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

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.

"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!

“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.

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.

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.

Zyklon wrote: ↑Wed Feb 06, 2019 8:24 amNow 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.

seeva wrote: ↑Wed Jan 30, 2019 4:29 am HI FRIENDS PLEASE READ
https://multiplesclerosisnewstoday.com/ ... hard-fast/
regards
seeva

There is a new study. Similar but different. And they point to hit even earlier and harder. This is what the first report said:

"People with RRMS who were initially treated with a glatiramer acetate (Copaxone, Glatopa) or an interferon beta (Avonex, Betaferon, Extavia, Rebif) had a lower risk (12 percent) of progressing to secondary progressive MS (SPMS) than people who received no treatment (27 percent)."

This is what the new one says.

"In a large cohort study of MS patients based on real-world data, early treatment with natalizumab, fingolimod, or alemtuzumab was associated with a lower risk of conversion to secondary progressive MS compared with interferon beta or glatiramer acetate.Aggressive treatment of relapsing-remitting multiple sclerosis (RRMS) can reduce the risk of conversion to secondary progressive MS (SPMS), particularly when it is started early after disease onset, according to a new study that compared differing approaches to disease-modifying therapy".

Source: https://insights.ovid.com/neurology-tod ... 2/00132985

From: https://journals.lww.com/neurotodayonli ... ive.2.aspx

...
While many side effects of disease-modifying therapies are manageable, he said there is potential for dangerous side effects with particular medications. For instance, natalizumab has been tied to an elevated risk of progressive multifocal leukoencephalopathy and fingolimod may elevate the risk for herpes zoster infection, he said.
...

Risk vs benefit.

Zyklon wrote: ↑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.

Using the better drug is not a waste. Using drugs which are proven ineffective is a huge waste. Take drug x and progress from A to Z in 15 years. Or don't take drug X and progress from A to Z in 15 years. You might as well spend 15 years wearing blue socks. Because the number of people who wear blue socks and don't progress who claim it was because of the color of the socks... No matter how convinced you are, everyone on the outside knows it doesn't matter.

When I was first diagnosed my Dr told me how lucky I was to have MS now. Now the having MS thing, but several years ago there were no real drugs for it, and now there were (at the time) 6! And then the pills came out and then all the new stuff. Anyway I was moved to a Neuro and talked drugs with her, and all the amazing things that would make this all a non-issue. She explained that *if* I was going to suffer 6 relapses per year, and I go on the BEST drug available, I *might* only have 5. But the end result was going to be the same.

So I research a bit and see pretty much the same thing. Time to wheelchair, unchanged regardless of how many times I week I poked myself.

When your only claim to faim is that if you take drug X, you *might* suffer 1 fewer relapses, you're not worth taking. Roll the dice and see how things turn out imo, when the only options are not real options. I don't agree with doing *something* even though it doesn't do anything.

If I'm in a sinking boat and I have 2 options, 1 which cleans up the water coming in but doesn't get rid of it and the other that should at least SLOW the water coming in, I'm not going to be cleaning up.

You think about short term. My concern is long term. I support using the best drugs when we absolutely need. If I can stay NEDA with the CRAB drugs, why waste the best drugs?

Anunymouse,

I too was told "how lucky I was to have MS now" back in 1999. Whatever... Did we have the same neuro?? (jk)

Take care!