"Possible cure for MS?" Topic

Basically it involves Immunoablation and autologous haemopoietic stem-cell transplantation. For an easier explanation:

link

"Freedman, who has researched MS for three decades, began to notice remarkable changes in other patients, including the vanishing of involuntary rapid eye movement, called primary nystagmus, common in MS patients.

"I've never seen it disappear. Something really neat was going on with these people that was not explainable by our expectations. They were healing."

Some participants recovered lost vision, regained mobility and have even returned to work."

So I have been diagnosed with recurrent MS and am taking Tecfidera. This is NOT a cure. It keeps the recurrences farther apart and minimizes the severity of attacks. During an attack, I am put on chemotherapy levels of prednisone, 1250mg per day. One can imagine what sort dosage that is as prednisone doesn't come in anything bigger than a 50mg tablet (in Canada anyway).

This new technique seems to actually reverse the damage brought on by MS. The therapy is only experimental so far and is, understandably, given to more severe cases.

That's amazing.

Dr. Steven Novella talked about it on NeuroLogica: link

His take-away:

These results are encouraging and deserve further research. Such research would include a larger number of subjects and a control group. I doubt the control group would include any kind of placebo. Rather, such a study would randomize subjects to either receive the stem cell treatment or standard therapy. That cannot be double blinded, but you can have doctors examining patients and looking at MRI scans who are blinded to the subject's treatment status. If there is a dramatic difference in an objective outcome measure, that kind of study design is perfectly adequate.

In addition further studies could start to parse out which MS patients are more likely to respond favorably to such a treatment, and which patients may be at higher risk of an adverse outcome.There also may be slightly less aggressive interventions with similar outcomes – optimizing risk vs benefit.This is a serious treatment, but MS can be a very serious disease. That would be a difficult choice, facing a 1/24 chance of short term death for the chance of curing a debilitating disease. Hopefully we can improve those odds, but even still such an option might be worthwhile for patients with very aggressive MS.

I doubt this treatment will become the primary treatment for all MS patients, not with a risk of death that high. It will probably become a desperation treatment for the most severe cases who are not responding to safer interventions. This is not a cure for MS, but another option in a growing arsenal we have to treat this complex set of diseases.

That's amazing.

Agreed. The mass dosing of prednisone shuts down the immune system. Once it starts up again, the hope is that it will stop attacking the body.

With a full immunoablation, the immune system is effectively destroyed. That's why you need your stem cells to rebuild it.

I doubt this treatment will become the primary treatment for all MS patients, not with a risk of death that high.

Steven Novella is one of my heroes. However, I think he is wrong here. The patient that died did so through complications from their old MS medication. All the drugs have some liver problems. The person died of liver failure after the immunoablation. 70% of the surviving test subjects have no MS symptoms, and that is outstanding.

Also given that MS patients are one of those groups where most say they would seriously consider assisted suicide (or just suicide) I think many would take this treatment.

Even loved ones would prefer a treatment that might kill their loved ones if the other option is suicide.

"Also given that MS patients are one of those groups where most say they would seriously consider assisted suicide (or just suicide) I think many would take this treatment."

This certainly is not the case for all MS patients. There are several types of MS. Primary progressive MS is one that debilitates patients quickly and often soon after diagnosis. There are other types of MS that are manageable with drug therapy without relapse.

Steven Novella is almost certainly right that this treatment is unlikely to become the standard primary treatment for MS. In this study you have 24 patients all being treated and studied during their treatment with a very close watch being kept on them. I would imagine that compliance with such a group is very high.

A treatment like this is dangerous. Until they can get a drug like proGP functioning well in a human the annihilation of the patients immune system leaves the patient in a very vulnerable state for a fair length of time. Even with the introduction of the immune cells they aren't out of the woods.

If you are an MS patient and can be treated with medications like Tecfidera that have very few side effects and can lead to a state in which you are not having relapses then why would you lose a year of your life and take the serious risk of death or long term infection and consequent complications when you are living life without many symptoms of your MS.

It may become the primary treatment for those with primary progressive MS or more advanced forms of other types of MS that either went undetected or untreated but I doubt it will ever become a first line treatment.

Unless there a huge advance is made on immune boosting drugs like ProGP. Given my experience in working with proGP I don't anticipate that happening very soon.

Scott, you are correct…..with a few provisos.

It may become the primary treatment for those with primary progressive MS or more advanced forms of other types of MS that either went undetected or untreated but I doubt it will ever become a first line treatment.

Perhaps not with today's drugs. However, trials are underway to try this technique with other severe autoimmune diseases. This is just a start.

If you are an MS patient and can be treated with medications like Tecfidera that have very few side effects and can lead to a state in which you are not having relapses then why would you lose a year of your life and take the serious risk of death or long term infection.

As someone with relapsing recurrent MS, I can state that those on Tecfidera that do not have relapses is almost zero. Those with only one attack, usually are affected in the spine and neck and have no cranial lesions. In these cases the diagnosis is usually Ideopathic Transverse Myelitis. Tecfidera is not a cure. It simply minimizes the duration and severity of the relapses.

Also it is my understanding that all forms of MS eventually progress to progressive MS. So a cure is still needed, regardless of the increasing efficacy and decreasing side effects of the controlling medications.

Besides all the science mumbo-jumbo behind all this ( I'm the first to say "huh!") I'm completely blown away by the progress in this. My hope is that MS becomes a totally curable disease. Good one for those scientists types.

"As someone with relapsing recurrent MS, I can state that those on Tecfidera that do not have relapses is almost zero."

Interesting. I know three people on Tecfidera who have had no relapses after several years.

No one said that Tecfidera is a cure. If it were a cure you wouldn't have to keep taking it.

Also it doesn't work for everyone. For some people Rebif or some of the other drugs work better, for some Tecfidera works best.

The problem with any treatment that damages or wipes out the immune system is the risk of opportunistic infection. For the number of people that have MS you are going to have plenty that are non-compliant with their medication. Regrowing the immune system takes time.

My guess is that before this becomes the primary, first line, treatment for MS, gene therapy will develop something better.

Tecfidera seems to have the best results of any medication, Rebif included. In a two year study period, Tecfidera has diminished relapses by 49%. Further results are here, according to Tecfidera's manufacturer:

link

I've had two relapses. I wasn't taking Tecfidera at the time and it was 3 years between attacks. Tecfidera has only been OK'd for use since 2013. It wasn't even in use at my first attack.