This is All New to Me

[Enough Already]

Thank you, Nikki J. Also, is there anyone on this site taking meds to slow down progression of our problem willing to post?

 

[Nikki J]

Slow down ALS. Aside from riluzole and radicava? I think virtually everyone tries different things whether approved drugs fpr anpther indication used off label ,supplements, or drugs in trial for als whether by trial participation , compassionate use programs or sourcing it somewhere often overseas.

Methylcobalamin injections probably have the most science for early stage disease. Your doctor can prescribe. Beyond that you will get lots of different opinions

 

[ahl39]

For what it's worth. Clinical trials are best. If you don't have any near you and cannot travel, currently the top 8 alternative therapies are (in no particular order)

ALCAR
Antiretrovirals
Clenbuterol
Nudexta
L Serine
Methylcobalamin (50mg injection only)
BASIS
Tamoxifen.

Alcar, L serine, and Basis do not need prescription. They can be found online easily with a quick search.

 

[lgelb]

In terms of "slowing down," which really means "more quality time," we have discussed early use of mobility devices, BiPAP, feeding tube, an advanced hospital bed, staying social and in nature, consuming music and the arts, assistive communication, real-food nutrition (including tube feeds), adapting your work if possible, etc.

These may all seem tame and boring but few PALS max them out and they have real impact.

Nuedexta is currently marketed for ALS, so it's not "alternative." Tamoxifen is an anti-cancer drug that is no longer being explored in ALS. I won't go through the whole list above, AHL, except to say if you got it from browsing ALS Untangled, that's a very skewed view because their review portfolio is based on crowdsourced requests rather than merit.

In addition, most of the agents listed above would need careful consideration beyond their effects on a random PALS, to someone with a seizure disorder, and most trials of anything but anti-epileptics will be closed to someone with your history, Puyallup.

Fortunately, clinical trials, the majority of which fail, are not the only or best pathway to alternative treatments, which if you take a broad view of the term as I do, are plentiful and only hinted at by the first paragraph of this post.

The same means that extend lives in other terminal conditions have extended far more PALS' lives than semi-random dice rolls.

Sure, most everyone tries something off the beaten path, finding their own happy medium with that. Just bear in mind, the considerable time some PALS spend chasing/using/paying for/metabolizing a miracle cocktail, often with self-canceling or counterproductive combinations, is generally wasted.

 

[JAM]

Thank you Nikki. Our Neuro never suggests or explains any possible drugs. Is it really left up to the PALS|CALS to research and read up on everything out there in addition to just trying to survive day to day & deal with this awful disease?? I mean WTH? Seriously no direction. First I’m hearing of this one- so thank you for mentioning it.

 

[ahl39]

Dont disagree with you about the bipap, mobility devices, nutrition etc. However, these are generally followed up on by specialists at all ALS clinics which include SLP, dietitians, respiratory and neurology.

I am simply answering the very specific question posed in the thread here which is are there any meds that can potentially slow progression. I do think there are promising drugs that can work.

I did not pull my list of drugs out of nowhere. These medications are from the presentation "most promising alternative and off-label treatments" by Dr. Bedlack at NEALS 6/14/2024.

We can argue that he is a quack and als untangled isn't scientific. There are definitely heated discussion about him on the r/als reddit threads. But all of the drugs I listed had phase 2 trials with trials grade of D and above. Methycobalamin especially have a successful phase 3 trial and is approved in Japan based on these trials (Rozebalamin by Eisai on 9/24/24).

For what its worth. My personal experience (n=1) is that some of the drugs may work. My mother lost 8 ALSFSR between December and May (when she was diagnosed), but then started on ibudilast, nudexta, methylcobalamin, L serine and ALCAR. Have not lost a single point since June. May be normal plateau, but who knows.

 

[lgelb]

I understand the source, but the list cannot possibly be up to date as per the facts above and more.

I do encourage everyone eligible to ask a doc about Nuedexta, a marketed/indicated drug, which is in fact underutilized. It's counterproductive to have it on an "alternative" list. B12 is also approved for ALS in Japan.

Lumping compounds whose records are so different into a "try it, you'll like it" group obscures the differences between rx and OTC, on and off-label, and likely safe for PALS at tested doses vs. distinct contraindications. It's the difference between education and everything else. Many PALS do plateau for a time several months after dx, btw.

Trials should not be assigned letter grades and even if they could, a D is a pretty low bar. I'm an outcomes researcher published in clinical journals, have reviewed patient-centered research proposals for federal funding, etc. But Dr. Bedlack and I will have different perspectives even before we get to his and Untangled's mixed record. He runs a clinic, but his is not the skin in the game. He gets paid and published regardless of what happens to you and yours.

We tried several supplements not on this list, but these were determined by my late husband's pre-existing conditions (including a generally-fatal genetic disorder) and available information, so I will never share this list as some sort of recipe. That is part of my point.

Determining what potential treatments are be right or wrong for a PALS isn't something to outsource to a single person or matrix, when you are putting substances into your body. Again, we have cited several examples, from meds to supplements to diaphragm pacers, where "let's try" made individuals or populations with ALS worse, accelerated their progression, not just "made no better."

Hopefully, we can agree that it's a bad idea to accidentally hurt yourself before ALS does. And yes, I have and will always make the same argument on Reddit.

 

[Nikki J]

If people want to try things consider asking your neurologist to order nfl levels perhaps every 6 months. After an initial rise nfls tend to be stable in PALS until endstage when they drop possibly because nothing is left to degenerate. It is still n=1 data but a major drop would back up an anecdote. Incidentally my neurologist says a 20% variation can still be random

 

[Enough Already]

WOW! That was a bundle of information. Some of the abbreviations I will need to look up and see what they are.
Thank you everyone for all of the information you gave me. Absolutely over the top.

 

[Enough Already]

On Oct. 22nd second EMG for second opinion confirmed ALS. Disappointed though not surprised. Doctor was not really able to explain why the onset of hip joint pain. I thought there was not supposed to be much pain with this illness. Does someone have any insight into this matter? I would like any one's feedback and what others might have experienced also.
Thanks for reading.

 

[Nikki J]

Sorry to hear. You can get pain for a few reasons. Sometimes it is something else but also if your gait is off that will put strain on your hip and cause pain and after progression when the hip itself is weak there can be pain due to lack of support

I get ankle pain sometimes and occasionally back pain. It goes away after I start using my afo and rollator

 

[ShiftKicker]

I get hip pain and lower back pain. Comes from having an altered gait and posture that causes abnormal wear and tear along with strain on weaker muscles and pull your back out of whack. A combination of weak and/or spastic muscles can definitely cause issues.

If you have access to a physiatrist or an experienced physiotherapist, an assessment may help provide some insight and mitigation of pain/strain.