A friend shared a story with me earlier today—it was a quote from something amazing that one of her friends wrote. She told me: “I watched my friend become a shadow of himself and it was scary thinking this young, big, strong guy was going to die.”
The story took my breath away and I asked if I can share. I was granted permission—I am not providing names or places, only the experience. There are several reasons for publishing this story and an article. We need to call attention to a huge knowledge gap in our healthcare industry. This knowledge gap also killed my mother and even though I had the requisite knowledge to prevent her death, the physicians ignored me. The medicine killed her even with my knowledge. There was noting I could do against the force of an industry that doesn’t care; where doctors are permitted complete ignorance. In this story, the participants had the suspicion that it was the medicine, but they were told repeatedly by their doctors that their suspicions were nonsense.
I should note that there are several lawsuits against the makers of Cymbalta. Some have already settled, while others are still ongoing.
The Story
“I am sharing this story because I firmly believe that my husband is not a medical anomaly. He is not the only person to get rare side effects from the medication Cymbalta (or any medication for that matter). My hope is that someone reading this may recognize some of these symptoms that are not associated with Cymbalta [on the label] and just maybe they won’t lose nearly a decade of their lives chasing a undiagnosable disease.
In late 2011, my husband injured his back. In January 2012, he was prescribed an antidepressant, Cymbalta, for the associated nerve pain and headaches he had (off-label use). Shortly after taking the Cymbalta, he developed a facial tic and uncontrollable muscle movements in his right shoulder and arm.
It was assumed by the doctors and many neurologists that rather than having injured himself, he had a neurological problem and the “injury event” was the beginning of the disease. As time progressed, his condition progressively deteriorated. Every MRI, brain scan, blood test, spinal tap, sleep study and every other test performed came back normal. The “disease” affected every part of his nervous system; his brain, spinal cord and nerves.
We were told that most known neurological diseases affected only one branch of the nervous system. The closest we got to a diagnosis was when one neurologist said he believed that my husband had one of three rare, progressively degenerative neurological diseases that could only be diagnosed post-mortem with brain biopsy. We were told to expect the disease to continue to progress at the rate it had been and that he would likely develop early onset dementia.
He suffered from debilitating dystonia. His muscles would pull and twist so hard in the wrong way that he often dislocated his shoulder, elbow, or wrist. He suffered from two types of seizures: Grand Mal and Focal seizures. He would go for weeks to months at a time without mentally being aware of the lives going on around him. There were times he didn’t recognize me and other times he had no idea where he was.
He went through periods where he slept 75% of the time. He often fainted during these episodes of mental confusion. He recalled nothing of these periods after they occurred. He occasionally would get both auditory and visual hallucinations. At times his left eye would wander. He developed a condition called nystagmus where both his eyes would vibrate rapidly from side to side. He would occasionally wake up paralyzed and remain that way for hours all the while being completely aware. He was often wholly dependent on me.
I asked every neurologist we saw about the Cymbalta, but each one assured me his symptoms were not associated with the medication. After years of seeing specialists, my husband had given up on finding a name for what he had. His last straw was a neurologist telling him he was somehow creating all the symptoms in his head and he should see a hypnotherapist. In 2017, I finally asked our primary care doctor about the Cymbalta and he suggested we taper him off and find out.
He was tapered onto another antidepressant, as he was understandably depressed at this point. Prior to stopping the Cymbalta, he would get multiple rapid onset sharp headaches a day that caused bleeding from his right ear, eye and nostril. The first week off the Cymbalta he didn’t suffer from a single one of those headaches. Very slowly, over the course of the following year and a half every single symptom disappeared.
The drug companies are not aware of every symptom associated with a particular medication when it is released to the public. If the pharmaceutical companies do not know all the side effects, then the specialists meeting with patients certainly don’t know to look for them. Today we are beyond grateful that my husband has seen such dramatic improvements, but we can never get back the lost years.
As we now look into the next phase, I see so clearly all that has been lost. The emotional toll on our little family has been enormous. From the years of memories that were never made to the financial hardships that illness creates. We can never get those years back and that makes me especially sad for my children. We are in the very early stages of dealing with the consequences of the illness. He has nerve damage along the right side of his body that will require a great deal of physical therapy. He does not remember much of the last 8 years. He has spotty memories of the kids as they grew older. When he looks in the mirror, he does not recognize himself as he expects to see his younger self.
I recently reported all the side effects to the FDA, I’m hopeful that sharing our story now will help someone before they too lose years of their lives. Every medication has side effects, and many are not known.”
WARNING: Do not quit Cymbalta or any medication cold turkey or without the permission, knowledge, and instruction of your medical provider. Some medicines–including Cymbalta–have severe “discontinuation syndrome” (withdrawal), which in some cases can even lead to fatality.
I hope this story took your breath away as it did mine. My intention of sharing this is to create some changes in how medicines are tested for adverse reactions, how they are prescribed, and how much doctors should be required to know about the medicines they prescribe.
To Do’s For The Medical Industry
- Medicines are often very harmful, regardless if they are prescription or over-the-counter medicines. Admit the danger and prescribe with warning attached.
- People who have adverse reactions should take a few minutes out of their lives and report every single adverse effects they find to the FDA here. The FDA cannot read minds. The FDA needs to have all people report every little thing they find wrong with whatever medicine, vitamin, supplement, or herbs they take.
- Medicines are often prescribed off-label. Off-label prescription is a medicine prescribed for something other than what it was tested and FDA approved for. This means that people who receive an off-label prescription are volunteering to be experimental subjects without consent.
- Patients who receive off-label drugs are not always told that the drugs they get are off-label, but even if they are told, they often don’t know what that means. The prescription of a medicine off-label should be illegal.
- Doctors should memorize the adverse effects of the medicines they prescribe better than the names of the drugs they memorized in order to prescribe them.
- Doctors should be required to take a course each year that updates them on all adverse effects—real adverse effects that real people report to the FDA and not only those that the pharmaceutical companies report after their clinical trials.
- In clinical trials people are selected based on the least likelihood for adverse reactions. Therefore, the pharmaceutical companies, by definition, underestimate the side effects of all medicines they create. Clinical trials should require the inclusion of subjects that represent the general population with all their health conditions and interacting medicines. All adverse reactions must be included in the adverse reactions list.
- Clinical trials remove people in an evaluation phase who develop any adverse reaction to the drugs under testing. The adverse reactions for which these subject were dismissed are often ignored and are not reported as part of the final adverse effects that go on the label of the medicine. All adverse reactions should be reported from all parts of the clinical trial and all should be noted as adverse reaction on the label.
- Doctors should be required to pass a test on adverse reactions to each new drug every single year, where the test is created and overseen by an independent expert group that collects all reported adverse effects from the FDA database.
This is not a comprehensive list; it is only a start. Feel free to send me your recommendations and I will update the article.
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This article was published originally on February 28, 2019.
One last thing… all my muscles turned to mush after going off cymbalta? or onto the lexapro? or the serotonin syndrome? I don’t know but my arms and legs are like jello????
Dear Jennifer,
Muscle tremors, jerkiness, and weakness are side effects of taking Cymbalta and also of Lexapro. Both Cymbalta and Lexapro are serotonin inhibitors. Lexapro is an SSRI and Cymbalta is an SNRI. Both can cause serotonin syndrome. However, if you have serotonin syndrome, you would have much more symptoms. Read my article on serotonin syndrome here. You will see a long list of symptoms and getting muscles like jello is not one of them.
I recommend you contact your doctor and see what can cause such sudden muscle failure. I don’t have your whole history so I cannot even guess.
I hope you recover fast,
Angela
I’m sorry about the husbands experience and I believe that all of this happened. I just wanted to comment though, that dystonia is not neurodegenerative. Yes it can be very disabling, and depending on the type some are more severe than others. I have been living with dystonia for 17 years, and am an advocate for it.
J.C.W., thank you for your answers. Correct, dystonia is not neurodegenerative but on the flip side, it can be a symptom of a neurodegenerative activity that can cause dystonia.
I hope this makes sense. So everything needs to be checked.
Best wishes,
Angela
I am writing in desperation. My daughter 19 years old), was on Cymbalta for 5 years for her depression. She was tapered off of it quickly while simultaneously starting Prozac. We had done these type of medication changes in the past without any issues. However, this time was very different. She was taken off at the beginning of June. She suffered greatly with fear, anxiety, panic attacks, as well as other physical symptoms. We initially thought it was serotonin syndrome. We soon did our own research and discovered it was Cymbalta withdrawal. Now we are dealing with Cymbalta Discontinuation Syndrome. We have seen several psychiatrists, but none of them seem to understand. We are now looking into seeing a neurologist. We have also seen a holistic practitioner without any success. Her quality of life has forever been diminished. She is unable to participate in everyday activities, such as outings with family or friends, going to college, and having a job. I will continue to do my best to find her help. She has lost hope at this point. Thank you for allowing me to vent.
Sincerely,
Cindy S.
Dear Cindy,
I am so sorry to read about your daughter. It is very well known how difficult it is to taper off of Cymbalta–the taper can take over a year. There are Facebook groups that teach how to taper off Cymbalta. I have never taken Cymbalta and have no intention to, but I know many people who are tapering off of the methods suggested by these Facebook groups. They basically open the capsules and remove a single bead at the time and taper VERY slowly.
If I were you, I would ask to have my daughter put back on Cymbalta, get her to stabilize back to normal, and then taper very slowly. I normally always recommend to listen to doctor advices but when it comes to tapering off of some of these medications, I am afraid doctors follow pharmaceutical companies instructions, and since they have zero benefit from anyone tapering, their schedule will lead to an impossible situation where the patient must return to taking the medicine. This is their only ay of survival.
It is now also starting to be understood that these medications don’t work for depression. I recommend that your daughter follow this person: Mikhaila Peterson, the daughter of a very prominent professor in Canada, who had severe depression from childhood and a host of other very serious autoimmune conditions, including various replacements–I think hip and ankles by the age of 16, and who tried every medicine under the sun. What she found is that what worked for her, and by now for millions who follow in her footstep, is to eat only (100% only) red meat. She has literally not eaten anything else by beef, because at any time she wants to add as much as a salad, she ends up paying for it with pain and mood disorder. but as long and she eats nothing else, she is fine.
There are literally millions of people eating this way now. Even I was eating this way for about 8 months, and the outcome was that all my health conditions fully healed–including a very serious asthma, for which I took a ton of medications and inhalers, and now I ma taking zero medications and zero inhalers–been off now for a year. I also used to have severe panic disorder (GAD–general anxiety disorder) and I discovered that the taking of TTFD type B1 completely cured me. TTFD type B1 are only a few kinds on the market: Allithiamine, Lipothiamine, and Thiamax. these are all available on Amazon in the US. Don’t try any other kinds, they don’t work.
Best wishes to you and your daughter!
Hugs,
Angela
Hello. I have contacted a place called Point of Return who is helping me come off Cymbalta safely and with minimal withdrawals. They have a complete program and have been wonderful to work with so far. They are very knowledgable and have helped thousands of people successfully get off antidepressants. I hope this message reaches you and it can help your daughter.
Hello!
I hope I am not too late to leave a reply.
I was prescribed duloxetine in December 2021 because we thought my other antidepressant was causing TD. Within a few days of taking it, the muscles around my neck began to tighten and I could not lower my head. My doctor told me to slowly taper off, but because I had only taken it one month and because I was scared I stopped cold turkey.
It was horrible. My neck froze completely and I could not lower my head. I vomited daily, had tingling in my hands, constantly dizzy and my depression and anxiety got so much worse.
I am now at the two month point of being off it and my head is lower and I am feeling a bit better.
I guess in a way this experience was my fault, but I wanted to comment when I went to the doctor the first time with my head issues, she literally pulled up something about the drug on her computer and started reading! Then she said, “Oh that’s a side effect we don’t want, so you better stop taking it.”
I was so upset she didn’t seem to have a clue about the drug she prescribed me.
Dear Meg,
No one is ever late in posting a response to any article on HormonesMatter!
I am very sorry for your scary experience! Hopefully you are on your way to a full recovery. Cymbalta is a horribly difficult drug to stop taking.
In terms of your doctor: look at the bright side! At least she looked if what you had was listed as an adverse effect of the drug! She cared enough to look and didn’t feel embarrassed that she didn’t know.
She is actually a good doctor and I recommend you continue to have her as your doctor.
I would say that at least 60% of other doctors would not have looked the side effects list up and would have said “it’s not a side effect, it must be caused by something else” or “it will go away after long-term use” or something similar. And that would have been a tragedy for you.
So you have a super great doctor who cares!
Don’t blame her for not knowing the side effects. She should have looked it up before prescribing it to you, but some medications have such long list of side effects, that it’s impossible to remember all.
Best wishes to your recovery,
Angela
I am on 60 milligrams and 30 milligrams of cymbalta plus gabepentin 600 milligrams in wondering my side effects I have been on them more 12 years when I had my first neck surgery I have nerve damage and severe weakness in my arms.im very depressed I take annex for my severe anxiety I haven’t made my Dr appointment so my Dr won’t fill my prescription until I go in. with the covid my daughter got it my son got it and her girlfriend died from it I been self quarteen and afraid to go anywhere even to the grocery store
Dear Nancy,
I am very sorry about what has happened to you. Do you have a question I may help answering for you?
Best,
Angela
I am on duloxetine 60mgs a day. I have very dry mouth each day. I am drinking more water . My eyes have become very blood shot, I took antibiotics, prednazone, and use artificial tears with no preservatives, They get full of yellow mucus and this has me scared. I went to my opthamologist yesterday and he can only figure dry eye and put a plug in one.. as I walked to the car it hit me, with severe dry mouth, it is most likely affecting my eyes too. Drs don’t always put medications as the culprit, but how could they , there are thousands that people take.. we have to do our own research.. just smart business. The problem is this medication has worked wonders for my fibro pain.. it became extreme after the second covid 19 shot. Really don’t know what to do. MY family doctor would put me on something else, but today I only took 30mgs to see if that might help and still kill the pain.
Dear Brenda,
Thanks for your note. You know, I have a fibro group on Facebook here and I found that fibromyalgia responds amazingly to the same protocol I use for migraine. And it makes sense since both are trouble with the nerves and sensory organs. I would recommend you join that group or my migraine group directly, which is here, and start to apply what we do. We had many members with fibromyalgia get complete relief from flares and already came off of all of their medications.
So join us, and you may end up beating all the bad things: dry mouth, dry eyes, etc. 🙂
Best wishes,
Angela
I just started taking Cymbalta less that a week ago (have taken 5 days at 30 mg) for the treatment of my “idiopathic” Small Fiber Neuropathy. This article is very alarming and has me stopping in my tracks. As a healthy person 56 year old (I suffer hypothyroidism and take HRT in the form of pellets) who has prioritized health and avoidance of chronic disease, my diagnosis has taken me to a very low place of what would be stated as clinically depressed. So it made sense to try Cymbalta as the next step for helping mask the symptoms and improving mood. Originally I was on Gabapentin, a low dose of 300 mg 3 x daily for about 2 months, but I had undesirable side effects including tremors, heart racing, itchy red skin and perhaps it also included my depression. When looking up Gabapentin side effects, I definitely felt some of them. In the last week and a half, I started taking serequel and trazodone to aid in my massive lack of sleep and panic. Now that I am getting better sleep, I feel my mood has improved and how could only 5 days of an antidepressant work when they say it takes 2, 3 to 4 weeks to see improvements?
In the early days of my symptoms, which came on out of nowhere in September, I presented with a deep rooted itching in a pinpointed place on my shoulders that attacked me at 2am in the morning for a week. The only thing that would take the agonizing itch down was ice (did prednisone with no help). As weeks went by I started having what felt like strings around my toes and I began to feel every seem of my upper body clothing. I still do most days. It is a heightened sensory issue. The pain in my feet has progressed to all areas of my feet and into my hands with some numbness too. In the beginning, the neurologist intimated that I was just stressed. A skin biopsy proved otherwise and after all the bloodwork, they determined I have no know cause for the neuropathy even though my B1 level is below the standard range at 5.8 noml/L and the range is 70-180 nmol/L so hardly optimal. And is this test truly the best for determining B1 status? When I asked the neurologist how they treat B1 as a cause, they said a B complex. WOW, not very innovative. No one ever asked about my diet, which is heavy animal based with non oxalates veggies as I make kidney stones. From my research I found that all the B vitamins work together and perhaps my diet devoid of most plants with no heavy hitter B vitamin foods, has something to do with my diagnosis. Plus this came on suddenly – 36 hours after a hair dye session with a new formula so I suspect a toxic assault set me off. And I did another dye appointment 4 weeks later before I connected the dots.
I started an all encompassing protocol with my functional medicine doctor, sent my saliva to a genetics company (Stratagene), and will be taking an organic acids test and tox test through Great Plains to better understand my situation.
So here I am, reading this article, remembering how I get side effects from most pharmaceuticals (especially SSRIs from prior years) and that I have developed an afternoon until bedtime headache for the last 3 days. (I cannot take pain relievers due to tinnitus nor do I want to).
I am contemplating stopping the Cymbalta before my whole life gets hijacked in order to mask symptoms. Once the test results get back I will have more information to adjust my nutritional and supplemental protocol. There just has to be a reason that I have small fiber neuropathy and I know the body has the ability to heal. I have little faith in the western medical establishment at this point.
I would appreciate any insight or feedback. Thank you.
(How coincidental that I saw Angela in a YouTube interview just this morning on Nutrition with Judy!)
“they determined I have no know cause for the neuropathy even though my B1 level is below the standard range at 5.8 noml/L and the range is 70-180 nmol/L so hardly optimal.” You are severely deficient in B1 – thiamine. Please read up on thiamine deficiency on our blog. Most of your symptoms, if not all, can be attributed to this deficiency.
Hi Chandler,
Yes I thought I was low in B1 which is why I discovered your very well done website. I have been absorbing the info for weeks and implemented allithiamine and Benfotiamine as part of my supplementation protocol which includes more than magnesium and some other b vitamins. I plan to keep increasing the dosage over time to reach optimal levels. I feel vindicated by your comment that I am severely low in B1. It gives me hope! Thank you!
Beth
Dear Beth,
I feel your pain. I also have small fiber neuropathy and for years I had no idea what it was called, but I had many of the symptoms you have. I bumped into it some time ago. I recommend you read this article on it, which describes the current understanding on this. This is a genetic condition, and so there is no such as a “cure” per se. It is interesting to note that mine was so bad for many years that I was unable to walk bare foot even at home on the carpet, let alone wood or tile floors. It just hurt way too much. I also get the itch–usually as I retire to bed. The important thing to understand is that not everything can be fixed with the proper diet and the proper nutrients, and though they may help, they may not reverse.
I personally see no point of taking a medication that I know has no cure and which is not likely to kill me–other than just cause pain. I think that we need to sometimes “reframe” the question and also the problem itself: is it worthy for me to cause harm for the whole body by taking a drug unrelated to my condition just to potentially reduce a pain I feel that is not excruciating, though bothersome, and the itch definitely can drive one mad. I have tried all the supplements and healthy eating and I can tell you that it took me years to discover that I now can walk on even rough surfaces bare foot and it doesn’t hurt me anymore!
I still get the odd pain here and there and the odd itch that I sometimes even think “do I have a fungus?” because it is sometimes around one toe and it its intense and nothing puts the itch out, no matter how much you scratch… but then one day it just stops for awhile and maybe starts up again a few months/years later.
This is my personal opinion and not a general advice for anyone: I ignore them and learn techniques to not pay attention to them. I would recommend you invest in the proper B1 (TTFD, such as Allithiamine or Lipothiamine or Thiamax) and start supplementing a small dose. You will likely get a paradoxical reaction, so please refer to the article Chandler noted. I would also recommend that you get a full blood test for all vitamins and minerals, and ask a knowledgeable professional about where you stand. Most doctors will say you are OK as long as you fall within lab ranges but I disagree with that strongly! In some instances, such as B12, you need to be at the 80th-90th percentile of the maximum lab range to consider it normal. In folate (B9) many labs have no upper limit at all so you really need to know where it is ideal. All labs will give the range of 2-15 as normal for homocysteine, but in reality on 6-7 is normal, etc.
Please watch the video with Judy! I was very pleased with it. It is part 1, so one more part and then the whole video will be released by the end of this coming week or so! It was a wonderful interview–she is an awesome person to chat with. Glad you watch her!
I hope you will find a good solution for yourself. I am glad to help but for that you would need to join my migraine group on FB, which you can if you wish. Just note on the entry request that you have small fiber neuropathy and saw me here. 🙂
Best wishes,
Angela
Hi,
I’ve been on Duolextine for almost two years now, and antidepressants (ssris) constantly since I was eleven.
I have frequent hot flashes, headaches, internal “vibrations” and a feeling of restlessness, irregular heart rate, palpitations, neurological issues, troubling memory issues (short term), little to no period (menstrual), livedo skin rash and purplish patches on elbows and knees, a feeling of lump in throat and tightness in chest (these two are constant), debilitating fatigue, hive type rashes after showers sometimes, shortness of breath, severe anxiety, heat intolerance, persistent body odor, dizzy spells, tremors, muscle weakness, and numerous other issues that I can leave to the imagination because there is so many. I’ve been to multiple ERS for these issues, several primary care doctors, and even a cardiologist. The only thing they found was low potassium. It’s so troubling because i’m afraid I’ll get off this medication, only to find the medication wasn’t the problem.
Your thoughts on this?
Sabrina,
Name one health condition that can cause these symptoms… there is a reason why your doctors cannot find anything wrong. Just think for a moment. Are you takign this medication because your body is low on SSRI medications? generally speaking a medication is given to reduce the symptoms of a “disease”. What is your disease? They cannot find it?
My point is that it is important to ask these questions from yourself:
1) What is my disease–do I even have a disease?
2) What caused my disease–assuming you have a disease. Diseases always have at least one cause… what is the cause for yours?
3) What else can I do to prevent my symptoms? Meaning is the disease preventable?
4) Are the symptoms or the disease reversible or can they be put to remission without medicines? Migraine, most forms of neurological conditions, like depression, bipolar, etc., can totally be put to remission by nutrition).
5) What is going to happen to my body if I take this medication for life?
Please ask these questions and see if your responses tell you that you cannot live without SSRIs or that really, it is just a shortcut to feeling better but whatever condition you have may be able to be prevented or put to remission by a lifestyle change.
Best wishes,
Angela
Please take a look at this Facebook page….
It saved my life when I quit cymbalta.
Otherwise I would have thought that I was going mad…
There are over 22000 members feeling the same way…. and there is help getting safely off.
https://www.facebook.com/groups/Cymbaltahurtsworse/
Max 10 percent of the previous dose and about 7 to 30 days in between drops. Most people can only drop by 5 percent or less.
It took me 3.5 years to get free from cymbalta.
Thanks for the link Karina! I will share if on Facebook! Congratulations for getting off Cymbalta!
Angela
Also, medications should only be allowed to be prescribed a duration of time matching or shorter to the clinical trials. There are too many instances of drugs (anti depressants come to mind) being prescribed and people take them for years when the drugs were only tested for weeks.
Dear Sally,
Thank you for your extremely important comment! Indeed! Clinical trials run for a very short time–and on people without possible interacting medicines and health conditions–and so n clinical trial can ensure any drug safety.
Best,
Angela
Do you have any idea what would happen to patients if off-label prescribing were made illegal? Who is going to trial drugs and supplements for rare disease patients or other unprofitable markets?
Here’s just one example I happen to have read about. Monarsen, a promising antisense alternative to pyridostigmine bromide for patients who have developed drug tolerance to this life saving therapeutic medication, was never brought to market for myasthenia gravis for economic reasons. Myasthenia patients are waiting for this drug to be brought to market for the much more common condition ulcerative colitis. If off-label prescribing were illegal, myasthenia patients would never get access to this med because it will only be approved for ulcerative colitis (even though it was originally invented and developed for myasthenia).
Here’s another example. Myo-Inositol trispyrophosphate facilitates the transfer of oxygen from the blood to muscles. It shows therapeutic promise for the many chronic illnesses that involve fatigue and weakness, including genetic and acquired mitochondrial dysfunction. However, it will be most profitable if it’s brought to market as a very expensive cancer drug, so that’s how it’s being researched. If off-label prescribing were illegal, only cancer patients would have access to a medication that could change the lives of chronic illness patients. Hopefully they would choose to additional trials since there are enough chronic illness patients for profitability, but we’d all have to wait years and years after the drug’s safety profile was known.
Ann, I respectfully disagree. The goal is not to encourage off-label marketing, but instead, make drugs legally on-label for the diseases they help. A very large percent of off-label drugs cause more harm than good. Off-label use prevents lawsuits, for example. it is in the interest of big pharma to push drugs for off-label use because then they are not responsible for the damages they may cause.
This also goes for off-label procedures, such as epidurals–the steroid injections into the spine. A few years back there was a batch of moldy steroid injected into the spines of many people. The FDA was angry and came out with big voice that epidurals are off-label. This prevented those harmed–many died by the way–from being able to sue and claim any benefits.
I am not at all supporting off-label use of any drug. If a drug works, let it be used on-label!
Best,
Angela