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    • #21553
      Dave F
      Participant

      Is anyone currently using clenbuterol to treat their ALS?

      I recently saw an interview on YouTube with Doctor Richard Bedlack of Duke University. He did a study on a small number of ALS patients (25) and has published a paper on that study. Bottom line: clenbuterol shows promise in maintaining muscle size and strength as well as respiratory function and this drug is worthy of more formal study. I’m interested in knowing if anyone has experience with clenbuterol for treatment of their ALS symptoms?

    • #21569
      Kathleen B (Katie)
      Participant

      Besides overall confusion about most things ALS, (as 8-9mo newly diagnosed) this concept of clinical trials and research into helpful items is the UTMOST mind-boggling!  While it seems to be that there are many things new study ‘treatments’ underway to help slow progression or help with some symptom or another of sporadic or familial ALS, the reality of this in the clinic setting seems nil.  I’ve only had a half dozen clinic visits, but each time I ask, the response is related to: these trials and studies will be helpful for the future persons with ALS, (not of present help); that nothing is FDA approved; that some things are really not showing long term to be safe or effective; or that criteria are difficult to meet for being a candidate, especially if a patient is on numerous supplements (no mention made of actual medications).    Is this what others are understanding? I find it hopeful to read the ALS News Today about all the promising things, and to follow the Forums also, but our population of pALS seems so small and widespread that I wonder if anything will come to fruition that might help those of us who are now in the trenches of this ‘neurodegenerative disease’ process.

      I DO hope this does not sound negative–it is not at all intended that way…just looking for a perspective idea from which to view the abundance of ‘possibilities’ information.  Thank you!

       

      • #21571
        Dagmar Munn
        Keymaster

        Kathleen, unfortunately, the answer to your question is “yup” – – no treatments, no cures, no possibilities on the near-term horizon. Your comment expressed exactly what I have felt for the last…. 11-years. I too, when first diagnosed thought, “well, if they can put a man on the moon, why can’t they figure out ALS?”

        But, I’ve been waiting and waiting. And realized that it would be up to me to take care of myself, to design my own rehab program, and to stick to it. Rather than wasting your valuable “health time” waiting for the next announcement of micro-advancements… I try to keep my mindset positive, support my body’s needs, and stay involved with life.

        The neuro system of the body is challenging to study. I accept that the medical experts are doing all they can right now. Meanwhile, we each can focus on the quality of our lives. Compared to others who live with other Rare Diseases, we still have control of many variables of our ALS condition.

        • #21688
          MaryConnolly
          Participant

          Dagmar-do you have a link to your ‘rehab’ program? I’ve subscribed to your blog and thought I saw something there, but alas I can’t find it. Thanks-Mary

        • #21735
          Dagmar Munn
          Keymaster

          Hi Mary, Sorry I didn’t catch your message earlier in this discussion thread 🙂 Explain to me a little more what you mean by “rehab program?” I’m happy to answer any questions you may have. Dagmar

      • #21659
        Margaret Walton
        Participant

        Our son has been on for 4 months. First 90 days it was around $800 for 3 months. Last time it was about $1,300. We are just blessed to just to have a dr to write prescription.

        • #21665
          Dave F
          Participant

          Were you pleased with the results after the first 3 months? I just paid a little over $1,200 for a three month supply. I’m waiting on delivery now.

    • #21572
      Kathy stitz
      Participant

      Kathleen, I understand your frustration and sometimes I feel angry at the doctors for not having a cure for ALS.  I agree with Dagmar that all we can really do is try to take care of ourselves mentally and physically as best as possible.   I’m not saying this is easy because it’s extremely challenging.

      • #21666
        Margaret Walton
        Participant

        Sell

        spme time my son thinks he can see a difference and other times not. Sometimes I have to feed him and other times not. I just know.

    • #21577
      Kathleen B (Katie)
      Participant

      Thank you Dagmar & Kathy S,   I appreciate your insightful perspectives–helpful in my situation as I will consider all the research & trial info more in light of ‘read-only’…good to know things are going on, keep a list for future perhaps, but not pursue or anticipate a ‘when’ factor.   INDEED, the daily challenges are enough…focusing on the quality of our lives is of much more help.  Yes, mental and physical health I am learning to have some better control over–thanks to these Forums and such useful information from pALS!

    • #21581
      Betsy Logan
      Participant

      Hi Dave. My father is a patient of Dr. Bedlack’s and once we viewed his video about Clenbuterol and discussed it further with him during our quarterly visit, my father decided to start taking it. He has been on it for about 4 months now and over the last few weeks, my father has made random statements that he feels a little better. I spend 3-4 days a week with him and I also have noticed random little things like he had a phone conversation that lasted almost 20 minutes (he usually cuts his phone calls off at about 10 minutes as he runs out of air). Our next appointment with Dr. Bedlack is early April so it will be interesting to see if there are any changes in his FVC test.

      • #21604
        Lisa Brown
        Participant

        Betsy, would you be able to start a new topic when you do have that next appointment and let us know the results?

        • #21626
          Betsy Logan
          Participant

          Absolutely! I would like to add that the dosage my father is taking is less than the dosage that was used in Dr. Bedlack’s prior study. Also, to date my father has not experienced any side effects.

      • #21630
        Nettie Burchfield
        Participant

        How are you getting the Clenbuterol?  Where do you order it from?

        • #21681
          Betsy Logan
          Participant

          Hello Nettie.

          Because this medication is banned in the United States, it must be obtained outside the U.S. Once we obtained the presription from Dr. Bedlack, we contacted The Social Medwork to help us with filling the prescription. The Social Medwork is a registered medicines intermediary and international pharmacy and they are experts in patient access. They will guide you and your physician to safely and legally access a prescription medicine that is not yet approved where you live. They do charge a fee for this service and I believe it is well worth it. Once we provide them with the prescription, it takes approximately 3-4 weeks before we receive the medication. Their customer service is excellent and I cannot say one negative thing about them or the service they have provided to us.

          There is a way you can have the prescription filled on your own through the FDA but I believe it is quite time consuming to do it. We felt that our time was better spent on other tasks and decided to use The Social Medwork as it was such a smooth and hassle free process.

          I highly suggest you do your own research to determine what works best for you.

          Betsy

      • #21637
        Will
        Participant

        Given Clenbuterol is – I believe – a high strength asthma medication, used, among other things, to widen the airways in horses, I think there’s a good chance it will positively affect your father’s FVC and breathing. Dr Bedlack’s study showed a 90% slowing of FVC decline (if I recall) in the participants that finished the course of 6 months. Wishing you and your dad all the best – Will

    • #21583
      Trevor Bower
      Participant

      We all want the silver bullet the shot of D5W to solve the problem. It is going to be tough since we really don’t know the cause.  I too am a patient of Dr Bedlack. I’m hoping it will be found or an alternative may be found. On a program last week they were showing remarkable microcircuitry to enable people with lost or severely damaged limbs get feeling and could operate the artificial limb through use of alternative circuits in the brain. The engineer started on this quest because his mother had ALS. She died but gave him the idea and inspiration for using other nerve pathways to overcome ALS. Wouldn’t that be wonderful.

    • #21584
      Lyle Davis
      Participant

      Thank you Dave F for starting this thread, and to all who have contributed. I too have watched Dr. Bedlack’s interview regarding Clenbuterol (twice) and I am very seriously considering adding it to my regimen. So I am very interested in learning everything I can about other people’s experiences and perspectives with and about it.

      March 30 will be the two year anniversary of my ALS diagnosis (just a couple weeks after Covid shut the world down, thank you very much!)  Kathleen, welcome to the club – it’s definitely a club that none of us wanted to join, but I can assure you it is populated with lots of truly amazing people and lots of support and learning and wisdom. I am fortunate enough to still be doing quite well, and especially after a very rough first few months have stabilized to a very slow progression. My most pronounced effects are bulbar (noticeably impaired speech but I can still speak completely understandably, and eat normally, just much more slowly) and upper body muscle loss (hence the special interest in Clenbuterol) and much diminishment of strengthen and dexterity in my hands.

      As others have expressed, we all resonate with your frustration at how little is available now and how much of what appears promising is in the pipeline for somewhere in the future… but what about now?

      Part of why these forums and Dr. Bedlack and others are so incredibly important, is that they offer hope and wisdom and possibility beyond what the conventional medical establishment is able to provide, while helping to avoid the snake-oil and quackery that preys on the desperation and bewilderment that can come with confronting ALS. I am fortunate to live in walking distance to a terrific ALS multidisciplinary clinic and work with a great team there. However, they are in many ways restricted by all of the constraints that others have written and spoken of. For that reason, I also work with a functional medicine doctor, and I truly credit my work with him for much of my wellness. My work with him really helped improve the gut issues I was experiencing, and made real progress in alleviating my fatigue. If you have the resources to work with a good functional medicine doctor, I would encourage you to check it out, as they can complement and go beyond what you’re able to do in the conventional clinic. I also do mild yoga, work with a massage therapist, and lately with an acupuncturist, and find these to be helpful.  Others in these forums have shared a lot of great advice and ideals for self-care, and we can all continue to grow and evolve our self-care programs in an ongoing way.

      Thanks again to all who contribute here.  I’m especially hoping for more input regarding Clenbuterol, and looking forward to all the other ideas and experiences that are shared here.

       

    • #21585
      Louis Savarese
      Participant

      Hi Dave and all others on this thread,

      I have scheduled my first appointment with Dr. Bedlack in the end of July.  The YouTube was very convincing since the results in the Italian study and his both had positive results. I find him compelling and compassionate which is so important.  No one wants to feel like a data point.  I also receive great care at Robert Woods Johnson Rutgers Clinic.  Dave keep the faith you will be you forever.  This disease does not define you.   I first started noticing problems with annunciation in December of 2019.  I took almost a year of EMG’s, and specific blood tests to rule or Myasthenia Gravis to finally get my diagnosis of Pseudo Bulbar Palsy.  Fast forward to today and my speech has worsened and I have wasting and weakness in my right hand.  I think my regiment of 27 capsules each morning and a dozen at night may have helped with my slow progression.  My Dr. at Rutgers suggested Tudca of which I take 750 mg 2x a day and Dr. Bedlack’s suggestion Theracumin 2 a day one in the morning and one in the evening.  The balance of my supplements are:

      Balance of Nature Fruits and Veggies 12 per day 6/6

      Resveratrol 250 MG daily

      D3 5000 IU daily

      CBD 100 mg liquid daily

      Lion’s Mane 2100 MGS

      Alpha Lipoic Acid 600 mg daily

      Selenium 200 mcg daily

      Magnesium 500mg daily

      Odorless Garlic 500mg 2x a day

      Vitamin C 1000mg 2x a day

      B12 1000mg daily

      Asprin 81mg

      Agmatine 1000mg daily

      Centrophenoxine 300mg daily

      Beta-Carotene 7,500 mcg daily

      Lutein 20mg

      Dave keep the faith the sun is always behind the clouds

      Wishing all on this thread all God’s Blessings

       

       

       

      • #21593
        Dagmar Munn
        Keymaster

        Louis – – that is one boatload of supplements you are taking. Not to mention the monthly expense you are spending to maintain that sort of regimen.

        For comparison’s sake…

        I am entering my 12th year of ALS, managing pretty well – – walking with a rollator, speaking slowly, and use a thickening powder in beverages. And I don’t take any supplements at all.

        My point is, supplements are not always necessary, many are hearsay and promoted by the manufacturers, and I believe taking mega-doses can stress the body’s organs (having to eliminate them daily) doing more harm than good.

        • #21596
          Duane
          Participant

          That’s a very good point! While I believe in taking a few supplements to provide what our daily diet may not (especially minerals ), I like you have lived with this disease for many years without adhering to a plethora of supplements which may do more harm than good.  Drinking an Ensure is a “supplement” which many people use.

        • #21631
          Doug Frazier
          Participant

          Dagmar: do you cover your dietary plan in other posts I could check out?

        • #21641
          Dagmar Munn
          Keymaster

          Doug – – sorry, I didn’t see your question until now.

          My dietary plan? I eat normal foods… meaning I eat anything and everything (but not liver… I hate liver!) haha

          Typical day:
          Breakfast: large coffee, fruit smoothie
          Lunch: meat sandwich (chicken, beef, or tuna), ice tea
          Dinner: meat, potato/rice, vegetables, ice tea, cookie

          I enjoy an occasional pizza, cheeseburger, Burrito Bowl from Chipotle, BBQ ribs, etc.

          …oh, and I take Riluzole 2x day.

          My point in sharing all this detail is that there is no magic diet or food group that makes ALS go away. Rather, we should eat healthy foods and a variety of them in order to support our body as we live with the condition of ALS.

        • #21633
          Doug Frazier
          Participant

          .

        • #21643
          Doug Frazier
          Participant

          Dagmar:

          I appreciate the details. I am a newcomer to ALS. It was nice to see your normal diet having such good results for you.

          Doug

    • #21590
      Duane
      Participant

      I think Dr. Bedlack is grasping for  straws like the rest of the research community. I don’t agree with him as to Clen.  Here is an article about its dangers written by  Leslie A. McCament-Mann, PhD, RPh
      Clinical Toxicologist

      https://www.poison.org/articles/clenbuterol-unapproved-and-unsafe-201

       

    • #21605
      Lisa Brown
      Participant

      Has anyone asked Dr Bedlack about the side effects of Clen?

    • #21609
      Duane
      Participant

      All you have to do is read to find out its side effects.

      • #21629
        Lisa Brown
        Participant

        I was wanting to know Dr Bedlacks opinion re side effects.  He already knows that the dosage was way too high in the trials and perhaps the lower dose alleviates the negative side effects?

    • #21614

      This is my first time participating in this forum.  After reading about these trials, I feel that my husband, who has ALS  , would not be helped by going into the third phase of a trial.  He may be offered a spot in the Reldesemtiv ( cytokinetics) trial phase 3 and I have gleaned from everyone’s responses, these trials are really for the next generation and probably won’t help him.  The trial is 4 hours away and now I’m not sure I should put him thru this. HELP

    • #21619
      Duane
      Participant

      Lynn, a lot depends on your husbands condition and level of energy, since a trip like that would be tiring for those who don’t have ALS. Also the benefit of the drug (if any) needs to be weighed.  Many drugs fail  at the third trial, and the few that pass have to go through the process of a final approval.  What does your husband think about it?

    • #21620
      Dave F
      Participant

      Thank you all for your replies to my post on clenbuterol. Lots of food for thought here, so much so, that I have gone from “ready to jump in” to “back on the fence” in a week’s time. The neurologist on my care team has kindly offered to do a review for me on Doctor Bedlack’s “un-trial” and the subsequent paper before I decide how to proceed. Other cool things that I’ve gleaned from the replies above: supplements, yay or nay, and “I don’t want to feel like a datapoint?.” Doctor Bedlack definitely comes across as a very compassionate and empathetic man. My wife and I sometimes talk about how emotionally difficult and draining it must be for providers who work in the world of ALS.

    • #21621
      Duane
      Participant

      Another thing about taking many supplements and meds is what they  may do to your stomach.

      • #21632
        Doug Frazier
        Participant

        Duane:

        I was having stomach issues with Riluzole. What finally eliminated all the stomach issues was two things:

        1. Eating half my meal, taking the Riluzole, then eating the other half of the meal. It also seemed that some amount of grains in the meal was important. For example, if I ate only vegetables, fruit and nuts but no grains, I could still have some issues.

        2. If I forget to take it halfway through the meal, I take it after and then eat a piece of buttered toast.

        Hope it helps.

        Doug

    • #21638
      Duane
      Participant

      People can and do what they want regardless of the risks involved or whether it is trialed adequately. I don’t care what a Neurologist who is popular with the ALS community says about it or a trial in Italy shows unless there are valid trials that are peer reviewed. Here is another article with good information:      https://www.medicalnewstoday.com/articles/319927#risks-and-side-effects

      • #21654
        Lisa Brown
        Participant

        This article is from 2017.  Note the side effects are due to high doses of Clenbuterole.

        ”The effects that clenbuterol can have on the heart and muscles will depend on how high a dose someone has been taking and for how long. The risks increase with the dose and duration.”

        Even Dr Bedlack noted the dosage used in his open label trial and has recommended a lower dosage starting at 10ugm then up to 20ugm.

        The key is to know and understand your body and be prepared to stop taking anything when your body is disagreeing with it.

      • #22744
        Robert
        Participant

        Hi Doug, I am little confused. I was directed to take Riluzole twice a day, one hour before or two hours after a meal. You take it with meal. h

        How has it been working for you?

        • #22745
          Doug Frazier
          Participant

          For Riluzole, my instructions are only twice per day, with no mention of food timing but I checked on Mayo’s site and you are correct. I will check with my doctor and let you know if the directions I received were on purpose or not and let you know.

        • #22811
          Doug Frazier
          Participant

          Robert:

          My doctor confirmed that you (and the Mayo site) were right and that my bottle label was wrong about not taking Riluzole with food. So, thanks for taking the time to reply initially.

          The site also said not to chew the tablet which I was doing because of difficulty swallowing. My doctor then prescribed the liquid form. It is much more expensive ($150/month vs $4/month).

          Out of curiosity, I dropped a riluzole tablet in water and it fully dissolved in 90 seconds, showing that there is not a time release or other special coating involved. This should mean that chewing the tablet should not be a problem.

          I wrote my doctor about this today and will let you know if anything useful turns up.

          Thanks again.

           

    • #21655
      Bill
      Participant

      I too am really interested about future of Clenbuterol use although huge drop out rate due to side effects was concerning. I read comments in so many forums of people looking to copy others supplements. I’m with Dagmar in using very few basic “supplements”. My blood tests revealed borderline on a B12 and D so I supplement. I take Theracurmin because of Dr Bedlack comments but kept on as it helps my arthritis pain ( or so I think).
      People look to copy not knowing anything about nature of others ALS, UMN vs LMN dominant, initial presentation, progression and symptoms. I advise anyone to research before just ordering something someone takes. I think Dr Bedlack site is a good resource. I’m 4 years past diagnosis and likely 7 or 8 years with disease.

      • #21673
        Lisa Brown
        Participant

        Bill, can you post a link to the site you are referring?

    • #21690
      Duane
      Participant

      Bill, I’d like to know more about your statement “Clenbuterol use although huge drop out rate due to side effects was concerning”. Is there an article explaining this?

      • #21692
        Bill
        Participant

        Lisa  one place I read about supplements is Alsuntangled.  It’s a site from Dr Bedlack at Duke.

      • #21691
        Bill
        Participant

        Duane,

        search Dr Bedlack and Clenbuterol. He does a YouTube slide show and talks of this. not sure if this  link will take you there.

    • #21693
      Duane
      Participant

      Lisa, Of course dose and duration are very important factors, but I think that relying on your body to give you a signal is not wise with a toxic compound like this.  What if there is no efficacy but it damages organs and that damage is not known for a few years?  Is it carcinogenic?  And although that article is not recent, it still applies today. The drug has not changed and there is more recent information although nothing concerning it has changed. Perhaps Dr. Bedlack’s low dosage will be well tolerated by most but it is an unproven treatment. I know some will say it helps them (or so they think) since the placebo effect is a powerful thing.

      I have witnessed a whole lot of nonsense since 2006 the start of my ALS.

      • #21706
        Lisa Brown
        Participant

        Duane, I totally agree with you. I have recently been tested by a naturopath and found multiple  * points to work on – eg: high mercury, low zinc, unhealthy liver….Which is very frustrating as I had my bloods tested fully including toxins through my GP which found everything OK.

        I tried ropinirole as a trial was promising, however I stopped it due to side effects. I have clutched at straws in the past and came to the conclusion that not knowing exactly what form of ALS I have that I would have to back off and focus on natural therapies.

        I use the ALSFRS scale to monitor my condition in addition to photographs  of atrophy and personal diary (which I am not good at keeping up to date – life just seems to whizz by atm).

        I will be trying Clenbuterol if I can get it into NZ, but I will also be monitoring myself and through naturopath tests. If I can continue racing my classic bike for the next three years with the help of a drug, I will be very happy.  Right now I am at the stage of choosing go/no go and that is affecting my mental health.

    • #21712
      Duane
      Participant

      Lisa, for the first six years with this I sought nothing to do with ALS. I just continued to live the best I could. I have always avoided thinking about it with a few exceptions. I believe avoiding it mentally can only help. I’m in the U.S. and the health system treats you as you WILL BE an invalid soon and will be totally dependent on others for everything. They don’t seem to accept that there are variations with this disease. In my case it has been very slowly eroding my abilities but I can still physically move around but need help with some things. On the advice of my Neuro I agreed to a PEG tube. That was about 5 years ago and I have never used it.  I don’t visit the ALS team any longer due to Covid and the fact that they can only evaluate you with their opinionated view and really can’t do much about it. I have found that most of the tests they perform only tell me what I already know. It is a big business like Google or Apple. They also don’t understand that age has a lot to do with how you do on a daily basis. I am nearing 80 years. Keep your spirits high Lisa, don’t let anything get you down.

      • #21713

        It’s a beautiful writing, Duanne.

        • #21714
          Duane
          Participant

          Thank you Jean-Pierre for the compliment!

    • #21729
      Angelo Venosa
      Participant

      Hi, my 2 cents on Clenbuterol. I also was thrilled by Dr. Bedlack’s video on Clen trial.

      In my country, Brazil, it’s only allowed for animals, then I resourced it in Italy where its used for asthma, its called Monores. A friend brought me some, each pack has 20 tablets, 20mcg. I started taking 10 mcg 3x a day. After few days I had a horrible cramp at my tongue and throat. I thought Clen was to blame. Stopped taking it.

      (apologize my crippled English)

    • #22755
      Bill
      Participant

      Just listened to the video. 68 % of those in the test where on Riluzole.

      Anyone know if these on Riluzole did better then thoses not?

      Thank you for your help.

    • #22756
      Kathleen B (Katie)
      Participant

      Hello again—more interesting reading, and astounding amount to ponder! Kudos to Duane for being nearly 80!  with ALS!  I have notes I the ‘supplements thread’ what I take and why—I am exceedingly careful due to allergy & family immune system disorder issues, so have always worked with a knowledgeable primary care doctor who was BOTH western & alternative medicine trained—AND willing to listen & be totally honest in giving me both sides of things I asked about or shared from reading.  (Yes, I did search for a Dr. many times).
      I will offer another perspective now:  I was immersed in the world of Autism Spectrum Disorders for 30+ years as an educator.  Essentially since it had no ‘label’ until it became a household term of vast proportions!  However, it remains a ‘neurological condition’ for which there is no specific cause & no ‘cure’.  Therein is my parallel universe connection.  Granted it is not a deadly disease like ALS—my point is that since the early 1980’s it has been studied an a MYRAID of ‘treatments’ have been developed and tried—and INDEED there was progress I some subgroup of persons with autism for most of the therapies.  But nothing for all.  Similar to this ALS condition—seems we are a collection of ‘subgroups’ as well—things work for some but not for all.  What I did learn also over time: EARLY intervention for autism spectrum disorder individuals made the MOST SIGNIFICANT improvements in functioning. This I also see as the future in ALS—if research and clinical trials can find things to use early—and diagnosis can be accelerated as well—then maybe the playing field can level for pALS.  That is my hope and prayer for all of us.  We can be safe and well in what we do—we are likely the most aware of our body functioning group on the planet!

    • #22837
      Nancy Mueller
      Participant

      My wife Nancy took 10ug tid for 3 months. She was then off 2 months while we were trying to get the refill from Amsterdam. Nancy did not have any side effects, but I am not sure I saw much improvement. Maybe the dose was too low so I may try increasing the dose to 20 ug.

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