RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
Post Reply
User avatar
seeva
Family Elder
Posts: 495
Joined: Sun Jan 20, 2008 3:00 pm
Location: SYDNEY
Contact:

RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by seeva » Wed Jan 30, 2019 4:29 am

HI FRIENDS PLEASE READ
https://multiplesclerosisnewstoday.com/ ... hard-fast/
regards
seeva

Zyklon
Family Elder
Posts: 293
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by Zyklon » Sat Feb 02, 2019 3:52 am

I strongly disagree. Why should I take the PML risk when mild drugs are effective and I am in remission? PML is no joke and strong drugs greatly increase the risk.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

ElliotB
Family Elder
Posts: 1723
Joined: Mon Feb 03, 2014 4:08 pm
Been thanked: 7 times

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by ElliotB » Sat Feb 02, 2019 6:28 am

"Why should I take the PML risk"

You shouldn't and I don't know why anyone would when there are numerous DMDs that seem to work and do not have the risk of PML.

The point of the article is that if you plan on ever starting a DMD, you should do it right away rather than wait, even if you are in remission. It can make a huge difference in the course of disease of the long term. Yet many do well without taking a DMD as many do - no one really knows for sure whether they (DMDs) really work or not!

Zyklon
Family Elder
Posts: 293
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by Zyklon » Sat Feb 02, 2019 5:40 pm

“Among patients with relapsing-remitting MS, initial treatment with fingolimod, alemtuzumab, or natalizumab was associated with a lower risk of conversion to secondary progressive MS vs initial treatment with glatiramer acetate or interferon beta,”
Saying that without informing about PML is misleading.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

Anunymouse
Family Member
Posts: 71
Joined: Thu Sep 04, 2014 10:07 pm

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by Anunymouse » Tue Feb 05, 2019 6:43 pm

Because statistically mild drugs ARE NOT effective? At all?
Over time the same percentage of people on them as not taking anything, reach the same end point. The way the drugs 'work' is unverifiable. You can't prove that you took x so you only had 3 relapses instead of 4. All you can say is you only had 3 relapses. When you end up in a wheelchair regardless, in the same timeframe, it doesn't matter how many shots you took.

When you read the studies and see that the difference between CRAB and nothing is essentially the same, it's a pretty hard argument for me to make that there is a reason to take shots every day. While they *may* help 8 more people out of a 100 than nothing at all, I can run the odds. If I'm going to take any drugs, I'd prefer to take one's with a little better odds of doing something. Hard and heavy IMO. If I'm in a fight, I fight to win. I don't fight to barely not tie.

Zyklon
Family Elder
Posts: 293
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by Zyklon » Wed Feb 06, 2019 8:24 am

Anunymouse wrote:
Tue Feb 05, 2019 6:43 pm
Because statistically mild drugs ARE NOT effective? At all?
Over time the same percentage of people on them as not taking anything, reach the same end point. The way the drugs 'work' is unverifiable. You can't prove that you took x so you only had 3 relapses instead of 4. All you can say is you only had 3 relapses. When you end up in a wheelchair regardless, in the same timeframe, it doesn't matter how many shots you took.

When you read the studies and see that the difference between CRAB and nothing is essentially the same, it's a pretty hard argument for me to make that there is a reason to take shots every day. While they *may* help 8 more people out of a 100 than nothing at all, I can run the odds. If I'm going to take any drugs, I'd prefer to take one's with a little better odds of doing something. Hard and heavy IMO. If I'm in a fight, I fight to win. I don't fight to barely not tie.
Let's say you are diagnosed at 30 years old=T0

A) You started a mild drug
B) You started Ocrevus or Tysabri

Both are NEDA at T0+2. B is JC Virus positive.

A had a minor relapse and B was NEDA at T0+3

Now my point, patient B at T0+4 JC Virus level was high and the doctor suggested stopping it. Very limited choices at that time. Either continue the drug at very high risk or go drug-free. Patient A started Ocrevus with very low PML risk.

I believe as long as you are NEDA or having acceptable relapses, going mild drugs is better for the future. Wasting better drugs at early stages is not a good choice.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
NHE
Volunteer Moderator
Posts: 5045
Joined: Sat Nov 20, 2004 3:00 pm
Been thanked: 5 times
Contact:

Re: RE; MS STUDY SUPPORTS HITTING MS FAST AND HARD

Post by NHE » Wed Feb 06, 2019 11:31 pm

Zyklon wrote:
Wed Feb 06, 2019 8:24 am
Now my point, patient B at T0+4 JC Virus level was high and the doctor suggested stopping it. Very limited choices at that time. Either continue the drug at very high risk or go drug-free. Patient A started Ocrevus with very low PML risk.


Don't forget the risk of immune reconstitution inflammatory syndrome (IRIS) which, in some cases, has proved fatal.

Lethal Multiple Sclerosis Relapse After Natalizumab Withdrawal
http://n.neurology.org/content/79/22/2214.long
Natalizumab dramatically reduces relapses in patients with active multiple sclerosis (MS), but it may induce progressive multifocal leukoencephalopathy (PML).1 A rebound of MS or an immune reconstitution inflammatory syndrome (IRIS) were described after natalizumab withdrawal, even in the absence of PML.2,3 Very few data concerning the potential severity and the neuropathology of this event are available. We report the case of a 50-year-old patient with MS who developed a fulminating relapse 3 months after stopping natalizumab, leading to death despite intensive care and immunosuppressive therapy. Radiologic and neuropathologic findings provide interesting data regarding the nature of the rebound.
The man's death provided "interesting data" for science. How comforting. :roll:

Post Reply
  • Similar Topics
    Replies
    Views
    Last post