Riluzole and Radicava

[Carolyn Barry]

I’ve been on both for about a year. Fortunately I am not rapidly progressing and have been fairly stable. I was diagnosed a year ago and began both treatments pretty quickly.

[Jan: CA, pals]

Thank you Sonsu for starting this post, I was lucky to find it 🙂   I usually get 2-3 emails daily from ALS and honestly with that many… I now refuse to even bother to open them up—> overload!

Nothing is really new to prevent, stop or reverse ALS as of now.  Reading more that 15 minutes of this stuff is depressing me for the whole day, so why bother and I don’t need to educate myself any more on ALS. ‘Just my opinion…

What I am really interested in is a question such as yours and similar questions/discussions/information, on how you/we are feeling, reacting, progressing,  problems, solutions, fears, challenges, successes…  ALS is not common, so it is not often that one of us can say… oh, my neighbor, or I have a friend, or I just overheard someone at the supper market… typically, that doesn’t happen in our world.

I believe what we all need is a friend, afriend with ALS that we can really talk to.

So here goes, first symptom June 2020, diagnosed (bulbar) January 2021.  On both: Riluzole in January and after logistical/manufacturer/financial complications, started Radacava late June 2021 at local hospital.  This week I will complete my  65th Radacava infusion!  WOW!!!

I’m not sure how to answer your question: “how is it working?”  Hard to say…  In January 2021, I was able to talk, but with a little slurring and able to eat normally.  Now 11 months later, I cannot speak at all, I carry around a pad and  pen, a friend bought a dry erase board and that works pretty good, plus sometimes I use “notes’ on my iphone. Unable to make/use the phone.  I would use notes all the time, but I don’t type every fast ’cause I’m not 12 or 13 years old!  So blessed to be able to text now days!!!

Also, because I cannot eat normally, (lost weight),  not drinking water,  🙁  my veins appear to be popping out, I mean are raised and more visible.  In the past year,  my skin seems very wrinkled,… water is really the fountain of youth!  Yes, I use Thick-it… hate that slimy stuff, but am getting used to it.  Yes, I enjoy cooking, but have to put everything in the blender: that goes down pretty good. “I eat to live, not live to eat,” Biblical or Benjamin Franklin?

Are you on R&R ?  How is that working for you?

If R&R is supposed to be good for me… my question is how would I be without it?

Don’t know! Thoughts???

From your new friend, willing to listen and share.  .  .  .  .

[Bill]

I’m almost 4 years post diagnosis. 5 years from starting search for your diagnosis. Probably had first symptoms 6+ years ago at least. Both my university neurologist, an ALS researcher and professor and my local ALS clinic doctor basically convinced me not to take either as they did not foresee them helping me with my progression rate. Obviously Radicava not easy to take. I believe , if oral Radicava pans out, I may try.
I know lots of pALS who take both and have been for a long time. Those taking Radicava seem to stick with it,  I’ve met lots taking Riluzole since their diagnosis and a number who quit it due to side affects. Seems they really don’t know the affect but don’t want to stop.
All you can do is read the studies which say both help some but do not stop the disease. Our individual variation in progression makes an accurate measure on an individual pretty tough. I’d use your ALS specialist recommendation. I find the cost of ALS drugs unconscionable.

[Lynn Goldberger Gross]

Bill. I am curious about the side effects your friends have experienced from Rilizole.  My husband has been on it for a year and and within the last few months , he has passed out and fallen.  One of these required a hospital visit. What side effects do your ALS friend complain about?  Is dry mouth one of them?

I’m not happy with the ALS clinic because I realize it’s not for us but for research for the next generations. Being a Guinea pig is not a cure for us. This May sound selfish but I’m interested in approving and saving his life.saving

[Dagmar]

Lynn, I have been taking Riluzole for 12 years now – – no side effects at all – -and, I’m still here 😉 …which to me, says it’s doing something positive.

How do you know that your husband’s fall was due to the Riluzole? Having ALS is a life lesson in the adage: “association does not necessarily mean causation.” What else is he taking or doing to help treat his ALS? Perhaps his vestibular system is needing stimulation (as a result of sitting and lack of movement)? If so, I have a series of simple head movements that I can share, that work for me.

[Karl Schachtner]

Hi, I’ve been on riluzole since my diagnosis over 5 years ago. I started on radicava almost 4 years ago. I’m blessed that my progression is so slow – lost my voice completely after about 1 year, got a feeding tube 2 years ago due to progressive swallowing problems but up until 1 1/2 year ago I was able to walk unaided, now I need a walker.
Whether my very slow progression is due to these medications or not, no one can know. I’ve never had any side effects and the medications are covered by insurance, so I’ll continue. Plus the infusion center where I receive radicava is convenient and close by, and all the nurses are so kind, it’s actually a pleasure!

[Gregory M Hickson]

Hi. My name is Gregory and I’m on R & R & N (Nudexta). First noticeable symptom, hoarseness, Feb 2019. All the usual test to figure out why I was hoarse. Figured it was ALS Oct 2019 when ENT showed me my tongue and vocal cords quivering. (they weren’t a month before) Finally got in to see Neurologist #1 Feb 2020 and had Neurologist #2 give EMG Mar 2020, probable ALS. Covid slowed everything down but got from Neurologist $3 diagnosis, bulbar onset, June 2020. Started all 3 ALS meds July 2020 and still on all 3 meds. Don’t know if they are working but I figure might as well give them a shot, after all what have I got to lose. Got Trilogy July 2020 and feeding tube Nov 2020. Can’t speak since Feb 2021, so I use verbally app. on I-pad. Use suction machine and cough assist regularly. Use atropine drops, glycopyrrolate and just started botox shots to combat Saliva issues. Hands are getting weaker, have an EyeOn computer that I practice on for now. Used a wheel chair at my doc appt last week for the first time ever. It served me well so time to get my own. My legs are good for now but my breathing slowing down, 48% last test. My spouse of 28 years is my Cals and he is my hero. Hello to all who read this and thanks for your postings, they help.

[Lori]

Hello,
My husband was on Radicava for 2 years when all of a sudden he had an anaphylactic allergic reaction to it.
Has anyone else had this?

The only thing different is that he had just recovered from Covid and then resumed his treatments.

It’s very disappointing when there aren’t other treatments (other than riluzole)

[GtrJim]

My wife was diagnosed in 2017. She has been taking Riluzole since then, first as a clinical trial participant, and then on a regular basis. Her progression has been slow so we assume that the Riluzole is effective, and there have been no side effects.

[MaryConnolly]

This is such a hard question to answer. All I can offer is “there is no control _____” fill in the blank of the name of your loved one. Were there a scientific control for my pALS I would have a more definite answer. So yeah, I don’t know if any of the meds (FDA or experimental) are working. And I can’t tell you the impact of faith, positive attitude and acceptance of one’s disease have on ALS (although studies generally appear to lean favorably in this direction for ALS and terminal illness). ALS and its manifestation are so unique for each pALS that it’s nearly impossible to know if your pALS is benefitting from Radicava, Riluzole, home brews of sodium phenylbutyrate and TUDCA, Theracurmin, clinical trail meds and EAP meds, vitamin B, lotsa kale and green tea, whatever you’re taking. What’s most interesting to me though is hearing your stories, hearing about your PT programs, your OT recommendations, what devices you use to get your pALS safely showered and moving in their environment, what your diet includes regarding antioxidant and anti-inflammatory foods, and how you manage mentally from day to day as a caregiver, etc. I wish it were as simple as twice daily Riluzole tabs and Radicava infusions (which we do 10 out of 28 days every month). Again…There is no control for my pALS. And yet we press on and meet each day and all that it holds. Peace out.

[Dagmar]

Well said, Mary. Well said. I agree that since we don’t have exact twins of ourselves, to serve as the “control,” we have no way of knowing exactly what combination of treatments and therapies work for our body. Trial and error, doing your research, and listening to your body seem to be the only guides for us.

[Jim Conner]

I have taken Riluzole until it upset my stomach and I am on a break from it. Haven’t noticed any difference, the disease keeps progressing. Where I lived I could not take Radicava unless I traveled a bunch and since the jury is out on its effect, I passed.

[Judy Weger]

I take tudca metformin and p. serine these helped me more than rilozole