PwMS in placebo end of trials are having less relapses

[cheerleader]

Dr. Lawrence Steinman recently made a very interesting comment in an article on vitamin D levels in MS progression. (Dr. Steinman, MS researcher and inventor of Tysabri, is now behind the upcoming clinical trial of Lisinopril, an inexpensive generic blood pressure medication, as a treatment for MS.) http://ccsviinms.blogspot.com/2013/08/m ... blood.html

Dr. Steinman noted that there has been a decrease in relapse rates in the placebo end of MS drug trials over the last decade.
http://www.medpagetoday.com/Neurology/M ... osis/43899

That's right. People who are diagnosed with MS today are having less relapses than people diagnosed a decade ago---without being on a disease modifying drug. These patients were in the placebo end of trials, and not getting the real medication.

Why? Here are some thoughts--
http://ccsviinms.blogspot.com/2014/02/n ... today.html

cheer

[NormB]

It is refreshing to see that Dr Steinman is very active in pursuit or our betterment and not just for the money.(studying of a generic drug)

It is also enlightening to see the benefits of vitamin D which to a certain degree might explain the several more MS cases with latitude but then again what about the eskimos?
6 months dark 6 months sun Might be interesting to find if they are more prone to MS. (Diet?)

Btw Cheer good trick to visit your site (wink wink)

Many thanks

Take Care All

Norm

On LDN since more than a year with good benefits.

[cheerleader]

Hi Norm---
Just because Lisinopril is generic for BP now doesn't mean it can't be renamed, modified, and repurposed for pwMS-- who are then charged ridiculous amounts. Look what happened with Fumaderm/BG12/Tecfidera or Campath/Lemtrada. Dr. Steinman is a good guy, but he's a good businessman, too.

Hope you read the note I linked, even though it's my blog...it's not just vitamin D. (wink wink!)
If you can't beat MSUK, join 'em!! http://ccsviinms.blogspot.com
cheer

[Anonymoose]

Hope you read the note I linked, even though it's my blog...it's not just vitamin D. (wink wink!)
If you can't beat MSUK, join 'em!! http://ccsviinms.blogspot.com
cheer

Why would you want to beat msuk? It's an informative site. We need to see all of the information available, not just one group's perspective/opinion.

[jimmylegs]

NOOOO you can only listen to MEEEE anon ;)

[eric593]

People in the placebo arm could be having less relapses than they did in the placebo arm earlier because with the internet and informative information much more freely available, people could be much more afraid of MS's trajectory and their prognosis than beefore when almost everything we knew about MS came from vague descriptions from our doctors which made us more optimistic. We may therefore have much higher hopes and expectations from our new treatments in trials, which increases the placebo effect. The plaxcebo effect could have also increased because newer treatments are much riskier with greater side effects which would be a factor in our desire to want the treatment to work.

Has natural history progression (without any meds) changed from decades ago? Only if that were the case could you attribute an improvement to some factor that's been changed from natural history studies decades ago such as increase in vitamin D exposure, change in diet, etc.

[cheerleader]

NO, anon can only listen to meeee, JL!!!!!!

but seriously folks (rimshot)---it's thanks to people like jimmy and anon on TIMS, and Dr. George Jelinek, and Dr. Terry Wahls, and Dr. George Perlmutter, and Dr. Ashton Embry, Marie Rhodes, and all the bloggers and all the Facebook groups, and most especially Al Gore and the Internet!!

We've all been getting the info out there. And for those who were not tempted to click on my blog--a brief anecdote about 7 years ago.

When Jeff was diagnosed seven years ago, I asked his neurologist to test his Vitamin D3 levels. I had been reading research on Dr. Ashton Embry's website, Direct MS, and wondered about the correlation. His neurologist said it didn't matter. Neither did diet or exercise. MS was an immune-mediated degenerative disease, and there were no scientifically proven means, aside from disease modifying drugs, to slow disease progression. Case closed. Good luck.

We got Jeff's GP to order the test, although we had to pay for it, since our insurance didn't cover vitamin D testing. Sure enough, his level was very low at 40ng/mL He began to get more sunshine exposure, and take a D supplement, and the next time he was tested, six months later, his level was at 70ng/mL. He felt better, too.

TO READ MORE (you know you want to....) http://ccsviinms.blogspot.com
cheer

[NHE]

Just because Lisinopril is generic for BP now doesn't mean it can't be renamed, modified, and repurposed for pwMS-- who are then charged ridiculous amounts. Look what happened with Fumaderm/BG12/Tecfidera or Campath/Lemtrada. Dr. Steinman is a good guy, but he's a good businessman, too.

Thalidomide was an inexpensive generic... until it was approved to treat cancer!

[Kronk]

It is also enlightening to see the benefits of vitamin D which to a certain degree might explain the several more MS cases with latitude but then again what about the eskimos?
6 months dark 6 months sun Might be interesting to find if they are more prone to MS. (Diet?)

I think Diet is hugely important as Inuit eat a ton of Vitamin D. But Australia and South Africa do not lack sunshine and they have MS cases as does Argentina, Kenya and Brazil. I think an explaination for this could be that people of ethnicity do not get MS. or many other auto-immune disorders. Obvioulsy some african american, native american etc. can get MS but its hypothesized that they have mixed race somewhere in their history. Japan has an incredibly low incidence of MS and they didnt start seeing cases until after they modernized. The fact that MS is a primarily caucasian illness is interesting, and likely tied to genetic make up.

http://www.cbc.ca/news2/interactives/map-ms/

http://www.ncbi.nlm.nih.gov/pubmed/12849268

[Anonymoose]

NOOOO you can only listen to MEEEE anon ;)

NO, anon can only listen to meeee, JL!!!!!!

Ooo! A competition for my ear. I feel so special. I will fully dedicate my listening to whomever has the cure proven with before/after mris, blood, and csf results. Prove the individual had ms and that it was completely cured and I am all yours.

[cheerleader]

Obvioulsy some african american, native american etc. can get MS but its hypothesized that they have mixed race somewhere in their history. Japan has an incredibly low incidence of MS and they didnt start seeing cases until after they modernized. The fact that MS is a primarily caucasian illness is interesting, and likely tied to genetic make up.

Hi Kronk--Actually, African American numbers of cases of MS have been rising--black women have very high rates:

The two studies showing a relative rise in blacks getting diagnosed with MS raise the specter of vitamin D deficiency. MS could be linked to a lack of sunlight exposure, she says. It’s well established that many dark-skinned people living in North America and northern Europe have trouble maintaining adequate vitamin D levels in winter (SN: 7/16/2011, p. 22).
Obesity may play a role, too, Ebers says, since excess fatty tissue lowers vitamin D levels in the blood. “But there’s no single factor” that can explain why some people get MS and others don’t, he says. Smoking and exposure to Epstein-Barr virus, which in some people causes infectious mononucleosis, add to MS risk, he says

https://www.sciencenews.org/article/bla ... osis-rates

But the note from my blog does not address what is causing MS or what will cure it (sorry anon!!), but the fact that people who are being dx now appear to be healthier than those dx 10 years ago. I guess what my proposal is --is that people are getting on the internet sooner into diagnosis, and learning about the things they can change. They can lose weight, exercise, take a D supplement, eat whole foods, stop smoking, get a sunlamp. All of these environmental factors will help lessen the severity for many with RRMS (not all.)

There are things we can change, and things we can't. Like the serenity prayer says, Give me the wisdom to know the difference.

When Jeff was dx seven years ago, he was told NOTHING he could do would make any difference in his disease. Not diet, not exercise, not vitamin D, not stress relief---NOTHING, except a DMD.

But he decided to change some things anyway, after we got on the internet. We think it's because these changes helped his cardiovascular/endothelial system (he lost weight, his cholesterol numbers, liver enzymes and inflammation numbers went down, his petechiae went away, he got a venous malformation fixed, he got more sun and nitric oxide from UV rays, he got physically fit, he ate more whole foods, he quit sugar and gluten, etc...)
It's impossible to placebo control a lifestyle----but that doesn't mean it's not worth a try.

cheer

[Kronk]

OK the race thing is much more complicated than I originally thought. Black men have reduced chance but black women are at a higher risk. I wonder if it has more to do with lifestyles?

http://www.medicalnewstoday.com/articles/260150.php

"...A possible explanation for our findings is that people with darker skin tones have lower vitamin D levels and therefore an increased risk of MS. However, this does not explain why Hispanics and Asians have a lower risk of MS than whites, or why only black women but not black men are at a higher risk of MS..."

[1eye]

Isn't it possible that an effective way to treat people with (especially early) MS might be to enter them into a never-ending series of clinical trials, and, unbeknownst to them, always put them in the placebo group? It may be that this is an effective way to treat many diseases. Doctors have long known about the power of placebo.

[ElliotB]

1eye, if you read through the info, the comparison is to individuals from clinical trials from many years prior and that because of better education about MS and overall better health, people do better in the placebo groups than they used to because of better health. This has little to do with the 'placebo' effect.

From one of the links posted by the OP:

"Newly diagnosed are healthier today than a decade ago"

"... self-help, or "alternative" information is getting out there, thanks to the internet. People with MS are sharing information, and getting healthier."

[1eye]

Sick people are equally likely to benefit from new knowledge, self-help, healthier lifestyles, the internet, and anything else you might claim is the real explanation for placebo patients doing better. That's why the trials are randomized. Placebo effect is real. It is a genuinely effective treatment for real disease. It can likely be used to provide more than one kind of care.