Radicava results

Status
Not open for further replies.

Pecksco

Member
Forum Supporter
Joined
Nov 3, 2015
Messages
26
Reason
PALS
Diagnosis
03/2015
Country
US
State
LA
City
New Orleans
This new thread's purpose is to document results after taking Radicava.
 
Last edited by a moderator:
I believe that this is already covered adequately in existing threads.
 
I disagree with the editors of my new thread. I have read all the Radicava threads that contain a lot about the trials and tribulations of taking this drug. What is wrong with a thread that is asking a direct question.......Have you had any improvement after taking this drug? A newcomer may go to this thread first before going to a year of Radicava comments on existing threads. It's called Bottom Line.
 
Pecksco, we try not to have too narrow a focus for threads so information someone is looking for is easier to find. It's called usability. Remember, you can always use the search box to find more specific terms like Radicava improvement.
 
It would be interesting to just see a poll, not sure if you can post polls on this forum.
 
You can Kristina. If you wish to, you start a new thread and scroll down you will see a poll option. You can have up to 10 options I believe and a chance ( which I recommend) to make poll answers anonymous
 
I agree with Pecksco. The Radicava thread is very long and much of it deals with insurance issues, how to administer, etc. I would like to see people respond with just results ex. 1) how long have they been taking Radicava, 2) how long have they had ALS, 3) ALSFRS when they started the drug, 4) ALSFRS now. If they stopped taking Radicava, then when and why.
 
The original topic was improvement or non progression only just so people know. Specific results in a separate thread will indeed be helpful. I would like to see the good and the bad though.

A successful report would realistically be slowing of progression as that is what it did in the trial. Improvement or even stability would be an unexpected bonus

I would also be interested in any effect on breathing and how close people were to the group that benefited in the trial- early in the disease, still functioning fairly independently, fairly fast progressing, breathing 80% or better
 
So is the thread staying open for results with Radicava?

I just returned from clinic this week. Here are my results:
Radicava started end of February shortly after diagnosis with ALSFRS at 42 (January).
May ALSFRS with 3 months of treatment was 38.
August ALSFRS with 6 months of treatment was the SAME at 38.

Unfortunately, there was no pulmonologist present due to scheduling problems, so I have no new data on respiratory function.

My doctor was thrilled with my "lack of progress" and so are we. He commented that the medication appears to be doing what it was intended to do.

Does this help with the discussion?
Cathy
 
I completed my eleventh cycle today. Still no side effects from the infusions. The only noticeable effect is an increase in energy levels during the 10-day infusion cycle.

My ALSFRS - R was 40 when I started the infusions in October. It was still 40 during my last doctor's appointment in July. She was very, very happy with the lack of progression as was I. My own self-assessment today still has me at 40.

My FVC in October was 104%, then 112% in February, then 102% in July.

While all of this sounds good, there are a couple of caveats. While the ALSRRS - R has remained steady, my speech and swallowing continue to deteriorate. They just haven't reached a point where another point drops from the score. I also find that I am losing stamina as time passes. I just wear out faster when I am out and about or when I work around the house. I guess I shouldn't complain too much, given that I am still walking, mowing the grass, and driving.

Of course, whether my lack of progression is due to Radicava or due to my particular case of ALS, I don't know. I do know that I will continue Radicava for the foreseeable future.

Dave
 
Summary-
Radicava start date: November 2017
FRS at start: 37
Radicava end date: April 2018
FRS at end: 33
Overall impression: I did not think it helped, and wondered if it was making me worse

Details:
I started Radicava in November 2017, with an FRS of 37. I did 6 cycles before I stopped in April 2018, due to migraines and feeling it was not helping me. Over the 6 cycles I did, my FRS continued a slow decline- 35 in January, 33 in April when I quit. Since quitting I actually felt better, though that also may be because
(a) the migraines stopped and
(b) I re-started AMX0035, the clinical trial drug I had been on, which I had believed was helping me, but which the trial had ended for and there was a 3 or 4 month lapse until the open label phase began. During that lapse when I was off the study drug, I was on Radicava, which I know complicates drawing conclusions from my data.

After ending Radicava my FRS stayed at 33 and is still 33, over 3 months later.
 
For us, it was sort of a disaster. The thing is we will never know if the disaster was caused by Radicava itself or the protocol they were using to prevent reactions (ironically) which involved a steroid.

I do know that within days of starting Radicava my husband went from walking up stairs with a cane to being unable to sit up in bed and getting appendicitis which lead to a hospitalization that lead to weeks of antibiotics and his further progression.

Honestly though, there is ALWAYS going to be the unlucky ones with a medication. Years ago my mother almost died from taking Sudafed.
 
i think that alsfrs-r is obsolete, inaccurate,unsufficient, etc...
maybe it is kind of direction (1 pt/month down should be standard deteriorate rate), but there must be included
alsaq-5/alsaq-40 score
fvc
pimax and pemax.
 
This is my first post on the forum.

I live in the New Orleans area and was turned onto Edaravone by folks at the Gleason Foundation shortly after my August 2016 diagnosis. My local doc was not familiar but I also travel to Johns Hopkins and that doc was aware but reserved in his opinion back then.

After considerable research In February 2017 I traveled to Japan where a wonderful doc agreed to treat. (Pre FDA approval). I came back with a supply for several cycles and had a second batch shipped in June 2017. Paid cash, about 2,500 each time.

Switched to Radicava in December and am continuing with it. I’ve never had negative side effects such as headaches as others report. Administered at home by wife through port access.

My ALS score in 2/2017 was high 30s, presently I am in mid to high 20s. FVC then was mid mid 70s, now mid 30s. I never know how to answer question of how/if it is helping since it administered to arguably slow progression. So I have taken the view that if I can afford it and it doesn’t carry negative side effects, then I will continue with it. Hopkins doc recommends I continue.

Hope this helps.
 
Status
Not open for further replies.
Back
Top