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Wednesday, May 20, 2009

Multiple Sclerosis: Non-Toxic Drugs? * vs. Needs for Quality of Life ! *

  1. First, is an email I received today from Julie Stachowiak, Ph.D. of ms.about.com.
  2. Following her email, is my response to what is presently going on with me on my choices.
  3. After that, it would be nice to receive your responses, for ME and for others who might feel the same as me. PLEASE DO RESPOND if you can.

Subject: About Multiple Sclerosis: Non-Toxic Drugs?
from Julie Stachowiak, Ph.D.
I spent the weekend writing some articles (will come out next week) on Novantrone and Tysabri. I'll start by saying that these drugs can have amazing effects for some people - restoring lost function, slowing disease progression to a crawl, and preventing or slowing further disability. However, both drugs come with "black box" warnings and fairly formidable lists of potential side effects, interactions and contraindications. Even people who swear by these drugs will usually admit to at least a little bit of worry about the risks involved, eventually coming to terms with the statistics.

Wouldn't it be great to have some new drugs in the arsenal that didn't involve each of us doing a risk-benefit calculation before making the decision to take them or not? I'm not saying that we have found the answers yet - we haven't - but I am happy to see that research is being done on some of these more "friendly" approaches. Take care of yourselves, my friends.

Stuart's Response: Here I am, in the midst of completing paperwork to get me started on Tysabri and then I have to receive this email of the "BLACK BOX" warnings.Scary as it is already and me questioning my decision. However, I have already been on Avonex, Copaxone and now completing 7 years two months on Rebif.

What other choice do I really have, when my condition seems to be worsening.. Many others also have no choice but to turn to Tysabri.

Sure it would be great to have new drugs on the market without the arsenal that you speak about. But they don't yet exist and it might be 10+ years before we see this.Meantime why scare the daylights out of those needing to turn to Tysabri.I keep telling myself that I want "QOL" ( Quality of Life).. I am still walking right now. Needing a cane most often, but yet still walking and if this means to do Tysabri to keep from a wheelchair, then this might be my only option...
So though, now I have to have an image of a black box, while wanting my "QOL" - .......... MS SUCKS !! Regards, Stuart Schlossman


By using the comments link, please post what YOU would or what you may have already done, or if you just want to also say that MS Sucks, be my guest !!



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11 comments:

Anonymous said...

Hi Stu,

Switching to Tysabri is a tough decision. I've been where you are - wanting a better quality of life but not at the expense of life itself. Will I be the 1 in 10,000 who gets PML? That was 14 infusions ago. Tysabri has been a miracle therapy for me. I hope it will do the same for you.

I've been on Copaxone, Rebif and Copaxone again. I've tried LDN. I continued to lose my quality of life. While on Tysabri my walking has improved and I have energy that I havent had in years! In hindsight, I can say that I'm so glad I put aside my fears and switched to Tyasbri.

Stuart said...

Dear Anonymous,
Thank You for your reply and you really hit the nail on the head with your responses. Seriously!
If at all possible to email directly to me, I would like to chat more of this. Please if possible, to send email to: stuart@msviewsandnews.org
Best,
Stuart

Anonymous said...

Stu,

Congrats on making your Tysabri decision. I've been on the drug 2 years and 5 months. No regrets other than I wish I could have gotten on the drug years earlier. PML as a potential side effect is scary but more is being learned about it daily and there is a treatment intervention. I'm not scared of PML per se but I do respect the potential side effect and monitor myself accordingly(Do I have any new or worsening symptoms?). My plan going into the Tysabri treatment was to suspect PML if I had any new or worsening symptoms and stop Tysabri until PML was ruled out. Everything discussed to date supports that plan.

Chris

Mindy said...

Hi Stuart,

I wanted to let you know that I've been on Tysabri for about 2 years, and really like it, as much as one can like a drug. I tried avonex and had no luck, so my doctor and I decided to try Tysabri. After the first couple of treatments, my husband looked at me and told me that when he looks in my eyes, there's someone there, and there often hadn't been on Avonex. I think I'm more energetic, and I like not losing the day after injection to fatigue and sleep and chills. As for PML, it's scary but I guess all meds can have serious side effects. In some cases, benefits outweigh fear, and I read that they were working on something for PML, so...
In any case, best of luck to you whatever you decide.

Anonymous said...

I was in exactly your spot when I swiched to Tysabri 2 years ago. It's been very good for me-no side effects at all. I'm relying on the cane much less,bladder problem: solved. Tysabri has kept me working-that's HUGE.

Vern Beachy said...

Hi Stu;

I have been diagnosed with MS for 11 years and have had 31 monthly Tysabri infusions.

Quality of Life is paramount to me. After my third infusion I was able to get out of my wheelchair, leave my crutches at the door and I now walk 2 miles a day without any assistance.

I know the risks are high, but I am more than willing to take them.

Lauren said...

Hi Stuart,

This article by "Dr." Stachowiak is utterly ridiculous... Novantrone has been proven toxic to not only the body but to the heart muscle in particular which can cause permanent damage. Tysabri is not toxic at all.

See the following article wherein patients weigh the risks versus rewards of Tysabri:

http://www.chicagotribune.com/news/local/chicago/chi-ms-treatment-city-zone-20-may20,0,7650744.story

I've been on Tysabri therapy for more than two years & seven months, having just completed my 34th Tysabri infusion. If I could've been on this medication earlier, perhaps I would not have suffered a severe relapse in June of 2006.

Tysabri is a medication not to be feared, but welcomed.

Lauren

deej said...

Hi Stu, all the comments are different because MS affects everyone differently. I've been on Tysabri 3yrs. & will stay on it as long as Medicare is paying for it. Two docs said I am past the point of getting PML now, but who knows for sure? I developed neutralizing antibodies to Avonex & Betaseron; Rebif didn't seem to help & neither did 2 treatments of Novantrone. Never tried Copaxone. I was scared to try Tysabri. Now I don't think it's helping enough either, but scared to stop. No other options now until Clinical Trials are over. I've progressed from a walker to a scooter in the last 10 years--is that a Slow Progression-? I have to deal with an old back injury so I can't say for sure what is an MS symptom & what is a symptom from the injury. Good luck in deciding what to do, it's a tough one.

Burke said...

As a former Rebif user turned Tysabri user myself, I can certainly empathize with your decision. I started Tysabri in August 2007 and the "What if" PML scenarios still play in my head on occasion; however I think about it much less these days. One good thing I've found is that I much prefer the single IV every four weeks to the 3 sub-q injections of fire water (Rebif).

But the first company that develops a safe, effective, and more comfortable drug will definitely be getting my money in the future.

Good luck with Tysabri.

Burke

Stuart said...

My sincere thanks to Burke and all else who have and hopefully continue to enlighten me, and anybody else who might be contemplating Tysabri.

I have been using Rebif since it was FDA approved and marketed in 2002, except for my short Hiatus stint that you can read about on this blog.

These days, each injection leaves a large hard, painful knot, just below my epidermis.. and this takes weeks for each to disintegrate. Plus I do not think the Rebif is any longer being as effective with me, for how I have been feeling the last few months.

My thanks again to all who have responded...

Stuart

Jessica said...

hey stuart
i read on one of your blogs that your about to start tysabri. have you started it yet? dont be scared too. i cant rave enough about it. i couldnt walk in 2007 was in a chair then eventually a cane. now i am running on the treadmill. i cant say enough good things about it. i dont know the long term effects but once things are on an even keel for a while i think i am going to go off it. i go for infusion 11 this month.
let me know how you make out with it.
Jessica