Saturday, September 25, 2010

It's human nature I guess

Ever wonder why the nightly news is always negative? Why we will zip right by an amazing sunset, but give us a good car wreck and we are slowing down to take in ever gory details? I guess it's only human nature to be fascinated with the ugly side of life.

I went to a message board for people with MS. Anyone who's had MS for any length of time has been there, I'm sure, as it's probably the biggest one for our condition on the web. I used to hang out there quite a bit back before the trial started, and even well into my first year of the study.

Then one day I realized there is life outside of MS and I was feeling so much better on the Fingolimod (ok, ok Gilenya) that I wasn't dwelling on my condition as much as getting back to the business of living. Once I broke away from that message board my head became more clear and my depression started to lift. I attributed it to the medication and the relief of finally having the relapses subside.

Well, yesterday I went back to visit and see if anyone was talking about the pill. I mean, I'm so giddy with excitement that I just had to see what folks were saying. I found a thread where the mention was made of the drug getting approval, and while most folks seemed hopeful, several others were quick to point out the serious side effects.

I was overcome with an urge to let everyone know just how much good it has done for me, so I posted.

Imagine my surprise and hurt when someone responded that they were tired of hearing good news and wished someone who'd had side effects would post.

Really?? Good news about the long anticipated PILL FOR MS was something they didn't want to hear?? I know I'm Novartis' #1 fan and I feel I owe them my very health as I know it today, but they ain't payin' me, people. This is real and it's my genuine experience. I haven't been blogging for the past 3 years just to string you along and lure you in so Novartis can finish you off with their pill. True, your mileage may vary, but come on! I"m not the only one out of the 1250 or so trial participants (in what has been touted as the largest clinical trial for MS EVER) to have a positive outcome.

What? My experience ALONE got the FDA to say "ya know, that patient #008 at that Florida location seems to have done really well. Ah, what the hey, let's give it a rubber stamp and call it a day."

I'm not buying it.

Especially after the Tysabri fiasco, don't you think they are crossing t's and dotting i's these days when it comes to immunomodulating drugs??

So I left a comment saying I was sorry to have been the bearer of good news and that I didn't realize they weren't looking for that.

I won't be going back. I know that a lot of great folks are there and that there is a lot of suffering going on and people looking for camaraderie, but there is also a lot of negativity. I don't need that in my life.

There are too many beautiful sunrises I want to pull over to watch. I'm not stopping to see the train wreck, and if you wanted me to tell you about it I guess you'll just have to wait for the evening news instead.


  1. I tried to post a few links to this wonderful news on other MS boards and there are many posting some scary things. Some sound very misinformed and the fear seems to spread. Very sad, but like you said..."human nature I guess".

  2. Thomas: thanks for the link. I went and posted. :P

    Tamar: You and Thomas and others like you are the reason I keep blogging. If even one person gets something out of this -- even if it's just a laugh -- then it's been worthwhile.

    One of the hard parts about getting into this trial was the thought of sticking myself with that IM needle every week. Even after 8 years of Copaxone, that big Avonex needle scared me.

    But I bucked up and after a week or two it was old hat -- it actually hurt LESS than the sub Q needles.

    Come to find out it was water the whole time. LOL I stuck myself IM 52 times in the name of science.

    There are lots of people out there who are doing well on this stuff. Otherwise how could the data have shown a 50% increase over Avonex at reduction in relapses?

    Personally, I believe that number is modest. Going 3+ years relapse free is something I would never have dared hope for when starting this trial.

    I am mindful every day about my good fortune and that it can turn at any time. I sure don't take this for granted. I also can't quit singing Gilenya's praises.

    Maybe years from now there will be some unforeseen cumulative side effect that makes me wish I hadn't started, but even if it comes to that, the quality of life it's giving me now is priceless.

  3. FYI, back in June we purposely scheduled a neuro visit for today with the hopes of being able to discuss Gilenya this afternoon!!! To have something positive happen to my wife that we actually planned (LOL) is a real jolt in the arm, no Copaxone pun intended! :P After the Antegren (Tysabri) setbacks and the Dirucotide failure, this new hope is a reality!

  4. How exciting, Thomas! I'll be thinking of you both today and hope you get some positive news!

  5. I'm w/you Jeri, I hardly ever go and post any longer. It is so sad to see so many people who cannot see beyond their suffering. Of course, I don't know if I am on the real drug or not, but like you, it has been life changing for me and I will be devastated if I cannot find a way to keep taking it. I go in this Thurs. for my real dose and get my coveted three month supply and then I'm cut loose.

    I must say that although I am a huge fan of Novartis as well for changing my life, I do feel as though us Fingo heads have had the rug pulled out from under us. I hope that they come through in helping especially us lab rats afford to continue taking this med ications. Afterall, it was us lab rats who helped get them FDA approved.

  6. Sigh. It was originally thought by many in pharma land that Gilenya would cost about $30K (gulp) per year. Then this came out yesterday:

    With Merck's Cladribine oral pill having a setback in Europe it makes you wonder about the cost now being $18K more than the original estimation. I guess no immediate competition means they can name their cost for now...THANKS BIG PHARMA!!!! Sorry for venting or if this the right forum to even do so! I know I'm ecstatic at this new treatment option but bummed by the prospects of figuring out how to pay for it.

  7. I too have had amazing success while participating in the fingolimod trail the last 2 years. I have traveled from Tampa to Sarasota diligently to all of my appointments becaus I believe that this medication can be bright for my dark tunnel we call MS. I wish you all the best of luck, and thank you for your detailed, and often humorous blog; it has helped to read about your experiences while I went through many of the same things during the trial (it's nice to hear from someone that can relate ;)


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