Viewing 29 reply threads
  • Author
    Posts
    • #19057
      SILVIA ARG
      Participant

      Please, tell me what are you using, together RILUZOLE

    • #19438
      Anonymous
      Inactive

      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.

      • #20564
        Bob Owen
        Participant

        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.

    • #19442
      Amanda
      Keymaster

      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.

    • #19459
      SILVIA ARG
      Participant

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

    • #19462
      Anonymous
      Inactive

      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

    • #19468
      Duane
      Participant

      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.

    • #19474
      Elizabeth Pacheco
      Participant

      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? 

    • #19475
      Paul Tavano
      Participant

      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.

    • #19483
      Bill
      Participant

      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.

    • #19484
      Mike Minardi
      Participant

      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.

    • #19570
      Mike Leist
      Participant

      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

    • #19573
      Scotty
      Participant

      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?

    • #19636
      Ken Erickson
      Participant

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

    • #19649
      Dagmar Munn
      Keymaster

      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

      • #19727
        Ken Erickson
        Participant

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

        • #19730
          Amanda
          Keymaster

          @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.

    • #19652
      Harvey
      Participant

      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.

    • #19692
      Gideon
      Participant

      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.

      • #19694
        Dagmar Munn
        Keymaster

        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.

        • #20567
          Gideon
          Participant

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

    • #19719
      Linda Lennon
      Participant

      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.

    • #19720
      Shawn
      Participant

      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

    • #20404
      Henry
      Participant

      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

    • #20429
      ASOKAN
      Participant

      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

    • #20442
      Andrew UK
      Participant

      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.

       

       

       

    • #20501
      Ann Thomson
      Participant

      What are good brands for Tudca and other supplements?

    • #20504
      Carol
      Participant

      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.

      • #20514
        ED
        Participant

        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.

    • #20516
      Jörg Dimmeler
      Participant

      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??

    • #20518
      NJGuy
      Participant

      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)

       

       

      • #20519
        Mark S
        Participant

        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.

         

        • #20530
          Jörg Dimmeler
          Participant

          Was ist GI Funktion???

        • #20531

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

        • #20534
          Jörg Dimmeler
          Participant

          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.

        • #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.

        • #20543
          Jörg Dimmeler
          Participant

          Hallo Jean-Pierre

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

    • #20520
      Carol
      Participant

      I don’t have any GI issues but just thinking about cumin or black pepper irritates my stomach and esophagus!

      • #20521
        Mark S
        Participant

        Carol, I was concerned about that because I have dangerous reflux and esophagial weakness but there must be something in the processing that makes it unlike a standard herb/spice.

         

    • #20522
      Sava Marinkov
      Participant

      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?

      • #20525

        In German’s Amazon there are two brands of TUDCA.
        In Netherland’s Amazon there is one brand: “TUDCA Liver Support”

    • #20523
      NJGuy
      Participant

      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?

    • #20524
      Sava Marinkov
      Participant

      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..

      • #20568
        Gideon
        Participant

        you can buy it on TheSocialMedwork

    • #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.

Viewing 29 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account