Why Wait – #51

So here I am , eight months into treatment with no noticeable changes other than that I am sick once a week. I am hopeful that my side effects will continue to improve but know that they will remain to some extent. I have seriously considered Tysabri as my MS drug of choice since my diagnosis. Initially, fear of PML kept me from moving forward. After significant amounts of research and visiting websites like http://www.mspatientsforchoice.org/ I am more convinced that Tysabri is the answer for me. Yes there are risks, but there are risks will all drugs. I the birth control pill for many many years and never worried about blood clots or stroke or all of the other things that can happen. Those side effects are highly publicized but they haven’t taken the pill off the market.

Doctors seem hesitant to recommend Tysabri unless someone with MS is getting worse. Why wait to fix the problem when you have a better chance of preventing the problem to begin with. Lauren, an MS patient and Tysabri advocate is someone that I have been paying attention to since my diagnosis. See her blog…. LivingwithMS

I recently posted a comment to Lauren. She was on Tysabri before it was taken off the market and when she could no longer receive Tysabri her health declined. She is back on Tysabri and seeing improvement but with the decline, things are not improving as quickly.

I wrote:
Lauren, Do you think you would have considered Tysabri if you were still in the early stages of MS? I am currently on Avonex and am having miserable side effects. I have not approached my neuro about Tysabri but always think that if I get worse, that would be my choice. Then again, I think….why wait!? Would love your input.


Lauren Responded:
Hi there CC! “Lauren, Do you think you would have considered Tysabri if you were still in the early stages of MS?” You betcha! I would have been all over Tysabri like flies on ummm, errr, well you know (wink)”I am currently on Avonex and am having miserable side effects.” Avonex – ugh – the pits! Been there, done that CC – I did Avonex for 6 months and wished someone would shoot me with a .45 Calibur gun the day after each injection – so I hear ya all too well (biting lip). (((special hug for you CC))). “I have not approached my neuro about Tysabri but always think that if I get worse, that would be my choice. Then again, I think….why wait!?”Awww honey – As one of the very knowledgeable neuros of the Advisory Panel to the FDA pointed out at the Tysabri hearings in March ’06…”Time Is Brain”. My bad relapse (that left me wheelchair bound) hit me out of the blue without Tysabri’s superior efficacy of 68% to protect me from it. The Tysabri Label is clear: “TYSABRIยฎ is [for] …patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations.”If my neuro wanted me to wait, I’d ask her/him point blank, “Wait for what??? For me to get worse??? And possibly be left with permanent damage from a relapse that hits me out of nowhere?!?!?” If she/he said “yes, wait”, I’d say to them very loudly so their MS patients in the waiting room could hear me (heehee), “It’s MY body, MY disease, MY life and my MS therapy med should always be MY choice…and then I’d promptly find a new neuro, never look back, and say a HUGE prayer for their remaining MS patients.

You can see that Lauren is passionate about Tysabri as are many other MS patients. Lauren was instrumental in getting Tysabri back on the market. See her website and this letter WLF Published Legal Opinion Letter for more on that.

So, why am I waiting? I am not afraid of the potential side effects. My body does not love Avonex. The potential expense of Tysabri does not scare me.

I am waiting because I don’t want to scare my family. They have heard the negative side of Tysabri and I think they think it will be too aggressive right now. I know that the adult portion of my family will research it further and in talking to me probably see that this is the right direction. The younger portion of my family (daughter) will be the hard part. I will have to educate her so that she is not scared that this drug is going to kill me. It’s hard enough having a parent with an unpredictable disease let alone a parent with an unpredictable drug on a somewhat controversial drug.

I am going to make an appointment with my neuro as soon as I can get in.

It’s time.

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One response to “Why Wait – #51

  1. WOW Courtney! I had no idea my Blog entries made such an impact on you (I better watch my language, eh? – wink). I skimmed through your Blog, and you remind me so much of myself when I was first dx’d in 1976 – and although I didn’t have any treatment options back then – it’s your attitude that reminds me of me.

    Furthermore, I can tell from your posts that you are already your own patient advocate – and have been for awhile now.

    If I’m not mistaken, Dr. Foley is one of the better (if not the best) neuros in Utah – and is very knowledgeable re: Tysabri – you lucked out girlfriend! ๐Ÿ˜€

    I commend you on your quest for wellness, including your quest for Tysabri – I pray that Tysabri gives you the same hope for a better Quality of Life that it has given approx. 10,000 of us on it – with 300 patients being added weekly!

    Positive = Possibilities – Negative = Nothing…Wooohooo, you go girl!

    Much love and (((hugs))) to you CC and to all your friends and family, with special thanks for posting links to my Blog and to our website. It is clear to me from your Blog that your intentions are the same as mine: “To help others with MS with knowledge and emotional support”.

    Your daughter, Bailey, should be very proud of you. All my best dearheart, and keep me posted on your upcoming neuro appt, please. Lauren ๐Ÿ™‚

    PS: You might want to correct the topic line in your Blog that reads: “Diagnosed with MS in July 2007“…am I in a time warp or sumthin? lol ๐Ÿ˜‰

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