SUPPLEMENTS TO SLOW ALS PROGRESSION

[Deleted User]

Hi Silvia,

Sorry nobody picked up on this sooner. There are many different things people take for ALS. A person can spend hours and hours just researching this topic. I am a slow progression and Riluzole is not a good choice for me. I am on Radicava though. These are the only 2 meds our doctors can prescribe at this time. It is always smart to talk to your doctor before taking anything else.

I started taking lion’s mane mushrooms as a supplement because it stimulates nerve growth. I also take a cordyceps mushroom supplement because it helps the immune system. I have to be cautious with cordyceps because I am diabetic, and it helps lower blood glucose. I also take magnesium supplements because if I do not my cramps get severe.

“ALSuntangled dot com” gives a lot of info on other options you may find interesting.

[Bob Owen]

Yes, I take Riluzole.  I also take TUDCA: 500 mg two times a day.  The brand which I use is Double Wood supplements

I seem to lack energy: is this my condition?  A couple of contributors to this survey have said that Riluzole had bad side effect, which caused them to stop taking it.  If I stopped taking it for two or three days then what would be the risk?  Or is it the TUDCA?

AMX0035 is a Fixed Combination of Phenylbutyrate (PB) and Tauroursodeoxycholic Acid (TUDCA).  Dosage during the recent trial was 3g PB and 1g TUDCA once a day for the first three weeks then twice a day thereafter.  PB is available on prescription.

[Judy Silman-Greenspan]

Yes, riluzole makes people tired = asthenia. it’s the greatest sleeping pill around combined with melatonin 5mg. It knocks me right out. For the daytime dose I make sure I am engaged in an active activity so I don’t feel it so much. I also take it with some food so it doesn’t give me heartburn. Fatty food really decreases riluzole absorption. You can tell by not getting the fatigue if you take it with ice cream or other fatty food.  I try to take the many supplements that Life Extension ALS program suggests.

I did a lot of research and found TUDCA over the counter. I take 1 gram twice a day. I had a prescription for sodium phenylbutyrate. It took 6 tablets to make the dose. I was gagging after 5 tablets so I stopped it. It tastes like sour milk. After all butyric acid is found in butter.

[Amanda]

Like John mentioned, please be sure to talk to you doctor about any kind of supplements before starting them.  There are all kinds of theories and suggestions and you need to be very careful.

[SILVIA ARG]

Thank you for your opinions. And what about antioxidants? I use vitamin C (2g), vit E (1 g) and niacina (25 mg) each day.

[Deleted User]

ALS Untangled has a section “Completed Reviews” you may find the answers in. You might also try to source studies on the NIH website (NIH. GOV).

 

Try removing the space to link.

 

 

http s://s earch.nih.gov/search?affiliate=hip&query=ALS+and+antioxidants

[Duane]

I wish the good Dr. Bedlack would change the name of it since it “untangles” nothing. Unfortunately human studies are lacking on many of these substances and while they may be in general safe, there is always a possibility of an adverse reaction in certain individuals.

[Elizabeth Pacheco]

we all look to supplements to relieve our symptoms and hope that they can somehow slow down progression. I see a Dr. that also practices alternative medicine. Under her suggestion I take B complex, alpha lipoic acid, vitamin C  a d Mag very important and on my own I take Tudca. It’s one of the ingredients in Amx 0035 so why not? 

[Paul Tavano]

I have a very slow progression of ALS. First diagnoses in 2009 and have lost very little function. I take riluzole along with vitamin B12, C, D3, E, beta carotene, folic acid, magnesium and melatonin. Most of the vitamins were recommended to me from An ALS research doctor. Not sure if any of it helps but doesn’t hurt.

[John McCormack]

Thanks Paul. I was diagnosed just a few months ago. My ears tend to perk up when someone who has survived as long as you have speaks up and I’m grateful for this forum that allows that to happen. I read constantly about these supplements and it can get confusing. To hear personal experiences helps. Like you said, it doesn’t hurt.

[Bill]

I also am slow progression. I do not take either Riluzole orRadicava. My Drs didn’t feel either would do anything in my case. I do take Theracurmin, B12,  magnesium, fish oil and multivitamin. I was borderline low in B12.  No a clue if any of it helps. I do believe the Theracurmin makes me feel less pain in my spine and joints although I don’t think does anything for my ALS.

[DavidW]

I am taking both Sodium Phenylbutyrate and Tudca (these are off-label Rx for the components of AMX0035 ).  It’s expensive and not covered by health insurers as they are not FDA approved).   As it is tax time, do you have any experience with whether the cost can be deducted on one’s US tax return under the criterion: “nutritional supplements prescribed by a physician.”

[Mike Minardi]

Here are a list of meds / supplements my wife takes in addition to Riluzole. Her neurologist has prescribed a number of these and she is also fortunate to be part of the MGH / Healey Center expanded access program.

Sodium Phenylbutyrate + Tudca – SP has to be prescribed and is not covered by insurance and Tudca can be purchased on Amazon
Metformin – prescription
Mexilitine – prescription
Neudexta – prescription
Baricitinib (Olumiant) – prescription
Acteyl L Carnitine – OTC – Amazon
Elysium Basis – OTC Supplement
Theracurmin – OTC Supplement
RNS60 from Revalesio – Expanded Access Program

As others have stated, please confer with your neurologist. If you want more information, please send me a note.

[Bruce Black]

The statement that sodium phenylbutyrate “is not covered by insurance” is not necessarily accurate.  My wife has been taking sodium phenylbutyrate since January 2022 and it has been covered by her insurance (Massachusetts BCBS Medicare PPO Blue ValueRx – a Medicare Advantage PPO plan), with copays as required fr all medications with this plan.  We did not need a prior authorization and in fact did not have to do anything at all to get this covered.  I would not be suprised if many insurance plans will not cover this or will require a prior authorization and then refuse to cover it for an “off-label” indication, but you should try to get it covered by your plan before assuming it will not be covered.

[Mike Leist]

Supplements :
AAKG, Ceylon Cinnamon, Theracumin, resveratol, liposomal glutathione, alpha lipoaic acid, L-Carnitine, L-Serine, Centrum multivitamin, magnesium, mushroom extract

I asked the following question to my neurologist, based on the same research that recently came from Scotland. Here’s her response also:
Q: There was a study recently at the University of Edinburgh that shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria. Can you recommend anything that might help achieve this, whether it’s through food, supplement, or medicine?
A: The next step is that the researchers at Unv. Edinburgh are working to identify such medications. L carnitine 500mg 3x/day has the strongest evidence to support its use. Alphla lipoic acid was promising in mouse models but does not have human trials to support use (but is low risk to try). CoQ10 and creatine were previously studied but did not seem to have significant effect”.

These supplements are pretty inexpensive, and you can get them on Amazon, or wherever you go to buy supplements

[Scotty]

sometimes the problem with taking so many supplements is that they can make you feel sick and tired, in high doses and with certain combinations. Anyone else experience that?

[Suzanne Gallo]

Scotty

yes definitely taking a lot of supplements makes my PALS feel terrible. Dull, tired, kind of sickish-blah.
all the supplements are prescribed by a natural medicine PhD practitioner, with 40 years of practice,so it’s not like we are doing this on our own.
it is definarely discouraging

[Ken Erickson]

I use Protandium NRF1 & NRF2 From LifeVantage. These supplements get free radicals, oxidative stress and inflammation out of the body and also protect cells.

[Dagmar]

Ken & members of this Forum – – please use caution when choosing to consume supplements and freely recommend them to others. Supplement in mega-doses are a type of “medication” and should be treated as such.

Regarding the supplements suggested by Ken from LifeVantage, note that the company has been issued a warning from the FDA:

“Protandim is a herbal dietary supplement marketed with unsupported claims that it can treat a number of medical conditions. The product is a patented[1] mix of five herbal ingredients and sold by LifeVantage Corporation (formerly LifeLine Therapeutics, Lifeline Nutraceuticals, and Yaak River Resources, Inc), a Utah-based multi-level marketing company.[2] The manufacturers of Protandim claim it can prevent or cure a wide variety of medical conditions, including diabetes and cancer.[3] In 2017, LifeVantage was issued a warning letter by the U.S. Food and Drug Administration (FDA) regarding illegal advertising claims on the company’s websites suggesting that Protandim can help to cure various ailments, including cancer and diabetes.”
https://en.wikipedia.org/wiki/Protandim

[Ken Erickson]

Well the FDA needs to take a better look at it.

[Amanda]

@Ken, I think we would all agree that the FDA needs to take a better look at a lot of things regarding ALS and other rare disease. Members of our community can help by getting involved in advocacy and reaching out to our state representatives in support of specific actions.  As moderators and members of our online community, Dagmar and I just want to caution pALS and caregivers that there are a lot of things to consider and to do their research before taking any supplement.  All of the advice and suggestions that are posted in our forums is important and valuable.

[Harvey]

My doctor at the Cedars Sinai ALS clinic recommended Tudca. Building up from 500 mg to 1000 mg twice a day in addition to Riluzole.

[Gideon]

My wife taking 500mg Tudca 2x a day, B complex, alpha lipoic acid, THC 50mg 2x day, Taurine 1000mg, NAC 600mg, Riluzole 150mg Radicava and more.
This year my wife ALS turn aggressive afther slow progression for 4 years.
My wife losing her voice, and can’t walk or stand any more. losing her memory.
I praying for all of you.

[Dagmar]

That is an impressive list of supplements, Gideon. Was she taking these prior to her ALS symptoms progressing faster, or after?

My own ALS plateaued for 4 years, then I had voice and swallowing issues – – and that has all plateaued for the past 7 years. So, perhaps her symptoms aren’t more aggressive, just changing. Hopefully she will experience a long plateau as well.

Not sure if her loss of memory is due to ALS though. Stress and anxiety can be possible causes.

[Gideon]

She taking all this supplements for 4 years
just this year ALS symptoms getting more aggressive.

[Linda Lennon]

In addition to some of the supplements mentioned by others I’m using red light therapy my research indicated it helps mitochondria the cells power house, not sure if its helping.

[Shawn]

This is my list of meds/supplements I worked out with my Mass General / Healy ALS Center Neurologist:

Magnesium / OTC / 250 mg / BID

Riluzole / Rx / 50 mg / BID

Edaravone / Rx / 60 mg infus / 10x Mnthly

Nuedexta / Rx / 10 mg / BID

TUDCA / OTC / 1000 mg / BID

Sodium Phenylbutyrate / Rx / 3000 mg / BID

Methylcobalamin / Rx / 2×25 mg IM Inj / BIW

Acetyl-l-carnitine / OTC / 1000 mg / TID

Curcumin / OTC / 90 mg / BID

[Stephanie]

Hello Shawn!  My husband was just recently diagnosed and I’ve been reading about supplements quite a bit and came across your list. Are you having any successes with these? We are meeting with my husbands neurologist in October and I’d like to discuss with him. I’m just curious how they’ve worked for you. Hope you are doing well.

[Henry]

I recommend to make urin, stool, hair, DNA and blood tests and take supplements based on lab results. This is still not a guaranty to stop progression, but at least you know that you need it. Just to buy stuff into the blue may be a complete waste of money and time.

Henry

[ASOKAN]

Hi,

I am also onto Supplements, First I took an 8 day Therapy at  “wellness Solutions Pvt Ltd” Cochin, India. The treatment started with IV Cocktail Vit B, Vit C, Magnesium and Carnitine. 2nd and 5th day was Chelation EDTA and IV cocktail. Day 2 to 8 Major autohemotherapy was also done. Oral Medication continues for 10 days with review after 10 days. After the 8 days my walking endurance has improved from 5 1/2 mins to 8mins.

Oral Medication:

Numirich-EC 1-0-1

Orthoplex Zinc Citrate 1-0-1

Neuronz D 1-0-1

4U-Q10 Plus Cap 1-0-1

Enzorux Forte 1-0-1

Orthoplex Clinical C 1-0-0

Orthoplex Citra Mag  0-0-1

Hope this helps in arresting the progress or atleast slow the progress

Capt Asokan

[Andrew UK]

I am beginning to rattle with the volume of supplements!

If I had to choose then I would say that Liposomal Glutathione and Ibulast have when I have stopped taking them shown an observable/ anecdotal acceleration in progression. This may be coincidence but why take the chance. I only take 10mg (1 tab) of ibulast not the 60-100 in the trails. I have found that not all liposomal Glutathione is the same. A perceived decline occurred when I changed brand. I currently use Youth and Earth (I have no affiliation). I also take TUDCA, Mg, Zn, butryate, NAC and Curcumin.

I am considering pharma GABA and Lions mane extract.

I try to introduce one product at a time over a period of weeks to see if there any effects adverse or otherwise. Anecdotally, I think reservatrol had an adverse effect.

As ALS appears heterogeneous everybody should take an individualised cautious approach.

 

 

 

[Ann Thomson]

What are good brands for Tudca and other supplements?

[Carol]

I don’t think it’s possible to discuss supplements without first identifying all one’s symptoms & other health conditions. For example I was on low dose blood pressure med & one day forgot to take it & for first time in 3 years I was not dizzy. Never took it again. Tried Riluzole for 3 weeks; couldn’t get out of bed til afternoon my head was so screwed up. I take a few vitamins + small amount of Baclofen. At severe fall risk (2 years with 2 wheeled walker) having clear head is #1 priority.

[ED]

I also quit Riluzole after six week trial. It didn’t slow my progression at all, plus caused me to be fatigued all the time. I could just eat a meal and be wiped out and have to rest for an hour.

Two days after stopping the Riluzole I was back to normal on energy level.

As far as supplements,(I have tried many) the only one that I know for sure helps me is Curcumin with black pepper extract.
I also take vitamins B,C,D3,E plus CoQ10.

I know that if I’m delivered from this it will be by prayer and God’s grace.

[Jörg Dimmeler]

Hallo ED

Das Habe ich auch versucht, nach dem ich das von dir Gelesen habe. Hat leider nicht Funktioniert.

wird vermutlich nicht bei jedem so sein??

[NJGuy]

I also quit Riluzole after about 5 wks. I would actually make me feel tired, low on energy, more muscle weakness than before, feel dizzy, loss of appetite, indigestion, etc. About 1 wk now without Riluzole, and I feel good strength, also can do exercise better.

I am also taking supplements like vitamins B12, E, CoQ10, TUDCA, also natural Turmeric powder (Curcumin) with black pepper in warm water.

Question: Anyone taking Theracurmin? is it better than Curcumin with black pepper extract? There is a clinical trial associated with Theracurmin – NCT04499963 – Trial of Theracurmin for Patients With Amyotrophic Lateral Sclerosis (ALS)

 

 

[Mark S]

I have been taking Theracurmin.

It without a doubt changed GI function but I don’t sense any direct neuro-muscular effects.

I will keep taking it (less frequently) because any improvement is good.

 

[Jörg Dimmeler]

Was ist GI Funktion???

[Jean-Pierre Le Rouzic]

> Was ist GI Funktion???
Gastro-Intestinal
(Magen-Darmtrakt)

[Jörg Dimmeler]

GI Funktion Magen Darm… Ja da habe ich brutal Probleme immer steinharter Stuhlgang, da geht nix ohne Laxoperal oder Anorganischer Schwefel nur dann geht was.

Ich glaub langsam auch an eine andere form von ALS. Hab von Anfang an, die Diagnose in frage gestellt.

[Jean-Pierre Le Rouzic]

> Hab von Anfang an, die Diagnose in frage gestellt.

People with Parkinson disease have also severe constipation, and C9orf72 is also found in some people with Parkinson.

All these diseases (ALS, Alzheimer, Parkinson, FTD, Huntington, etc are not clear cut as in textbooks, each case is somewhere in a spectrum of diseases. One scientific article says that it’s common to have up to four comorbidities in people having ALS.

[Jörg Dimmeler]

Hallo Jean-Pierre

Na das sind ja keine tollen Aussichten.  Bis zu vier Komorbiditäten zu haben.