Medications

[Tchrcheri]

How effective are the meds typically prescribed for ALS? What has been everyone’s experience w/ it? Thank you

 

[Nikki J]

the main three riluzole radicava and nuedexta.
riluzole. A pill, easy to take and well tolerated by many. Biggest issue is liver and it requires periodic blood tests. Experience varies but it is supposed to slow progression by about ten percent. if it is started VERY early some say 25 percent but it means earlier than most are diagnosed. I am FALS and got it early. I think it helps a lot but I am not typical.

radicava. The population in the 6 month study slowed progression by 30 percent. However a previous study showed no effect and the successful study was of a subgroup. Early diagnosis, functioning independently, ok breathing and progressing average to wuick pace. There are threads here about experiences. Impressions vary. It requires iv infusions 10 days every 4 werks (14 days to start)

nuedexta. It is indicated for emotional lability but anecdotes and a study show transient improvement ( about 6 months) in bulbar especially swallowing

there are various other meds for symptoms

 

[Tchrcheri]

Thank you Nikki- you are so knowledgeable in all of this. My dad went on Riluzole this past week, but has already lost so much functioning. I have also seen so much on supplements , naturopathic remedies etc., what are your thoughts on those? Help any?

 

[Nikki J]

Many of us take supplements. As far as some of the claims for remedies and cures my advice save your money and your dad’s energy.

there are quite a few threads on supplements if you search. My general advice is to understand what the supposed mechanism of action is, look at precautions snd interaction, start slowly and remember you can’t take everything you read about. Consider too that it can be hard to take a lot of things and they might affect appetite. Maintaining weight and avoiding falls / injuries will probably serve him better. run any supplements by the doctor. Some don’t believe in them but others will advise. I don’t take any except D because I am deficient and magnesium because it helps cramps. All the others I stopped because they were aburden and I didn’t see any benefit. Ymmv but don’t overburden your dad

 

[Tchrcheri]

Great advice thank you!

 

[mytmouz]

I am a limb onset PALS, and with rapid progression. I started taking Riluzole. I was prescribed it while still able to use the Walker to transfer, but insurance kept denying it. I think if I had gotten it then, I would still be able to use the walker. It has slowed the progression for me, as I had started losing function in my right arm, and based on how quickly I had been going down, I don't think I would have any use of the arm. I think it may hold out to the end of the year now...

 

[Tchrcheri]

Thank you & prayers that your progression goes slow & you have many days w/ your loved ones yet

 

[KimT]

My only advice is to do blood work and address all deficiencies. I believe taking care of your general health, including eyes and teeth, can only make your quality of life better. Your PALS needs to focus on getting enough quality food, hydration in the form of water, and adequate sleep. Range of motion exercises, whether active or passive can also help as does massage (from a MT with knowledge of ALS). Bowel movements should be regular, otherwise up the magnesium dose and add Colace (a very safe stool softener.)

I take about 20 supplements and have recently added collagen peptides and broccoli sprouts. I eat very healthy.

 

[Kristina1]

I agree with what others already posted, but would add that there are some promising clinical trials right now. I would consider choosing one to participate in. Most will only take patients who are within 2 years of ALS onset. Onset not diagnosis, meaning from onset of first symptom(s). I had symptoms for about 15 months before my actual diagnosis, which meant for most clinical trials, if I wanted to do one, I had to enroll in the first 9 months after diagnosis. Something to think about.

 

[Ken15]

I have also seen so much on supplements , naturopathic remedies etc., what are your thoughts on those? Help any?

A mind-numbing list of alternative treatments: ALS Untangled Completed Reviews

Ken

 

[Julia85]

My mom is ill for more than a year, first symptoms in 2017. Debuted with the right hand. Slowly progressing, included the left one and legs. Because of wrong diagnosis lost a year of a proper medication, now on Rilutek - since august 2019. Don’t see prominent results, but who know what it would be without it. Adding vitamin D, lysin, coenzyme q10 and supplements for immune (supergarlic), from time to time B-vitamins (now Neuromultivit). Slowly progressing. Russian docs sometimes prescribe Meldony (Rilutek/Riluzole is not registered here) and neuroprotectors/neuropeptides. In Russia finished tests of Adevask. Nothing striking and still not on the market because of no manufacturing.