't be sure of causation. Otherwise, I've experienced no side effects, except as Rush714 mentioned, I have a subjective sense of feeling good when I am on drug. I've been through five cycles now, including the initial 14-day cycle.

I have lower extremity onset, and feel that I have continued to lose some leg strength (based on going up stairs) since starting Radicava, but as others have noted there's really no way to tell what the progression would be without the drug so we continue to take it on faith that it is helping to slow the progression.

I had some problems with the Tegaderm dressings that come in the dressing kit (skin irritation and pulling in the skin around the port), and changed to Sorbaview dressings, which are better for me.

Regarding showering, I also got a suggestion to try Press 'n Seal. That did not work well for me; just not sticky enough. A nurse friend suggested a product called Anchor Dry, which is a 7" square film with adhesive around the edges. They are large enough to cover the dressing and work well (but they do pull of some of my remaining chest hair). I also installed a replacement shower head which has a hand-held shower piece in addition to a traditional shower head and a diverter which allows you to switch back and forth (so you can use the regular shower head when not accessed). Found it on Amazon.

My last comment is that if you've read through this thread you've seen that different people can have very different responses to Radicava. When I started, my doc said that I would not be approved unless my pulmonary function was 80 or above, so it's possible not everyone will be able to try it due to health condition or coverage/financial reasons. But my two cents is that if you are eligible don't be put off because some people have had a bad reaction. Your experience could also be good, but you won't know unless you try it. To those who have not had a good result or response to Radicava, I am sorry and pray God's strength for you as you continue to fight.

Best to all,
Bill
 
I wish they would reevaluate and do infusions more than 10 days per month so we can see if it works!
 
My husband started radicava in January 2018, first infusion with picc line, following three with port in upper chest. No reactions to drug. Nurse comes at 7am to insert needle, but our daughter is learning to do this. I do the infusions and take out the needle after days 5 and 10. He is still working and so we usually start infusions around 6 to 6:30 am, have breakfast while infusing and we have the rest of the day free. His gait and voice seem a little worse, especially while off the med, but otherwise little further deterioration has occurred.
 
I do mine 10 days straight and then 18 wait! Wish they would allow more infusions, but they don't want to go through new FDA approval time!
 
Just finished round 6. No side effects at all.

I went to the clinic recently and was told my progression is slow to mild. Breathing was 72, down 3 points from last visit.
 
Began Radicava in January. Seem to have energy while on infusions but steadily declining rapidly each week it seems. Weaker physically and in general. Quickly moving from cane to walker and now thinking of mobility scooter. Has anyone who has decided to stop Radicava after having been on for 4+ months seen improvement after stopping? Having trouble deciding if we should continue or if we stop will I decline even more rapidly? Any experiences? Anyone doing better since getting off?
 
Pals just finishing 4th cycle. Feel better when on radicava. Can't tell if progression is slow due to meds or not. No side effects.
 
@SLSMITH - I've also been disappointed to experience what (subjectively) seems to be faster decline since starting Radicava. I try to keep in mind that the on-drug group in the trial still declined an average of 5 points over six months. Given the small sample size, I wonder if the same group divided into two arbitrary sub-groups might not have progressed at different rates even without the drug. No way to know. Like some others have commented, I would like to know what follow-up studies are showing about longer-term use and results after stopping use.
 
On my 6th cycle. The decline in my mobility which was advancing before has continued--I can't tell if Radicava has slowed the pace of that decline or not. Other functions are similar. No dramatic differences between infusion periods and off times, and no side effects I can detect.

Ed
 
I am on 6th cycle and no problems... wife thinks I do better on it.... I am in slow progression, but I don't know how I would be without!
 
Well, part way through my 6th cycle I quit radicava due to migraines it was giving me. That was about 6 weeks ago. I am feeling a lot better since quitting; a lot of that is because im migraine free again finally, but I also wonder if it was making me worse overall or something. I think different bodies react differently to these meds and it didn't go well for me but may be helping someone else a lot.
 
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