ALS remission with glucocorticoids

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Guille

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There has been a lot of heated talk lately on other forums and elsewhere about ALS being treatable with glucocorticoid drugs like dexamethasone, kenalog or prednisone. SOme are claiming that Ted Harada got better because of the anti-inflammatory drugs he has been taking. A number of ALS patients claim to be getting fantastic improvements and even remission of symptoms from certain anti-inflammatory drugs and supplements.

I would love to hear any anecdotal account from ALS patients (or caregivers) on this forum who has seen improvements from glucocorticoids, possibly after a surgical or dental procedure during which they received an anti-inflammatory drug.

Do a Google search for "als anti-inflammatory glucocorticoids" for more.

Guille
 
Steroids are dangerous drugs to try. They suppress your immune system- good I suppose if als is an autoimmune disease but leave you open to infections- not something an als person needs
 
Steroids are dangerous drugs to try. They suppress your immune system- good I suppose if als is an autoimmune disease but leave you open to infections- not something an als person needs
Thanks for the reply. Yes, certainly. I agree that corticosteroids are dangerous. However, Ted Harada seems to be doing fine after years of taking powerful anti-inflammatory drugs. Tens of thousands of arthritis sufferers also take anti-inflammatory steroids regularly. So, if administered under a doctor's care, it should be fairly safe. Besides, which would you rather have, dying from ALS (an almost sure thing) or living with a quasi normal life with steroids?

That being said, there seems to be a mountain of evidence that point to ALS being an autoimmune disease. Anti-inflammatory drugs are a no-brainer, no? So why hasn't the ALS therapy development industry do anything to investigate glucocorticoids for ALS after all those decades of research? A growing number of ALS patients are claiming improvements from glucocorticoids. Why are they being ignored? I smell something fishy.
 
ALS is not an autoimmune disease. My husband was treated with large quantities of steriods to rule this out in the beginning of his diagnosis. They didn't do a darn thing for him.
nothing fishy, they just don't work and that is why the research has not developed further in that direction
 
ALS is not an autoimmune disease. My husband was treated with large quantities of steriods to rule this out in the beginning of his diagnosis. They didn't do a darn thing for him.
nothing fishy, they just don't work and that is why the research has not developed further in that direction
Thanks for the reply. As with everything else, not every patient will get the same result. Sometimes it is just a matter of the drug not being able to reach the affected areas due to inflammation and other problems having to do with the blood brain barrier. And there is no reason to suppose that every ALS patient has the same variant of the disease given that different genetic mutations can cause it. The fact remains that several ALS patients (e.g., Ernie Schmid, Paul Aiken and others) are reporting and have been reporting for some time that their ALS went into partial or full remission after taking corticosteroid injection.

It also appears that not every ALS researcher out there is convinced that ALS is not an autoimmune disease. Otherwise, Emory university and Massachusetts General would not be conducting a trial to determine whether or not Ted Harada and others got better as a result of the anti-inflammatory drugs they were given. Dr. Angela Genge apparently think so and this is what forced them to conduct the trial. The Houston Methodist Neurological Institute is also conducting an ALS trial of pulsed steroid treatments using dexamethasone.

Note also that there are several types of hormonal steroids. Was your husband treated with glucocorticoids? What was the name of the drug he was given?

Guille
 
That being said, there seems to be a mountain of evidence that point to ALS being an autoimmune disease. Anti-inflammatory drugs are a no-brainer, no? So why hasn't the ALS therapy development industry do anything to investigate glucocorticoids for ALS after all those decades of research? A growing number of ALS patients are claiming improvements from glucocorticoids. Why are they being ignored? I smell something fishy.

Why don't you ask them directly?
Otherwise you are stirring up conjectures of opinions.

Are you giving high levels of glucocorticoids to your PALS? Please tell us a little of your PALS onset, diagnosis date, progression rate and how long on glucocorticoids and the results. That might be more productive for us to discuss?
 
Ted Harada had a stem cell treatment for ALS. Who is saying he is doing well because of the steroids? Are they researchers or physicians or a professional that by their education, training and experience qualified to make that judgment?
 
I would think the stem cell treatment is far more likely to have been the result of his good results than the steroids
 
Ted Harada had a stem cell treatment for ALS. Who is saying he is doing well because of the steroids? Are they researchers or physicians or a professional that by their education, training and experience qualified to make that judgment?
Actually, nobody really knows why Ted got better. Dr. Angela Genge of the Montreal Neurological Institute thought his improvements were most likely due to the cocktail of anti-inflammatory and immunosuppressive drugs he had been taken. This is the reason that Neuralstem was forced to conduct a trial with those drugs just to make sure. The trial is being conducted by Emory University.

There is also a trial using pulsed steroid therapy with dexamethasone going on at the Houston Methodist Neurological Institute under the direction of Dr.Stanley Appel. So obviously, a significant number of ALS researchers believe that a subset of ALS cases can be treated with anti-inflammatory drugs. If so, it would indicate that the treatable cases are caused by an autoimmune disorder.

Let me add that I have seen my PALS get noticeably better after being given a small amount of dexamethasone during a surgical procedure.

Guille
 
My PALS was on Prednisone, Imuran and monthly doses of IVIG... with 4 daily IVIG dosings per month for the last 3 months of the year she was on this regimine. She was being aggressively treated for the autoimmune disease CIDP. When she neither leveled or improved, but instead continued to have a steady decline of abilities, we sought a second opinion. After another round of testing and symptoms having had a year to more fully show themselves, she was diagnosed with ALS. So, at least for my PALS, autoimmune treatments offered no improvement.

Jim
 
Guille you raise interesting points, and I think this discussion is an important one. Many scientists have considered that ALS is autoimmune based. They believe that diseases like CIDP (which my husband has) is on a continuum and without treatment evolves into ALS. I have followed Ted's story and have found the aspect of whether the corticosteroids have improved his condition or did the stem cell treatment cause the improvement very interesting. There are many people with CIDP who have had stem cell treatment in Chicago following a similar protocol who have had life changing improvement too. Corticosteroids or stem cell treatment--which worked. And then why does IVIG help some, Immuran helps others, corticosteroids helps others and all of the above doesn't help at all for many? I believe it will be found to be similar to MS. There are different types of MS --some types are relatively benign in the damage caused and it is responsive to many drugs and there is the unrelenting progressive MS that responds to no drugs. I think Ted's doctors will be the ones who will find the answers.
 
Won't the results of these two trials answer this question?

Immunosuppression in Amyotrophic Lateral Sclerosis (ALS) (NIPALS2013)

Immunosuppression in Amyotrophic Lateral Sclerosis (ALS) - Full Text View - ClinicalTrials.gov

Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis

Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis - Full Text View - ClinicalTrials.gov
 
Laurel, thank you for your reply. I agree with your assessment and I would go even further. I think that almost all types of ALS and other neurodegenerative diseases are autoimmune disorders. I think there are two main reasons that some anti-inflammatory drugs seem to work on some PALS and not others.

First, the immune system is a vast and complex mechanism. It is strongly linked to the central nervous system with which it shares a number of receptors, genes, proteins, etc. ALS seems to affect a huge portion of the immune system. Anti-inflammatory drugs target only small parts of the immune system and not others. In other words, one drug may work for one type of ALS but not others. Some drugs may have only a limited effect. So it would make sense to use a comprehensive cocktail of immunosuppressive drugs to increase the likelihood of a strong therapeutic effect.

Second, neuroinflammation, impaired circulation and other factors may prevent certain drugs from reaching areas of the brainstem and the spinal cord where they can be beneficial. If so, some patients will see improvements only if the anti-inflammatory drugs are injected directly into those areas.

Let me conclude by saying that I have read many published papers on ALS and they clearly point to an autoimmune disorder. My cynical self tells me not to trust medical research too much especially when there is so much at stake. If a cheap non-proprietary drug is found to treat most forms of ALS, a lot of highly placed people and companies stand to lose a lot of money. And I'm talking about billions and billions of dollars. Money corrupts.

Guille
 
Guille,
The most common way to profit from generic compound efficacy (apart from simply selling a lot of a lot of generics, as several successful companies are doing) once the main patent has expired is to develop a branded version whose release profile or other feature is just a little bit different, a little bit better, or simply to develop cheaper processes for making the core generic. This is just as plausible a strategy in ALS. Moreover, if a cocktail is the answer, it's a good bet at least one branded compound [possibly OTC drugs as well] will be a component of that and/or someone will launch a combo. Someone will make money, fear not. Nor do NIH and other funders take their cues for reviewing applications from industry; on the contrary, they look to fund what industry can/will not.

You can believe in a vast industry conspiracy if you want to, but you won't find billions of dollars at stake. There simply isn't that much money being spent in ALS. And that is the real issue -- a million dollar burden for every family is being represented by a penny ante mentality.
 
Guille, any chance you will answer my questions?
 
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