Weighing MS treatments and OMG INSANE RISK!

[ActiveMSers]

The topic of my latest blog stirs the pot when it comes to looking at risk when considering treatments for multiple sclerosis. Agree with me? Am I a misinformed idiot? ARE YOU ALL-CAPS GUY? Let me know....

UPDATE! Reposted on blog 1/30/13:
http://activemsers.blogspot.com/2013...-weighing.html

[Marinadca]

I am definetly a risk taker with treatments I think... when I was first diagnosed (Oct 2009) I wanted Tysabri...because for me looking at the efficiency made me think I was getting the crap drugs with copaxone.

Of course, the doctor wouldn't give it to me, and I ended up with copaxone for a year. Luckily the doc didn't put up too much resistance when Gilenyia...but I have to say that the reaction to the drug from some in the MS "world" has been very CAPS oriented.

We all have to decide what kinds of risks we are going to take, and I think we should be allowed to take them as long as we have all the info both pro or con.

I am amused by the OMG HOW CAN YOU TAKE GILENYIA YOUR HEART WILL FAIL!!! types of folks

[Madeleinemom]

I agree with you that we should be allowed to make intelligent treatment choices, altough I am not quite the risk taker that you are

Would love an oral option vs. the injectible I am on but have decided to await long term results of Gilenyia's efficacy.

[garyp]

What is the risk of the alternative?

A famous industrial age banker, JP Morgan, was once told by somone that they could not sleep at night because of their stock market investments. His response? Start selling, and when you start to sleep again...stop selling. (Note: The above is all highly paraphrased)

I suspect that members of this forum have a higher tolerance for risk than the general population of the MS community. We are here because we are and want to remain active - and we value that outcome, so are probably more willing than most to take some level of risk to achieve that benefit.

Just over 3 years ago now I chose to ignore the "I WOULD NEVER PUT THAT POISON CALLED TYSABRI IN MY BODY" advice. Was I in a hurry to take this step? No. Did I have reason to? Yes. Over the years, Avonex, Rebif and Copaxone had been used - and had either not worked (Avonex/Rebif) or had worked very well (Copaxone). But Copaxone after 8 years had stopped working for me and my disease had become very active. The last of several relapses had temporarily robbed me of function on my left side along, given me a few days in the hospital and impacted cognition.

What were my options? Stay on Copaxone and continue frequent relapses and be in a slow decline? Chemotherapy with its inherent risks? Tysabri and a 1 in 1000 risk of PML? Or do nothing and prepare for the wheelchair?

My conclusion? Tysabri. I concluded that my risk of the wheelchair was much higher. And I could mitigate risks of Tysabri through being hyper-aware of changes in my body and report them promptly so that any action could be taken quickly. I chose quality of life and accepted the risk I would need to take to achieve that. And I slept well at night with that decision.

I believe that all if not most of the second generation of treatments (Tysabri,Gilenia) that bring 60+% reduction in relapases/MRI activity compared to Placebo will bring higher risks. Science is pushing the envelope on the benefits that can be achieved...but in doing so higher risks will need to be accepted and weighed into the equation.

Each of us has different tolerances to the risks that life presents us with. Some will accept these higher risks. Some, for good reason, will not.

If you are not sleeping at night worrying about the risk of an MS drug.....then, metaphorically speaking, stop taking the drug until you start to sleep better!

[msma]

Thanks!

Thanks for posting this. I was diagnosed about a year ago and when I asked the doctor what was in the pipeline, she talked about Fingolimod (AKA Gilenya), but mentioned that she probably wouldn't move patients onto it right away. Fast forward several months. I was taking copaxone and developing new lesions. Having learned more about Gilenya and its effectiveness, she suggested I go on it. I work full-time, try to be active and am not eager to take on flu-like symptoms on a regular basis. I know that many will wait until there is more data and I support their decision. I decided to go for it. I'm planning to be talking 20 years from now about how I was an early adopter of this magical drug. Could it turn out differently? Yes and I realize that, but I'm prepared to take the risk to fight off more lesions and symptoms...and stay active.

[ActiveMSers]

The AAN last week released a study on risk tolerance that was pretty interesting. Men are FAR more likely to take risks. That's not too surprising. But the strange part: people would accept almost the same level of risk for Tysabri as they would for a total cure. Go figure.

------------------

HONOLULU -- Half of multiple sclerosis patients won't accept a mortality risk greater than one in 10,000 for a treatment proven to be highly effective for most patients, researchers said here -- therefore ruling out natalizumab (Tysabri) for most of them, at least in theory.

.... In addition to the natalizumab scenario, patients also rated their acceptability of a complete MS cure that could also cause "immediate painless death." .....

....Male sex: 1:2,000 versus 1:50,000 for females
Currently taking natalizumab: 1:1,000 versus 1:50,000
Seriously disabled: 1:2,000 or more versus 1:50,000 or less for mild or no disability....

http://www.medpagetoday.com/MeetingCoverage/AAN/25975

[ActiveMSers]

Encore edition is now on Blogger.

http://activemsers.blogspot.com/2013...-weighing.html

[HETA78]

Excellent post. Thank you for sharing. Again, I'm SOOOO happy to have found you guys. (I'm all about ALL CAPS and exclaimation points!!!!)

I'm on Copaxone but only week 4. I don't know if it's going to work for me or not. If it doesn't I'll try the next thing. And if that doesn't work, the next. I read about people saying the risks of DMD's outweigh the benefits. I get it, but that train of thought isn't going to work for me. To me, the risks of NOT trying to modify the course is way worse. Plus I'm a MS newbie with a lot of optimism. I still believe they'll find a cure....

[ActiveMSers]

We're happy you found us, too, HETA78. Optimism is contagious.

BTW, HETA can stand for a number of things...

Acronym Definition
HETA Hazard Evaluation and Technical Assistance
HETA Higher Education Transfer Alliance
HETA Humberside Engineering Training Association (UK)
HETA Habitat Engineering Technical Assistance
HETA Higher Education Telecommunications Association
HETA HARPOON Engagement Training Aid
HETA Honam English Teachers Association (Korea)
HETA Hot Electron Transfer Amplifier
HETA Homeland Environment Threat Analysis

I'm going with Hot Electron. That sounds cool and dangerous.

[sue w.]

Secondary Progressive / no drugs

Just found this question and, in case anyone is still looking for options, decided to chime in.
Dx'd with R/R MS: 2002
First symptom:ON
Mild symptoms for the first 7-8 years.
Was on Copaxone for the first 9 or so years. Actually started Copaxone when you had to mix it yourself! What a relief when it became available pre-mixed.
Around 2011, dx changed to Secondary Progressive. Really started having issues with balance and fatigue. Didn't feel I was having success with the Copaxone (which I was still injecting), so at that point, stopped all drugs. I read there are really no drugs for Secondary Progressive, and I was actually quite pleased to read this as I was SICK of injecting and site welts. Now I eat well, stretch, nap when needed, and I'm just fine with all that. No interest in taking any drugs. I get pain in my legs (RLS - Restless Legs Syndrome) that I have countered with compression socks and an inversion table. Stretching is, by far, by biggest friend.

[HETA78]

We're happy you found us, too, HETA78. Optimism is contagious.

BTW, HETA can stand for a number of things...

I'm going with Hot Electron. That sounds cool and dangerous.

I do like how Hot Electron sounds . HETA is Heather for the Ethical Treatment of Animals. It started when Michael Vick was in trouble for dog fighting and I had to come up with a fantasy football team name (yes, I said fantasy football). The name stuck and now most of my friends call me HETA instead of Heather.