Q: To medicate (or not?) - new here

[TJ1]

Hi folks -- I'm new to the board -- good to meet you. Mostly I am hoping to get a feel for your take on medications - pls see below for the question...

I've had a couple of MRI since being Dx'd 18 mos. ago and disease is progressing (i.e., new spots), but, as I say, I have no problems "on the outside" -- i.e., the brain spots may be spreading, but *I'm* the same w/no loss of function.

So here's my QUESTION... I am under the care of an outstanding neurologist, who specializes in MS, but I Do Not Take *Any* MS Drugs....

They've been offered to me (and I certainly see the case for taking them -- I've got MS for goodness sake!) but... um... I don't want to (until the disease really rears it's head.)

And, yes, I know that when/if it does, you're then dealing with *that* reality and you can't go 'back in time' and start on medication, you have start from wherever you are...

But... still... I'm freaked out by the medications (more than the MS, so far, anyway.)
..

SO.... Am I crazy? What do you guys do?


THANKS, in advance, for your wisdom.

[TJ1]

p.s. -- if *don't* take an MS drug, pls chime in

OK... it's me again. I just read Dave's cogent, compelling blog posting on why he takes an MS DMD drug -- and more to the point -- why he believes anyone who doesn't is crazy...

His points are hard to argue with. Really hard to argue with.

But, still, about half of people with MS elect NOT to take a drug... (Heck, I'm one of them.)

So... if you DON'T take an MS drug, please chime in on WHY you don't.

C'mon, it's an anonymous forum -- clue me in...

(My reasons are in my first post, a couple of minutes ago.)

Beyond that, how's it going for you so far?

THANKS all.

[ActiveMSers]

Nice to meet you, TJ. Glad you found my blog (http://activemsers.blogspot.com/2011...arguments.html)

While many of our members take DMDs, a number have opted to go drug free--and they are still my friends. And I don't think they are crazy. Well, not that crazy, ha. I'll shut up now and let others have their say....

[celia]

medicate or not

First optic neuritis: 1983
MS diagnosis: 2002 (2nd exacerbation) - neuro did not recommend medication
4th exacerbation: 2010 - new neuro. On Copaxone since May, 2010.

This is a "benign MS," which was happily working on my nerves for years. If I'd started the meds earlier, I might still have non-numb feet, non-problems with bladder, fewer episodes of blurry vision, and more information coming in from my senses that I could totally trust.

Yes, nothing much more might happen this year - but you'll kick yourself later for not trying to hold it off. As Dave Bexfield demonstrates, healthy living does little or nothing to postphone MS development. It's not type 2 diabetes or heart disease.

Plus, shots aren't so bad, once you get past the "ick" factor. Main thing is: how's your health insurance?

[AMFADVENTURES]

To medicate or not

At the time I was diagnosed (1999 and after 9 years of symptoms) my work situation was not compatible with the use of any of the available DMD's. Because I had 3 children in or near college age, and because my MS was only just becoming outwardly visible, I made a conscious decision against treatment so that I could continue my present career path. When that career path ended 5 years later, I revisited the treatment question but the subsequent loss of health insurance made the decision against treatment for me. I have only recently regained some insurance and will be considering treatment again as soon as I find a neruo under the new plan. However since I am a 20+ year MS veteran now and probably secondary progressive or close to it, treatment may still not be an option.

In hindsight and if I had the information and choices available today, I would have changed career paths in favor of treatment at my earliest opportunity. Even in a benign form, MS is a chronic progressive disease and IMO one should seriously consider attempting to stall that progression as early as possible.

Good luck,

[pawpaw]

Hoping to avoid long term cognitive decline

I was diagnosed in late 1999 but it took me a few months to "hear" my diagnosis. I am on my third DMD since diagnosis; since last December I have been on Gilenya. Prior to Gilenya, I was off meds for over a year and I was doing great. However, I read the studies and know what the future holds. I am on meds to reduce the long term risk to my brain. I want to keep my cognitive abilities as long as possible, so I am putting up with side effects from the DMD now. MS is destroying out brains and I want to do whatever possible to slow that process.

Pell

[TJ1]

GILENYA side effects?

thank you Celia, AMF, PawPaw/Pell and Dave. I appreciate your insights.

PawPaw/Pell -- would you be kind enough to share what some of the side effects you've experienced from Gilenya are?

More broadly -- to the ActiveMSers community --would be grateful if you'd chime in on two big questions:

#1 -- Anybody here NOT taking a DMD? If so, why not?

(Side effects? Denial? Don't feel like it? -- I'm not being nosey, just new to this & trying to learn.)

#2 -- Anybody here take GILENYA? What's it like? Experience any side effects?

THANKS, in advance.

[cpfefer]

TJ1

This is chad pfefer-a bloke who is undergoing HSCT tx under the MIST protocol as we speak. What exactly do the brain and cervical(thoracic if you have them) show?

Chad

[TJ1]

hi Chad --
I don't deny I probably *should* be on a DMD, I just haven't gone there...

[cpfefer]

TJ1,

I am an Internal Medicine physician with MS. I have done more research on this than most the fellows sub-specializing in MS. I know many of the experts in the field and I woud highly recommend you get a second opinion. If you want I would be more than happy to discuss this with you and give you an objective view on this.

Chad P

[TJ1]

Thanks -- just to be clear, my neurologist strongly recommends I get on a DMD. That option has been offered and re-offered. Absent any loss of function (to date, anyway), I have chosen not to go there, yet. I recognize the folly of the position, but that's where I am at...


Thanks

[cpfefer]

TJ1

Misunderstood your initial post, my bad.
Best of luck to you!

Chad

[TJ1]

Do you take GILENYA?

No worries Chad! Thanks for asking.

OK, over to you GILENYA users... What's it like? What's the story on side effects (in your experience?)

I'm interested in trying this drug -- and, so, am trying to learn (from people who take it) what one can expect....

Again, I'm someone who has "sat out" DMDs so far... But who can argue with taking a pill?

Still, as someone who runs and is fairly active, I'm concerned about side effects -- or at least want to know more...

If you take GILENYA -- would be grateful if you'd share your views on side effects...

[TJ1]

"If you take GILENYA -- would be grateful if you'd share your views on side effects..."

... by "you," I don't mean Chad, as that's not the DMD he's on, I don't think.

So... the question is directed to *other* ActiveMSers and here it is:

If you take GILENYA -- I would be grateful if you'd share your views on side effects...

[Penguin]

Still, as someone who runs and is fairly active, I'm concerned about side effects -- or at least want to know more...

I have no experience of taking the drugs to offer, as my consultant doesn't want me to start them until we have a better idea of the type of MS. But what you said about side effects struck a chord with me - over the last year of tests and waiting, running has been my coping mechanism. Basically I'm telling myself that as long as I can run for miles up the North Wales hills then it can't be that bad....the side effects really worry me, and I can't help thinking that if they are bad enough to interfere with running with my dog, well what quality of life is that?
But the bottom line for me is that I can only fight the secondary symptoms, and only drugs can fight the progression of the disease. So I've decided that when the time comes I'll have to suck it up, and right now, work on being physically in good shape to deal with it.
I'm incredibly relieved about the reprieve right now though, however short lived it is!