Treat MS like cancer

[sandwich]

I'm in the treat with the big guns gang. I have no symptoms or disability at the moment but have opted for Lemtrada. Easy choice for me. MS is a high risk disease with various side effects. I might be fine now but I doubt I'll be saying the same in 20 years. Hit hard and early is my motto. In fact if I could afford HSCT right now I'd sign myself up.

[ru4cats]

I'm in the treat with the big guns gang. I have no symptoms or disability at the moment but have opted for Lemtrada. Easy choice for me. MS is a high risk disease with various side effects. I might be fine now but I doubt I'll be saying the same in 20 years. Hit hard and early is my motto. In fact if I could afford HSCT right now I'd sign myself up.

Good for you! The first thing I learned was that, at my age (58) of diagnosis, I was already behind the curve. The younger you are and the harder you hit your MS, the better your chances are for a bright future.

[Marco]

Sorry, I am very late to this discussion

My opinion for all RRMS patients.

I often see questions from patients asking drug X or drug Y. In these situations, I would almost always start with the medication with the higher average efficacy. There are many more considerations besides average efficacy, but all other things being equal it's a decent tie-breaker.These medications are generally not tested head-to-head, but we do have average efficacy indicators. I say this because the goal is to avoid as many lesions, flare ups and as much disease progression as possible. That doesn't mean every patient will do better on a medication with higher efficacy. Quite simply, I would stay on any therapy that was keeping the disease subdued.

You have to protect your brain as effective as possible, as early as possible. The notion that you can go 10-15 years and then start taking medications is largely misguided. All of our therapies work better during the earlier inflammation stage of the disease. You cannot ramp up after damage has been done and roll back the damage.

That's why Cladribine, Lemtrada and HSCT are so attractive early in the disease. These therapies have the the ability to force the disease into remission for a number of years. This protects your brain and maintains your abilities while the disease is essentially dormant. That gives researchers more time to develop even more advanced treatments and potentially a cure.

All other medications have the ability to place a patient into a NEDA (No evidence of disease activity) state. Drugs with a higher average efficacy have a better chance of a patient reaching NEDA. Unfortunately, increased risks often come with the more potent drugs. For example, some estimates show that 67% of Tysabri patients have reached NEDA. At the same time, more Tysabri users have died as a result of the medication than all other MS medications combined.

Medication decisions are even more difficult when considering new or experimental therapies. When there is no long-term medication track record you're taking a larger risk than say with the CRAB drugs. Cladribine and Lemtrada are considered induction therapies and their use is more consistent with how cancer is treated. Cladribine and Lemtrada were both initially denied approval by the US FDA largely for safety concerns, but Lemtrada was later approved.

Some of you have great neurologists and others do not. Some patients need to find a new neurologist and others need to start listening to their neurologist. I would encourage all patients to do your research and then have open conversations with your neurologist. Don't leave your healthcare decisions to someone else; please get involved. Discuss disease activity and when medication changes should be considered. When starting a new drug ensure your expectations are correctly set and understand the possible benefits and risks. Too often patients quit a medication before giving their body a chance to adjust or the medication to work. Other patients stay too long on a medication that isn't working well for them. Keep up the daily fight!

As always, I wish you all well!

[jreagan70]

I'd like to go back to the very first response in this thread.

BUT......on the flip side, you do not want to overtreat someone who actually will never need the heavy guns. <snip> But some...might have had serious side effects from chemotherapy they did not need, including death, or become infertile, when the "lesser" treatment was all that was required.

There's another analogy for the issue of very aggressive early treatment in the absence of evidence indicating that the big guns are necessary:

How many innocent people is it acceptable for a jury to convict, even put to death, with minimal evidence, just to insure that no guilty person ever goes free?

How many casualties of unnecessary treatment -- PML effects, PML deaths, cancer deaths, Grave's disease, ITP, liver failure, infertility, and even "CCSVI" deaths in people who don't have current evidence of need for aggressive treatment -- are acceptable just to try to insure that no one who would later develop severe consequences of MS ever becomes debilitated?

Would you be willing to die now for the unknown odds of living better 20 years from now? Would you be willing to die now so someone else has better odds of living better 20 years from now?

[shel67]

This is what I'm trying to do... This disease can only be assessed after the fact, you can't know in advance what it's going to do. Had I realized or known, understood this when I suspected MS 5 years ago, good chance I wouldn't be here now with black holes. This disease for me progressed with mild symptoms and with no symptoms and no disability then one day I woke up to a changed life, not just for me but my family. It's not pretty.

So I'm trying to choose the DMD that will give me a fighting chance to not let this go any further. My age is not on my side, another thing MSers need to take into consideration, another thing I didn't know when I thought I maybe had this, is after 40 you stand a chance to progress faster. In my case it did but not noticeably until now we notice and damage is already done.

So I'm going to push for an aggressive med and the dangers scare the heck out of me but what other choice do I have? To become really disabled? I can't.... I have kids who desperately need me and I have to work. Let's pray I make the right choice and I don't have troupe receiving the treatment.