May 26, 2021 at 2:24 pm #19057SILVIA ARGParticipant
Please, tell me what are you using, together RILUZOLE
June 8, 2021 at 11:14 pm #19438AnonymousInactive
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.
September 23, 2021 at 1:05 pm #20564Bob OwenParticipant
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.
June 10, 2022 at 7:43 pm #22133Judy Silman-GreenspanParticipant
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.
June 9, 2021 at 6:49 am #19442AmandaKeymaster
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.
June 9, 2021 at 7:00 pm #19459SILVIA ARGParticipant
Thank you for your opinions. And what about antioxidants? I use vitamin C (2g), vit E (1 g) and niacina (25 mg) each day.
June 9, 2021 at 7:59 pm #19462AnonymousInactive
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
June 10, 2021 at 11:58 am #19468DuaneParticipant
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.
June 10, 2021 at 2:37 pm #19474Elizabeth PachecoParticipant
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?
June 10, 2021 at 3:20 pm #19475Paul TavanoParticipant
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.
June 14, 2022 at 6:50 pm #22154John McCormackParticipant
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.
June 10, 2021 at 7:46 pm #19483BillParticipant
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.
April 3, 2022 at 4:04 am #21732DavidWParticipant
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.”
June 10, 2021 at 8:16 pm #19484Mike MinardiParticipant
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.
June 18, 2021 at 4:18 pm #19570Mike LeistParticipant
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
June 19, 2021 at 9:49 am #19573ScottyParticipant
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?
June 23, 2021 at 11:42 am #19636Ken EricksonParticipant
I use Protandium NRF1 & NRF2 From LifeVantage. These supplements get free radicals, oxidative stress and inflammation out of the body and also protect cells.
June 24, 2021 at 12:10 pm #19649Dagmar MunnKeymaster
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 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. The manufacturers of Protandim claim it can prevent or cure a wide variety of medical conditions, including diabetes and cancer. 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.”
June 30, 2021 at 9:38 am #19727Ken EricksonParticipant
Well the FDA needs to take a better look at it.
June 30, 2021 at 10:19 am #19730AmandaKeymaster
@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.
June 24, 2021 at 3:23 pm #19652HarveyParticipant
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.
June 27, 2021 at 2:28 pm #19692
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.
June 27, 2021 at 3:48 pm #19694Dagmar MunnKeymaster
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.
September 23, 2021 at 4:25 pm #20567
She taking all this supplements for 4 years
just this year ALS symptoms getting more aggressive.
June 29, 2021 at 2:52 pm #19719Linda LennonParticipant
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.
June 29, 2021 at 3:46 pm #19720ShawnParticipant
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
September 3, 2021 at 6:00 am #20404HenryParticipant
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.
September 8, 2021 at 2:33 am #20429ASOKANParticipant
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.
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
September 10, 2021 at 7:36 am #20442Andrew UKParticipant
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.
September 16, 2021 at 12:46 pm #20501Ann ThomsonParticipant
What are good brands for Tudca and other supplements?
September 16, 2021 at 2:57 pm #20504CarolParticipant
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.
September 17, 2021 at 5:47 am #20514EDParticipant
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.
September 17, 2021 at 3:10 pm #20516
Das Habe ich auch versucht, nach dem ich das von dir Gelesen habe. Hat leider nicht Funktioniert.
wird vermutlich nicht bei jedem so sein??
September 17, 2021 at 6:20 pm #20518NJGuyParticipant
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)
September 19, 2021 at 9:40 am #20519Mark SParticipant
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.
September 21, 2021 at 11:51 am #20530
Was ist GI Funktion???
September 21, 2021 at 12:00 pm #20531
> Was ist GI Funktion???
September 21, 2021 at 1:30 pm #20534
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.
September 21, 2021 at 1:54 pm #20538
> 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.
September 21, 2021 at 3:19 pm #20543
Na das sind ja keine tollen Aussichten. Bis zu vier Komorbiditäten zu haben.
September 19, 2021 at 11:24 am #20520CarolParticipant
I don’t have any GI issues but just thinking about cumin or black pepper irritates my stomach and esophagus!
September 20, 2021 at 4:05 am #20522svarogParticipant
I would like to take Nutricost TUDCA and Theracurmin HP as in the trials, but having difficulties purchasing them in Europe. Does anyone know of any alternatives that are available in EU / Netherlands? Or ways to purchase and ship these from US in bulk? Where do you get your supplements from?
September 20, 2021 at 2:45 pm #20525
In German’s Amazon there are two brands of TUDCA.
In Netherland’s Amazon there is one brand: “TUDCA Liver Support”
September 20, 2021 at 10:05 am #20523NJGuyParticipant
Thanks Mark & Carol!
I have ordered Theracurmin, will soon receive that and will start. I am seeing actually good effects of just turmeric + pepper in warm water – three times a day. I am sure Theracurmin will be even better.
For any acid reflux / digestion issues, I am taking all natural Trifala churan (powder) – one tea spoon after dinner, this helps control acid reflux and helps clean up stomach. Any indigestion or GI issue really brings up bad microbiome (Dr Bedlack has talked about this in detail).
Sava, I normally order supplements on Amazon or get from local pharmacy like CVS. Do you have access to Amazon?
September 20, 2021 at 3:31 pm #20524svarogParticipant
It seems that Nuticost brand is not available in EU. I have access to Amazon.com (US site) and could buy it there but I’m afraid that it’s not allowed to get them imported into The Netherlands (EU). They may be withheld by customs..
I did find some alternative TUDCA brands though but none of them seems too legit (Brawn nutrition, Hepatica / DG Supplements, ALLMAX Nutrition).
I could on the other hand join the TUDCA clinical trial via TRICALS, but only in 3 months from now as I’ve just started with Riluzole..
September 23, 2021 at 4:50 pm #20568
you can buy it on TheSocialMedwork
September 21, 2021 at 2:01 pm #20539
> They may be withheld by customs.
TUDCA is not a regulated drug, it’s a supplement.
Yet you might have to pay VAT in addition to the Amazon public price.
May 20, 2022 at 2:29 pm #21983Bill KerrParticipant
i have px for PB/Tudca and was reciving it untill recently from a compounding pharmacy in NJ. they can no longer supply it anyyone inow of another source?
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