Wednesday, April 15, 2009

They say timing is everything, don't they? A month ago I started the Fingolimod trial, and a few days later I got a nasty cold (an expected side effect of the Fingo). A few weeks ago I developed a new symptom and saw the neuro, but was assured the new symptom was not a big deal. Three days after seeing the neuro my legs went wonky, and I couldn't get Novartis Chick to call me back. A week after that I could barely walk, and still couldn't get anyone to call me back. The last time I had a relapse/attack/exacerbation (whatever you prefer to call it) I was chastised for not seeing the MD sooner. My neuro told me I had kinda missed the bus on taking the steroids at a time that might've affected the severity of the relapse. THIS TIME I went to the neuro and called the Novartis study people right away and nobody paid it any freaking attention! I am so frustrated with this impossible game of timing. When is it not-too-soon-but -not-too-late to call about feeling like a steaming pile of shit? Why do I always NEED to call when the doctor is overbooked, out of town, or just not feeling very interested in me that day? I'm not a huge fan of the steroids, but I do wonder if they would've let me avoid limping around the hospital for the last 2 weeks and making me feel like a zombie for a month. Now I wonder if they'll do me any good now that I'm STARTING to feel a little better. The Trial MD says yes, my neuro says no. What the hell?

Because of this recent relapse, many well-wishing colleagues and family members have more probing questions about the drug trial and what made me decide to get in it. When I explain to these kind and worried souls that the trial is blind, and that I may be on a placebo for 2 years they just totally lose their shit. "Oh my gawd! What if you're going UNTREATED for 2 WHOLE years?!," they exclaim. And then I give them my reasons , none of which are as brave as Bald Ben over at Did You Know Montel Williams Has That? implied in his recent blog when he mentioned me so kindly. He is now thinking of joining a trail too so I thought I should post my real reasons:

1. I'm afraid of PML. I know it's unlikely, but people underestimate the persistance of my bad luck. If there's a chance of something going wrong, it will go wrong for me. Murphy's Law has apparently been ammended to my own personal Constitution. And I'm intimidated by the plan being to "monitor Tysabri users very carefully against the threat of PML infection."
Really? How are they going to do that? Because I've already covered the fact that I apparently don't know when to cry "HELP!" How crazy will I make myself on Tysabri if I have to be on the lookout for everything and nothing? Because I relapsed while on Avonex (which my neuro considers functionally similar to Rebif and Betaseron), and couldn't tolerate Copaxone, Tysabri is the last of the FDA approved DMDs for me to try. And I know lots of folks love it and have improved greatly, but the one and only real-life person (not to imply that you bloggers aren't REAL, 'cause I think of yous guys as friends) I know with MS has done horribly on Tysabri and had a really hard time even tolerating the infusions. Plus, it's so fucking expensive I'm worried about reaching my lifetime limit of benefits before I turn 40. I'm just not ready to get on the Tysabri train.

2. I won't be a viable trial candidate forever. Right now I'm young and relatively healthy. I know having MS doesn't put me in the ideal health category, but I don't have cancer, heart disease, vascular disease, liver disease, reduced kidney function, GI problems, GU problems, or even high cholesterol. There's no chance of my becoming pregnant or wanting to breastfeed ever again. I can still walk (most of the time) and drive myself to the myriad appointments I have to keep for the trial. These things won't be true forever so I know that if I'm gonna try a trial drug, now's the time.

3. Fingolimod is a PILL. That is hugely significant to me. I don't personally have an issue with needles, but I'm sure there are plenty of MSers that do, and I love the idea of helping give those folks some hope for an oral DMD in the future. I do really hate the idea of having to make an appointment for an infusion every month indefinately as well, which is another strike against Tysabri. (Despite the fact that I am perfectly capable of starting my own IV and running just about any liquid I please into my arm, there's no way in hell those TOUCH people are gonna let me give myself Tysabri infusions. I wanna hold onto my habit of autonomous healthcare as much as I can.) I'm stubborn and I'd rather just stick myself unless there's tattoo ink involved.

4. It's only 2 years. I had more confidence in this reason before I had my 2 most recent exacerbations. I find it very disconcerting that I had one start in October '08 and the next start in March '09. That seems like too many, too close together, too soon after fiddling around with my treatment options. On the other hand, it took 2 years just to get diagnosed with this damn disease. And in the big picture sense of your life span, 2 years ain't shit really. Jeez, those kids on LOST were off the Island for THREE years and they didn't even bring back longer hair with them. Although John Locke did go from alive to dead to alive again. That's a pretty significant amount of change and he wasn't off the Island as long as the others... whoa, I'm way off track.

5. The chances of Fingolimod making me feel like shit were very, very small. And it doesn't, if I'm on THE DRUG. I researched the potential side effects of Fingolimod and didn't find anything too alarming. Macular edema and increased opportunisitc infections seemed a manageable trade off for free drugs and testing. Both of which are being closely monitored during the study which means I get to keeping ogling the cute opthamologist they send me to regularly. And it gives me a viable excuse to avoid patients with Shingles at work. (Just Shingles though, the rest of the cooties I'm still swimming in with the rest of the fishies.) Also, the trial does not require that I make any lifestyle changes. If I hadn't quit already I could've kept smoking, not that I want to. I can keep getting tattoos and keep doing my low-cal diet (I've lost 11 lbs!). I can travel, skydive, or just take my kids to the beach. Though I'll keep staying under the umbrella and spraying on the sunscreen because there seems to be increased incidence of skin cancers in Fingo-takers. Altogther, they aren't really asking too much of me.

So there it is. Not particularly brave or self-empowered motivations to do the trial drug. My hubs did encourage me by saying that it could eventually help a lot of other MSers, and I do sorta feel like I'm honoring the memory of my granddad (see previous post here). I'm not sure hashing out all my sideways logic really justified a long-ass post like this, but too late to turn back now.



Roll the dice,'s all just one, big crap shoot anyway. Or just one big crap...depends on my mood of the day WHICH way I choose to view it. LOL

There are no guarantees...I say, do whatever makes you the LEAST uncomfortable and the rest, be damned!

The Ardee Man said...

I feel sad reading ur story,i know what u are feeling or nt feeling (pardon the pun).Listen I live in New York and have some awesome docs ,,neuros, surgeon etc.If u need sombody fast that will help u Im sure I can help if u wanna fly up here.My first attack and I didnt know what was happening me I was diagnosed and on medication in a week. My cousin is married to a saint who is 82 years old going on 21 if u kn0w what i mean. He is a wonder of life. His Name is Joe Farrell of Irish desent. He had a terrible car crash a few years ago and had brain surgery in his late 70s and is now going around like a young man.He travels to south america with a team of surgeons several times a year and works on kids that never could afford or ever be helped, he truely is amazing. Only for him I would have been in a bad way.If u need help I can hook u up im sure.Dont hesitate to ask,Please.
I had an Mri today for check up and am waiting on the results.hope they are good and my MS hasnt progressed.
What really has helped me is trying to raise money for ms in a way that involves something I love.
E.g I never would have started my blog only for i was laying in bed and couldnt work because of my symptoms. So i said to myself what can i do if i cant move.What i came up with was music which i love and shite, talking bullshit.i Put the two together and have had a music funraiser in which i earned 3000 fo ms. We did the walkms and got 200 and when i go to ireland in june i have got 5 bands to play a mini festival all in aid of ms.I hope that eventually it will be as big as Live Aid.It sound like a long shot but u have to stay positive.Think big. MS fucked me, Im gonna fuck it back twice as hard.Dont take it and get depressed, i did that and got nothing for it.
Im not preaching and i know its hard but please try to keep ur chin up.If u fancy a trip to Ny dont hesitate.
Shane Gorman (the Ardee Man)
U on Facebook????

pUNKrOCKfairy said...

CHEESE- Have decided to forgo the 'roids 'coz they are expensive and make me a lunatic. Glad of it now because I am feeling much less uncomfortable. Thanks for your sage, and easy to accept advice.

Ardee Man - You might be on to something with your fundraising efforts. I do prefer to be rebellious (generally) and I shall look for more ways to tell MS to go fuck itself. Thanks! Also, I am on Facebook and I'll look you up. I love NYC! The hubs and I will have to find time to come and meet you and yours.

Bald Ben said...

Okay, I've been thinking a lot on this. The whole thing is a real huge steaming pile and I wish that someone would just have a nice answer for me. We all know they don't, but a bald guy can hope.

I think I might be leaning more towards Tysabri as of right now. Of course I am concerned about PML, but it’s really just in the back of my mind. I am concerned about PML like I am concerned about the Swine Flu. Sure anything is possible, but the media sure has a lot of good headlines.

However, what you said about helping break new ground is pretty powerful. If this damn disease is good for something, it might be pretty amazing if I can help make sure that others are better protected.

I wish this damn target I was aiming at would stop moving. It would be so much easier to hit.

Herrad said...

Hi PunkRockFairy,

Hope it all works out for you.
Pill must be better than injecting really hope you get some benefit from it.