So are we all continuing with our Interferon Shots?

[BigA]

Heck BigA,
Questioning the ultimate value of taking DMVs has long been a spirited debate among MSers, long before this article came out. My neurologist didn't really have much to say when I brought it up, other than you can't accurately compare health care systems (i.e. ours is better). I guess like apples and oranges?? Anyway, I saw my Mom really do awful with her M.S. and no DMVs and I'm doing a lot better by comparison and that's all I know.

I know, I know. I just expected more considered and lively debate. I hope your doctor's meaning was more intelligent than it sounds. It does seem similar to my doctor's comments that doctors would tend to offer it to those they thought needed it. In a country where drugs are rationed by need (as opposed to income or employment/ social status), then there would be a natural tendency to not offer drugs to people who did not seem to need it.

The study authors made pains to calculate out this selection bias, but he just maintained they could not.

Best thing I ever did was get off meds. Never felt better. Never a regret. If you feel like crap when taking something meant to make you feel better well ...its a no brainer. Listen to your body.

Bob and rdmc are correct. While I understand people feeling better after they stop, no one should misunderstand (and I do see it a lot) that these drugs are not supposed to make you feel better or help any symptoms. In fact, you will feel worse. But in general, the idea is "I feel bad, but at least, or I hope it's slowing down the disease. That's about it.

[Apple-]

I see your point. But for me, I'd rather be playing tennis. Be a mom and look after my 6 year old. Fly to Vegas on the weekends. My life is too short and precious to be completely disabled while on meds like i was for something that may or may not be working. Everyone's quality of life standards are different. For me, going off meds was the best decision of my life.

[Bob698]

But in general, the idea is "I feel bad, but at least, or I hope it's slowing down the disease. That's about it.

Its about a lot more than that.
I lost the the vision in one eye before I started the DMD. I don't want to lose the other one. My mobility was getting worse before I started the DMD. Its become stable and I've been able to keep walking since. My MRIs went from very active for MS to very normal. If I'm a blip in your stats, I'll take it and smile.

If you want to start a thread where everyone agrees with you, write about puppies.

[Thinkimjob]

Take the drugs. If they work, good. If they don't, you're not going to know one way or the other.

We all die anyway, and live long enough, and something unpleasant will get you.

Shame MS gets you a tad earlier than one would like. And it's not fatal, just relentless, like aging itself, just faster.

O death where is thy sting, O grave thy victory?

(Sorry, miserable, but hey ho.)

[rdmc]

Bob and rdmc are correct. While I understand people feeling better after they stop, no one should misunderstand (and I do see it a lot) that these drugs are not supposed to make you feel better or help any symptoms. In fact, you will feel worse. But in general, the idea is "I feel bad, but at least, or I hope it's slowing down the disease. That's about it.

And when saying "feeling bad"...I know DMDs make you feel bad (actually for years my Beta did not make me feel bad)...but in my case, I've taken a vacation from Beta for a couple months, not because the Beta was making me "feel bad" (although it was), not necessarily because of the study, but because there were so many other things going on on different levels with my MS, I needed some relief on some front and quitting the Beta, does help with the morning after aches, pains, and low grade fever which is one less thing to deal with.

Plus I was having frequent infections which is a "possible" side effect from the Beta...so by stopping it, we'll see if that could be addig to the problem of my frequent infections. Years ago, some of you might remember Vic, he had to quit his Tysabri because of the UTI problem with it, so it's not impossible for DMDs to cause side effects that need to be addressed.

BTW, here's a list of possible side effects of Beta...some things you definitely need to make your neuro keep up on if you're on an interferon. I have known MSers on interferons whose dr's never ran blood work...you have to have blood work to check liver function, red and/or white count, etc, that's important.

http://www.betaseron.com/safety/possible-side-effects

[Jules A]

I see your point. But for me, I'd rather be playing tennis. Be a mom and look after my 6 year old. Fly to Vegas on the weekends. My life is too short and precious to be completely disabled while on meds like i was for something that may or may not be working. Everyone's quality of life standards are different. For me, going off meds was the best decision of my life.

I have a huge aversion to "flu-like" anything so I would agree although for me I would try every single available dmd before throwing in the towel. I totally agree with the quality rather than quantity of life line of thinking but I haven't had any issues other than site reactions and lipodystrophy from Copaxone so I'm able to do all the things you listed and while attempting to fight progression of this miserable disease.

I think my concern is that we put out the message that we have to choose between feeling good and attempting to treat this disease and personally in most cases I don't think it is an either or situation.

[Tawanda]

Its OK, I also have strong opinions about the DMV.

Me too, none of them good! Perhaps the latest disappointing report on DMDs and DMVs have something in common after all! A Freudian-slip perhaps?!

[Tawanda]

I have a huge aversion to "flu-like" anything so I would agree although for me I would try every single available dmd before throwing in the towel. I totally agree with the quality rather than quantity of life line of thinking but I haven't had any issues other than site reactions and lipodystrophy from Copaxone so I'm able to do all the things you listed and while attempting to fight progression of this miserable disease.

I think my concern is that we put out the message that we have to choose between feeling good and attempting to treat this disease and personally in most cases I don't think it is an either or situation.

My DMD has never made me feel sick. I have had a constant lowgrade, semi-naucious feeling throughout the course of my disease. It was there before I started my DMDs. To be sure, my doctor suggested I go off my Avonex for awhile and see if I "felt" better. I didn't. I felt the same as I always have. Not the DMDs fault, it's the MS's fault. If it was as simple as getting off my DMDs for a better quality of life, I'd do it. But in my case I feel lousy regardless, so back to the injections and the trial and error approach for trying to improve my symptoms (although I think I've tried every potion out there by now!).

[BigA]

If you want to start a thread where everyone agrees with you, write about puppies.

Actually, I'm not sure how I feel, other than to say that I expected more debate. And in any case, you fit into the category I described. You are taking them and hope they are working... working being defined as having long-term benefits.

Me too.

[SNOOPY]

But your point is the point I've often seen Snoopy make. She has had few relapses, had MS for years, never been on a DMD...and yet if she had been on one, her lack of relapses would have been attributed to the DMD when in fact it was just the natural course of her MS.

P.S. Snoopy...correct me if I'm wrong on your story, but I was pretty sure you were the one who often posted that info on threads like these.

I haven't been following this thread and just happened to glance though and saw your post.

You are correct, rdmc Maybe I told my story a little too often if you have been able to remember it so well

It is possible to have MRI improvements without DMDs.

In 2004 I had numerous (too many to count) c-spine lesions. The c-spine MRI I had this year has shown improvement, I no longer have numerous lesions just 3. The brain MRI at diagnosis (1985) was clear and to this day I only have 4 brain lesions.

My last relapse was 10 years ago and I have remained stable (no progression) in that time. I have a very low EDSS.

My neuro and I have discussed if I have gone from Relapsing/Remitting (inflamation stage) to Secondary Progressive (neurodegenerative stage). The answer is "possibly."

I still do not believe in the MS treatments and have no desire to try them.

Best wishes to all

[rdmc]

You are correct, rdmc Maybe I told my story a little too often if you have been able to remember it so well

No, you didn't tell it too often. I just always thought it was a very good example of how we might be attributing our situation to the DMDs that aren't actually the result of the DMD

[BigA]

Thanks Snoopy. Always great to hear good stories. And it's true, if you did diet or meds or prayer, you'd believe that's what you owe your good fortune to.

In a way, it's like asking people at 100 what their secret to long life is. So what's your secret, lol?

[Bob698]

Actually, I'm not sure how I feel, other than to say that I expected more debate. And in any case, you fit into the category I described. You are taking them and hope they are working... working being defined as having long-term benefits.

Me too.

I take a DMD because it is working.
My background is in science and engineering, I know how to apply information to an event and form a sound judgement.
So does my Neuro. The same can be said of her staff. The same can be said of my GP Dr.
I get treated by the VA, if the results looked questionable then I wouldn't be getting the DMD in the mail each month.

BTW, the "confirm then condemn" tactic isn't debate. It feels like you want to "talk down" to me. You can't. I can act like a dumb guy- but I'm not dumb.

[BigA]

I take a DMD because it is working.
My background is in science and engineering, I know how to apply information to an event and form a sound judgement.
So does my Neuro. The same can be said of her staff. The same can be said of my GP Dr.
I get treated by the VA, if the results looked questionable then I wouldn't be getting the DMD in the mail each month.

BTW, the "confirm then condemn" tactic isn't debate. It feels like you want to "talk down" to me. You can't. I can act like a dumb guy- but I'm not dumb.

I think my post vanished, so if this is a duplicate response, no need to post 2x.

I didn't mean to question your intelligence. I think you misunderstood the debate, at least as I am framing it.

There is a consensus that Interferons reduce lesion burden and reduce the number and intensity of exacerbation in some patients. It is not yet known which patients will benefit before they try it, but tests are being developed that center around genetic markers and IL-17.

So everyone agrees on that. What is not clear, or what has not been proven, is whether these benefits make any difference long-term. It seems logical that fewer lesions now mean less disability 20 years from now, the problem is that this has not been demonstrated with much certainty. It has been shown in smaller and shorter term studies. This was one of the larger, longer studies.

That's why I say we're hoping. You can ask your doctor or look at the various studies and criticism of each one. If your doctor says they're sure, they've seen it - that's heartwarming, but it's still anecdotal.

[Jules A]

It is not yet known which patients will benefit before they try it, but tests are being developed that center around genetic markers and IL-17.

So everyone agrees on that.

Everyone agrees?? Lol, you better duck after you suggest there might be a genetic relationship with MS around these parts.