More on the Multiple Sclerosis...
This morning I received the best comment ever, on my last post about MS and Avonex and the currently-available MS drugs. It read:
you have no clue about tysabri its been around for ten years being 'studied' and it is the only effective ms drug for reversing the degenerative effects of ms. please do some reasearch before you write your rubbish! avonex has had repoted pml deaths attributed to it and is only at best 30% effective and has nasty side effects. get it right and dont make judgements based obn heresay and rumours!
You all can read my response to said commenter (who cleverly named him/herself "truth" and included what I can only assume is a fakey hotmail email address so I could engage in a dialogue with him/her, should I choose to). But I now feel compelled, though I'm not sure why, to delve a bit deeper into some thoughts I've been pondering about the drugs and various treatments currently available for MS patients.
What follows is my own relatively-informed opinion. I freely admit that I am, by no means, an expert on these topics but I do follow MS/treatment news relatively closely, I go to MS Society-sponsored events to learn more about ongoing research, advocacy and treatments and, most importantly I think, I talk to people. I also follow a lot of MS-focused blogs that, while not conclusive evidence of anything one way or the other, nevertheless provide interesting anecdotal information and an insight into the day-to-day lives of MS sufferers, particularly those who have dealt with it longer than I have.
So, with all that said, if you care to read (more of) my thoughts on Multiple Sclerosis and the treatments available, feel free to read on. As always, I welcome constructive, thoughtful criticism, alternate viewpoints and questions of all kinds. (Being told I "have no clue", alas, is not exactly constructive nor thoughtful but... well, I'm letting that comment stand for the moment.)
Opinion the first: I have absolutely no problem with Tysabri. Seriously. I am pleased it's on the market, I think it's fabulous stuff and I'm thrilled that progress is being made in the fight against MS. It has been shown in clinical trials (as reported by ThisIsMS.com to reduce disability progression by 42 percent and reduce the rate of clinical relapses by 67 percent over two years. Anecdotally it's been shown to even help reverse the effects of MS. (Avonex, by comparison, has been shown to reduce disability progression by 37% and the rate of relapses by 44%.) It is, to put it bluntly, good shit for a lot of people.
That said, I do not believe Tysabri is the right choice for everyone, nor would I guess any thinking person would disagree with me. From the Tysabri patient guide:
Because of the chance of getting PML, TYSABRI is generally recommended for patients that have not been helped enough by, or cannot tolerate other treatments for MS.
When it was presented to me as one of the treatments available for MS patients, I was told about the increased risk of Progressive Multifocal Leukoencephalopathy (PML) and because I had not yet tried any of the other drugs at that point (remember, I'd just been diagnosed) my doctor did not feel it was the best option for me, given my age and the current progression of my disease. And at the time, the thought of taking something that could potentially result in death seemed a bit premature since I hadn't tried anything else.
Now that I'm a bit farther into my experience with MS and the Avonex and the side effects and whatnot, I'm starting to rethink my options. Right now I'm in an ok place with the Avonex; it's fairly well-managed right now. But if things should change, I'm not convinced I would switch to Copaxone overr Tysabri.
As I said earlier, I am definitely pro-Tysabri. I'm just not a rabid champion of the drug at this point, because it is NOT a miracle drug and it is NOT a cure for MS. For that matter, I'm really not a rabid champion of any of the drugs. If something came out that was showing true potential for eradicating the disease - I'll be first in line to support it. Until then, I continue to view all drugs with some skepticism and through the lens of my own treatment needs.
Opinion the second: I don't believe that being on a "disease modifying treatment" is the right course for everyone. I'm not even 100% certain it's the right choice for me. But I continue to take the Avonex because it's marginally tolerable and it's supposed to be helping me. Supposed to is the key phrase there, because it's not a sure-thing and it's not something that's making itself readily apparent on a day-to-day basis. The only reason I know it's getting into my system is a) I feel the side effects and b) my liver didn't like it much, for a while there. I'm honestly not even sure why I've not gone off the stuff by now. Fear, perhaps. Hope, maybe. Indecision is probably closest to the truth: I really don't know what the best next-move is so I'm sticking with the status quo while I think it through and wait for guidance.
Opinion the third: There is currently so much information out there that I have a very, very hard time separating the wheat from the chaff, so to speak. I do not, typically, trust other bloggers to provide the "best" or most accurate information - rather, I tend to lean towards "official" sources: my doctor is a key contributor - he reads widely and has years of experience with this stuff - and I like to find opinions written by MS-specialists and other researchers at MS-focused clinics. And, though they are horribly biased, I also tend to frequent the websites of drug companies (though not the patient forums - those scare me) for information-gathering purposes. At the very least, I know they stand behind the results of their clinical trials and those are regulated by the FDA.
Still, when it all comes down to it, it really doesn't matter a whole lot what the press write, what other bloggers think, whether the commenters on your post think you're misinformed: the most important thing, it seems to me, is that you have a doctor you trust with whom you're treating the disease in the way that's best for you. When I started on Avonex, I chose it because it appeared to be the best combination of side effects, dosing schedule and efficacy for me. Those two little words are important. For ME. Not for you, not for Fred down the road, not for my sister or mother or brother even. For me.
The thing is, you don't know what you don't know, and nobody knows how they're going to react to a drug, any drug, until they try it. I know several folks, for example, who take Paxil for depression and anxiety and it works very well for them; but I once tried it for a week and it made me want to chew everyone's face off. That doesn't make it a bad drug; it just makes it the wrong one for me.
I know many others are more aggressive with their MS treatments than I might be. Others are battling it head-on and "not letting it keep them down" and trying every possible way they can to keep themselves "healthy." I don't think I'm built that way. Some may see it as apathy, I guess, and maybe it is; but I just don't feel compelled to spend every second of my life obsessing about whether I'm treating this disease the "right" way. I do what's necessary to stay as happy and healthy as possible, but - right now at least - I'm just not interested in depriving myself of the things I love because it "might" help me. I could get hit by a bus tomorrow - you just never know - and I want to live my life as fully as I can. This is the same reason I'm not a proponent of "Everyone Must Be on a DMT!" Doing something because it "might help" isn't always the best reason...
Anyway, maybe I'll feel differently (or regret) down the road; I don't know. For now, it feels like life is too short to not eat the occasional piece of pie when I want one.
Comments
Very well said, my dear. I applaud your tenacity and clarity of "getting to the friggin' point"!!!
I must say, FOR ME (hint hint), I never received as many personal emails and blog comments as when I was on Tysabri briefly...even now, if I type the word in a blog, someone will usually post a comment about it and correct any and all information I write. I, like you, fully believe treatment options are a matter of personal choice. There is currently research being done at Johns Hopkins by a very clever scientist of MS, who is discovering we DON'T all have the same type of MS! She has isolated specific histological patterns of the disease from autopsied (that means post mortem folks)brains with MS and patterned 4 different types of cellular damage that occurs...this is exciting research and may eventually explain WHY certain drugs work for some and not for others...because the disease PATTERN is different!!!
I had several people "question" my anaphylactoid reaction to Tysabri on my own blog and via email...it was as if this was somehow WRONG of me to report my own condition that was confirmed not only by my neurologist, but also BIOGEN IDEC...I was immediately taken off the medication, much to my own disappointment. THE FACT ALSO REMAINED, THAT AFTER FOUR MONTHS/TREATMENTS/INFUSIONS OF TYSABRI, MY MRI CONTINUED TO SHOW INCREASING DAMAGE AS DID MY DISABILITY SCALE EVALUATION. Bottom line: The drug wasn't working for me and also posed a very risky side effect of anaphylaxis...and it was the TOUCH people/BIOGEN IDEC who refused to continue to allow me access to the drug. I also know of people the drug has done wonders for and I am very happy and relieved to hear their stories as well.
I applaud you...and your ability to state your opinion...which is why we LIVE in this country. Right or wrong, we are ALL entitled to our own opinion and experiences. And OWNING those opinions outright versus spewing them from behind the safety of cover is the ONLY way we will continue to exercise this right.
Linda D. in Seattle
Posted by: Linda D. | March 16, 2007 12:45 AM
You go girl! What ever you think is right for you is always the RIGHT decision, no matter what others may think. As we both know I figured that one out this past December. Hope you feel better after that long post, though your fingers are probably rather knackered!
I'm off to read some papers on neutrophils & B pseudomallei, I know you're really jealous!!!!
TGIF, xxoo
Posted by: Ra | March 16, 2007 03:33 AM
my opinion about tysabri is pretty much 100% the same as yours.
i also agree that life is too short to obsess over whether you are doing ANYTHING "the right way." on the other hand, and this doesn't just apply to ms, i know that i am responsible for my own health and happiness. there are never any guarantees that anything i do for my long term happiness will help me in the long term. that doesn't mean i shouldn't try to better my odds. it's a cost-benefit analysis. of course life is too short not to eat dessert once in a while. but it is also too short to eat junk food for every meal. there's no guarantee that eating healthy will make me healthier, but the possible benefits of eating healthy make it worth it not to live on junk food. but if i generally eat pretty healthy, it's really not going to make much difference if i eat a piece of pie once in a while. it's not worth it to suffer for such a small additional benefit. so i don't obsess about everything i eat, but i also don't eat all the junk i might want to eat.
with anything, there is a point at which the possible benefit is worth the trouble, and there is also a point at which it's no longer worth the trouble. i think it's absolutely worth it to take medication just because it MIGHT held my ms, UNLESS the medication has so many downsides that the potential benefit isn't worth it. or, as in linda's situation with tysabri, it not only has downsides but also it becomes evident that the potential benefit is not translating to actual benefit. of course, in that situation that particular drug isn't worth it. but i have a long way to go before i get to that point. if the avonex doesn't seem to be worth it, i'd try copaxone or tysabri, and if that didn't work i'd try something else. with all the new drugs being developed, i think there's a good chance that most of us should be able to find at least one medication that is worth the potential benefit.
Posted by: jen | March 16, 2007 07:51 AM
It's hard for me to wrap my mind around all the MS info but I do know about the process of accepting a situation (whether it be a disease, getting over or through the end of a relationship, or whatever). It takes time and may take or involve a series of steps or levels. All in all, it's difficult and not darned easy. Being with and talking with friends or those who've been thru the same, via email or in person, helps, but doesn't solve it. Unfortunately, it just takes a very long time--in my case, it's just an ongoing part of my life. MaryO
Posted by: Maryo | March 16, 2007 01:51 PM
Zee,
I think you pretty much summed it all up adequately in your last sentence: "...life is too short to not eat the occasional piece of pie when I want one." :-)
I wholeheartedly agree with that statement-- metaphorically speaking, you can't live unless you do.
Paul
Posted by: Ocean Breeze![[TypeKey Profile Page]](http://www.rathnait.net/blog/nav-commenters.gif)
|
March 16, 2007 04:47 PM
Hi Zee, my name is Lauren - and a few that have left comments here, have also left comments on my Blog as well. I feel that comment by "truth" was just plain rude, unjustified, and completely uncalled for. As a matter of fact, I had left a Tysabri comment recently on Linda's blog and apparently she was irritated by it, which was not my intent at all Linda, and I'm so sorry if you took it the wrong way. I was just stating my opinion, but again, I apologize Linda as the last thing any of us need is added stress.
With that being said, I would like to correct 2 statements you made Zee re: Tysabri - it is not my intent to nit-pick, but to provide accurateTysabri info: Tysabri now has 3 yrs proven data - See http://elan.com/News/full.asp?ID=910437
With respect to PML-post the Tysabri label, the authors of the NEJM attribute PML to "diminished immunosurveillance", not to Tysabri.
I happen to agree with both you and Linda that Tysabri is not for everyone, and further, it is not a cure for MS. And for those it does help, it is a blessing for them. Each person has their own comfort level when it comes to risks, side effects, and efficacy %'s of the different DMD's.
I wish you much continued success on Avonex, Zee. And success to all MS'ers in their choice of therapy.
In my humble opinion, knowledge is power, when it comes to fighting our disease (which is different for everyone).
Be well, best wishes to all. Lauren :)
Posted by: Lauren | March 16, 2007 06:28 PM
Zee,
So sorry to use your blog to reply to a comment left here about my comment...that said, I feel I should clarify for Lauren my concerns about the comments and personal emails I have received regarding Tysabri on my own blog!
Lauren,
I also applaud YOUR tenacity and your benefit from Tysabri. Unfortunately, there seem to be many out there that have an extremist view about this drug...for everyone! My comments here on Zee's blog were not regarding YOU specifically. I, too, have received personal emails and other comments (which I delete at will) from what I can only refer to as the "Tysabri Police"...responses questioning my medical condition, my doctor's decisions and assessments, etc. It is true, if I type the word "Tysabri" in my own blog, I will have nearly a hundred hits that day as compared to say 20-40! This gives me great pause...who ARE these people and why do they care so strongly (and sometimes vehemently via personal emails) if I report my OWN experiences and MY understanding? I would feel the same way if Avonex or Copaxone received the same attention and my own experiences with THESE drugs were "watched" so closely...but the truth of the matter is, nobody seems to give much thought to my past experiences with these drugs...which were ALSO not favorable for my MS.
I am very VERY happy there is now a drug available that seems to be helping so many people and I am truly disheartened it did NOT work for me...but I will not alter the reporting of my own experience to satisfy or pacify what I can only describe as "extremist" views, which again, I am not referring to YOU. Please accept my apologies if my comments here on Zee's blog were perceived as a personal attack of some kind...this was not my intent, as I AM speaking to a larger crowd.
Linda D. in Seattle
Posted by: Linda D. | March 17, 2007 12:40 AM
Heyyyyyy now...,
(((((hugs for all))))! (Who can pass up a hug full of forgiveness, love and patient advocacy?) heehee.
I think we are all on the same page. Have a good one guys.
Lauren :):):)
Posted by: Lauren | March 17, 2007 12:41 PM