Trials/Treatments/Supplements - What works for you?

[njk0407]

Hi,

Would anyone mind sharing what trials, treatments, or daily supplements you are on and feel are benefiting you? My husband and I are trying to come up with some sort of plan and seem to be at a loss. Everything seems so confusing. I appreciate it immensely. Thank you.

-Nikki

 

[Nikki J]

It is very confusing and overwhelming I know. Add to that, ALS is not one disease but a group of diseases ( the ALS doctors say that if you have not heard it). Some divisions are obvious. My family has ALS caused by C9 orf72, I have a number of friends who have variants of sod1, there are a number of other FALS variants. Our symptoms are the same but what works for sod1 may not help me and so forth. SALS has different presentations and probably different causes too. One size does not fit all.

Are there good clinical trial options near you? I would consider those first. Most clinical trials disqualify you if you are taking what they deem experimental treatments within 30 days of your study intake visit.

Beyond that many of us take different supplements for different reasons. From experience I will say pick carefully. At the beginning you think you will take everything and anything that seems reasonable to try. I did, and I developed a list, which my neuro approved and added to. I took everything for a while but it got to be too much and ended up taking nothing. The only thing I think helped was riluzole. Many think riluzole is useless YMMV.

You can read here and elsewhere supplement lists. Consider how they interact and if your husband has any other issues be extra careful.
Be wary of the snake oil salesmen who love to prey on us

Look into methylcobalamin and read what you can about that study. Small published studies exist on tudca and acetyl l carnitine. Research is indicating an inflammatory component to ALS ( see Dr Atassi's ongoing PET-MRI study. He talks about it on a recent NEALS webinar and you should listen to some of the archived ones including the one most recently on clinical trials)
http://www.alsconsortium.org/educational_webinars.php
Good luck

 

[njk0407]

Hi Nikki,

Yes I've heard that. It's so frustrating as I'm sure your well aware. My husband is eligible immediately for the Terisemtiv trial, but our concern is that he could possibly get the placebo for a whole year. He's currently on Riluzole and I've been looking into the high dose B12 injections, Protandim, and some supplements from the Deanna Protocol. Other than that I think there are some upcoming trials for Retigabene, NP001, among others. I'm so confused and so unsure what to do. I'm pretty sure he is Sporadic because nobody in his family have had it, but we're doing the gene testing to be sure. I've read a lot of your threads and value your input so thank you.

 

[njk0407]

Do you have any thoughts on Lunasin and Actemra? Not sure of the spelling sorry.

 

[GregK]

Nikki: Search

The are two current threads on Lunasin worth reviewing but few about actemra.

 

[njk0407]

Thanks Greg!

 

[lgelb]

I posted the Actemra™ trial link.

 

[BetsyB]

two days ago there was an article in the WSJ about ALS patients who improve, and studies about why they do.

The Mystery of ALS Patients Who See Improvement - WSJ

 

[Atsugi]

Good story, with Dr Bedlack as the primary source, but I am skeptical of the comments that accompany the article, so reader beware.

Thanks, BetsyB.

 

[Ells]

This is very basic, I know, but as the first step, make sure your husband is getting the best possible nutrition and lots of water!

 

[Nikki J]

Nikki please look at the NEALS webinars especially the recent one on clinical trials. There was one Dr Bedlack did on the reversals phenomenon too. The problem with one person having a reversal ( which is why Dr B is studying lunasin) is there is no way to tell whether it was really the intervention they tried or if they are that very rare person whose body can heal itself or some unrecognized factor.

I believe all the current and upcoming trials have a placebo arm. I heard Dr B say once there was a study that showed patients in trials did better He postulated that being in the trial having study visits on top of regular ones and developing stronger relationships with clinic staff helped though perhaps PALS who do trials differ in some way from those who do not!

I would consider that a phase 3 has gone through more hoops already than a one or two. Of course those of us who have been around have seen the promise of phase 2 trials collapse in phase 3 as happened with Dexpramipexole

 

[njk0407]

Thank you Nikki. You have been so helpful.

 

[BetsyB]

I am investigating winter cherry aka ashwagandha.
PLOS ONE: Water Extract from the Leaves of Withania somnifera Protect RA Differentiated C6 and IMR-32 Cells against Glutamate-Induced Excitotoxicity
Combinations of Ashwagandha Leaf Extracts Protect Brain-Derived Cells against Oxidative Stress and Induce Differentiation

this plant grows as a weed in my southern region of israel and in the past i harvested the roots from the plants growing as weeds in organic citrus groves, and tinctured them by extracting in vodka, then took the extract for awhile. certainly this molecule can get past the bbb and do something beneficial to the brain, in my personal experience. i found it to be a powerful mood booster and aphrodesiac. almost too powerful.
but these research studies and others out there indicate that there is scientific basis for the age-old ayurvedic use of the plant. neuroprotective.
i would like to hear from anyone who is taking extracts or tinctures that are more potent than off the shelf supplements.
betsy

 

[BetsyB]

here is more on a leaf extract compound in preclinical trials

News - ImStar Therapeutics, Inc. - ALS Breakthrough