NeuroTalk Support Groups - Another PML Case in Europe, and US PML Patient #6 Dies

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Another PML Case in Europe, and US PML Patient #6 Dies (https://www.neurotalk.org/multiple-sclerosis/66967-pml-europe-pml-patient-6-dies.html)

Quote:

"Those odds might increase to 1:500 or 1:20, and I would suggest that might make a difference to many people, even some that are currently on it. Personally, I would not choose Tysabri at 1:1000 (or slightly more), "

I find that statement very interesting coming from someone who smokes, whose risk of lung cancer has got to be a lot higher, and also affects family members living with them.

Why the concern over PML and Tysabri?

Quote:

Originally Posted by 4boysmom (Post 437515)

I see two different situations here. If a person chooses to smoke, he/she accepts the risks involved with that.

And "why the concern over PML and Tysabri?" ....hmmm, if one has to ask that question, well...

Harry

I don't quite understand what you are saying Harry. I was remarking that lady express 44 would not take the risk of tysabri with odds of 1:1000, yet she continues to smoke.

Odds of lung cancer are more like the 1:500, and 1:20 with smoking. One report I read recently stated 1 in 4 smokers would develop lung cancer, and most died within 18 months of developing the disease. A lot worse prognosis than PML with tysabri. But with all her research I'm sure she knows that already.

She wants everyone to have the right figures to base their decisions on whether or not to take tysabri. I just wonder why it is so important to her for us on tysabri, and those future users to know whether we're dealing with 1:1000 or some other figures. Yes, there is a risk. I answer those questions every infusion I get. Yes, I feel crappy for 1/2 hour after the infusion, having chills and headaches that aren't a lot of fun. The rest of the month I'm super!

Any med we take has an inherent risk. And it is a choice we make, just as smoking is a choice we make. I probably lived for many many years not knowing I had MS. I know for sure I went for four years with MS before being dx'd because it is a symptom that remains with me.

I felt and did much better on no medicine. It is a choice now to be on tysabri to keep from getting disabled 20 years down the road. I plan on living a long, long time.

Tobacco, drugs, alcohol, food, etc. are very strong addictions for some people, and in my case, smoking was one I picked up when I was 12 yrs old. I have tried to quit (as I mentioned earlier in this thread, when you asked about my bad habit), but I have been unable to do it.

Tysabri is not an addiction, and I am no longer 12 yrs old.

I don’t claim to be perfect, but just because I haven’t been able to manage one bad habit, doesn’t mean I am not entitled to make adult decisions about whether I want to take on additional risk, does it?

I am not making judgment on your personal choices, or asked you about your imperfections, 4bm. I don’t care what YOU do.

Cherie

Quote:

Originally Posted by lady_express_44 (Post 437419)

There are plenty of subjects that don’t interest me either. I normally just don’t follow those threads. :cool:

Nailing these numbers is not about “the debate” over who is right or wrong. Frankly, even I couldn’t care less about that. This discussion is about giving people the information they need to make fully informed decisions . . . no matter WHAT the number is.

Don't get me wrong, Cherie. this subject does interest me. :) I follow the Tysabri story pretty closely. I have friends on this drug, conversations with my neuro and ms specialist about this drug, and might have to consider taking this drug in the future (like anyone else with MS, I realize it behooves me to keep options open). I'll continue to take an interest in Tysabri threads.

I know you're a numbers and stats girl, I can appreciate that - we're similar in that respect, anyway. Whether you continue this discussion here is totally up to you of course; I have no say about that and it's a-okay with me.

I just wanted you to know that some of us are not waiting to hear the verdict you and whomever else comes to, because we've already made our well and fully informed decisions in partnership with our respective neurologists; which ultimately, is as it should be.

For all the rest, I hope they stay tuned if that's their desire (and that they follow up with their neurologists after the fact).

You do make judgments.

Quote:

What has annoyed me personally though, since the very first questionable event with this drug/company, is there have been a handful of very vocal people (including those who are not even on it) who continuously deny every unfavorable event or issue surrounding this drug. Comments such as:

- “she didn’t really have MS” (so therefore that Tysabri/PML case doesn’t count), or
- “he took an immunosuppressant or immunomodulatory drug in conjunction” (and that’s the ONLY reason he got PML), or
- “there is a rumor that he might not have really had PML” (so we won’t count that one either), or
- “those people in Europe aren’t on TOUCH” (so “perhaps” the PML wasn’t caught early enough... “oops”), or
- “she might have died from another treatment” (even if it THAT treatment was only required to combat the PML caused by Tysabri)
- Etc.

You like to correct everyone and show how your research is better.

Quote:

- you don’t need to worry about ME being biased towards any treatment option, as I have had MS for 18+ years and have never even been on any DMD. Either way, it’s not a competition, at least from a patient perspective.

However, since you are missing some of the information you need to make an informed argument, I will provide a very quick synopsis on the numbers . .

Quote:

If you are more comfortable quoting whatever numbers you feel ok with, that is entirely up to you. I will stick (and answer) to the numbers I believe are correct. If reality (from someone else’s perspective, that apparently you don’t agree with anyway) “scares” you . . . perhaps you shouldn’t be have taken the risk associated to this med . . .?

You didn't answer my question.

And before you say I didn't bring up your bad habits, I know full well that my being overweight is a problem with my MS. I'm trying to lose the weight, I get up and walk every morning to keep my body moving, etc. Food is a necessity that can also become an addiction. But I blame myself for that addiction, just as smokers have to blame themselves for their addiction. It is a choice for both of us.

sorry but it seems this thread just continues to go downhill and so is now closed

If relevant data is found on this topic, please start a new thread for that and take the personal disagreements to PM

thanks