[SallyC]

Read em and weep or get P*****!!

Ashton Embry - New Studies Show the MS Drugs Don’t Slow Progression:
http://tinyurl.com/25jrtmk

Dr. Alastair Compston and the Drug Dealers:
http://www.facebook.com/note.php?note_id=426801499918

The Independant - MS drug trial 'a fiasco'
http://www.independent.co.uk/life-style/health-and-families/health-news/ms-drug-trial-a-fiasco-ndash-and-nhs-paid-for-it-1991104.html

UK scheme for MS drugs "a costly failure" - experts:
http://www.reuters.com/article/idUSLDE6520H520100603

BMJ - Multiple sclerosis risk sharing scheme: a costly failure:
http://www.bmj.com/cgi/content/full/340/jun03_1/c1672

NHS 'has wasted millions on MS drugs which did nothing to help patients'
http://www.telegraph.co.uk/health/healthnews/7800543/NHS-has-wasted-millions-on-MS-drugs-which-did-nothing-to-help-patients.html

Interferons May NOT Be Good for Some People with MS:
http://ms.about.com/b/2010/03/30/interferons-not-good-for-some-people-with-ms.htm

[Dejibo]

I found that the interferons made my liver very unhappy, and copaxone was a miserable drug for me to inject everyday. The side effects were worse than the flairs! After extensive research, and prayerful consideration I have decided to ride bareback thru the world of MS until a better option comes along.

[Kitty]

For the few that are actually helped by the DMDs that are available now I'm happy. But the odds of the meds working to slow progression or lessen the incidence of exacerbations is so bad (what is it.....like 30%??) that they give little hope to those who are brave enough to give them a try. Couple that with the possible side effects and long term damage to body organs and for me it's just not worth the gamble.

I tried them. I tried the Interferons and Copaxone. Both had such terrible side effects it just wasn't worth the struggle. Then.......add in the ridiculous cost of these "meds" and unless you have really good insurance they just aren't an option anyway.

I seriously have to question the "method behind the madness" some of these big pharma companies incorporate. My trust in modern medicine has really been tested over the past several years. I have done my research and found the best course of action for my own particular situation. And it does not include any of the approved DMD's on the market right now. I feel 98% better than I did when I was trying to use the suggested medicine from my Neurologist. Go figure. Do they really want me to feel better? Or are they protecting their own pockets and bottom line? I have to question that.

[Erin524]

I never thought the C was doing anything to help the MS when I was taking it. It sure was giving me lots of icky side effects. (yeast infections! eeeeeekk!!)

It took about 10 months for that particular side effect and a few others to finally clear up and go away.

I've had four boxes of C sitting in my mini-fridge for a year now, because I didnt want to throw it out just in case I started taking it again. Next time my pharmacy (or any local pharmacy) has a free-disposal-of-old-meds day, I'll be taking those four boxes in so that I dont have to worry that they'll accidentally leak into the environment.

I no longer care if they get warm or frozen sitting in that fridge.

I'd rather get a Rx for LDN (seriously! someone give me a Rx for LDN!!!) or have someone stick balloons into my jugular vein. I wont be surprised if it turns out that MS is caused by vascular problems. (there's probably a neurological component too)

[Grammie 2 3]

Oh my... and now they are telling people to get on them ASAP
I wasn't on meds for 13 1/2 years; had little to no sx. I then started having stiffness in my knee, my neuro told me ms. A year or so later started Copaxone-didn't seem to do much for the 2 1/2 years I was on it
Very, very frustrating !
Linda

[karousel]

My experience has been the opposite. I had some side effects from Betaseron that lasted 3 months (chills). No side effects from Avonex. I have not had a flare since I started the interferons 15 years ago (knocking on wood right now). My neuro told me I am stable - which may be very different than saying the meds are actually doing their job. So maybe I'm just very, very lucky. (Plus my co-pay is only $20 and that makes a difference also.)

I don't think all drugs work for everyone or they may only work for a few. Since everyone's MS is different how the drugs work for each individual will be different as well. So they need to stop working on meds and get working on a cure or finding all of us some answers!!

[wkikta]

Approaching 10 years on Avonex. No exacerbations! It works very well for me. Looking back I was having an exacerbation every 3 - 4 years before.

[Dejibo]

I have a friend who has been on Betaseron for 10 years, and NO exacerbations! not one! she has been extremely stable since starting it. She was incredibly ill before she started.

Me? I struggled from the first injection. I think it depends on the person.

now I have 3 boxes of fresh Copaxone sitting in my fridge. I wish I knew someone to send them to. They cost me next to nothing, and I have been ever so protective to keep them cool and protected from light since arrival. Anyone wants them can PM me.

bah, im tired of not feeling well in order to prevent myself from not feeling well. what was the point of that?

[Koala77]

Originally Posted by wkikta

Approaching 10 years on Avonex. No exacerbations! It works very well for me. Looking back I was having an exacerbation every 3 - 4 years before.

If you have RRMS, then you have probably passed through the inflammatory phase, which my neuro told me is the natural progression of the disease.

I was diagnosed more than 34 years ago, and initially I was having at least two acute exacerbations every year. Gradually that settled down to annual/biannual, then 3-5 yearly.

Now I get mostly pseudo flairs and I believe that's because of the length of time I've been diagnosed.

In nearly 35 years, I've had flairs that have affected almost every part of my body, so any exacerbation now is classed as a pseudo-exacerbation and not a true flair, unless of course it affects some part of me that's never been affected before (and there aren't many of those places left now).

I personally don't believe DMDs work unless you count the placebo affect, and studies have shown placebos to be extremely effective in the treatment of many medical conditions, including MS. You only have to look at the control group in the trial of any medication to substantiate that.

My MRIs have changed over the years in the same ways as others here who medicate have described. Some lesions have grown and some have shrunk. Some are new, some old ones less visible, and I don't take DMDs. I tried the Interferons and I was allergic to them. 20 years later I tried Copaxone and I was allergic to that, so for over 34 years I've plodded along without partaking of any of the MS drugs.

When symptoms get the most of me I will take cortisone, but only if I have to. Most of the time I sit back and wait for the symptoms to settle on their own ... and they always do.

So, for those who believe their medications are helping, I truly am happy for you. I just happen to believe that DMDs for MS don't work, and that any apparent improvement for those using them is simply the natural progression of the disease.

[SallyC]

Originally Posted by Koala77

So, for those who believe their medications are helping, I truly am happy for you. I just happen to believe that DMDs for MS don't work, and that any apparent improvement for those using them is simply the natural progression of the disease.

This is what I believe.....especially since I went 17 years, after DX, without an exacerbation and stayed stable for all that time, with NO MEDS at all.