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.

9 comments:

Thomas said...

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".

http://braintalkcommunities.org/forums/showthread.php?t=94179

Tamar said...

Your wonderful blog gave me hope. It showed me that yes, there is someone out there who has been taking this pill and wasn't immediately striken with herpes and cancer and what-have-you.
I know the forum and have posted there during relapses when I just wanted a shoulder. I clearly remember the snide "people who only post here when they are having a relapse aren't really a part of the community." That did it for me. I'm supposed to stick around and dwell on this while I'm feeling ok? No Thanks.
On approval day, there was a Facebook thread FULL of "Not for me, oh the side effects will be awful, I'll stick with the shot!" I couldn't believe it! I thought there had to be at least one person sharing my elation for the news! I posted my "OH, happy day!" and never looked at the thread again.
I feel for my fellow MSers, I don't want to dwell with them. December 17th I meet with my Neuro to discuss the monitoring needed to start Gilenya, and I couldn't be happier now that I no longer have to find the courage every week to stick that IM needle in my thigh!
I thank you for your constant positive outlook in your blog about living, not just living with MS.

TickledPink said...

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.

Thomas said...

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!

TickledPink said...

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

lynn said...

That's why I avoid the MS sites. I don't need that kind of negativity in my life! Here's what I posted to a forum that I moderate

It might mean nothing to most of you, but to me it means no more needles, no more every other day with flu-like symptoms, no more getting up the courage to stab myself - again, no more painful injection sites, no more red spots up and down the underside of my arms (looks lovely in sleeveless outfits and bathing suits)...a year-and-a-half with no new symptoms (count 'em! A Whole Year And A Half!!!)

JesswithMS said...

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.

Thomas said...

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

http://www.bloomberg.com/news/2010-09-30/novartis-gilenya-ms-pill-to-cost-48-000-a-year-update1-.html

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.

snminnow said...

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 ;)