Have been off all DMD's for 7 months now

[fishead]

After being treated with Tysabri (post- "failing" 2 other DMD's), for over 30 months it seemed (to ME) that Tysabri was not halting further progression of physical problems with my MS. My lesion development had halted per MRI obtained, prior to stopping Ty. I decided to stop taking my Tysabri, to see what would happen. I know it certainly sounds foolish, but I have had M.S. since Nov 2005, am 47 years old, female & MS has caused me some wicked "LOWS" in all aspects of my life, my "being". I have read many things in the journals of medicine on line, & I am from the medical field and KNOW what consequences I faced.

There is much more to this story, but the BOTTOM LINE is this:

1. I have to get a new/updated MRI to show what is happening with lesions (and WILL post result in this thread).
2. I have more energy
3. I have NO MORE THRUSH and my teeth are much healthier
4. My depression has lessened
5. My family has noticed a significant difference in the way I look. Saying I actually LOOK healthier (even down to the "radiance" of my skin).
6. My cog-fog is not changed. No WORSE, but NO BETTER.
7. My 47 year old "urges" have returned, to what I imagine they SHOULD be.

I am NOT ADVOCATING going off of a DMD, ESPECIALLY if it is working for you. HOWEVER, I have seen many people, here, ask if anyone has ever done this, so I wanted to share what I have experienced and will continue to share what happens (including results of my next MRI).

I will be posting more information regarding other life events that have coincided with this.

My next step, is to discuss Gilynea with my Neuro, at my May 10th appointment.

Be well & be kind to yourselves,
Fishead

[MarkLavelle]

Best of luck, but I hope you'll consider BG-12 when it's approved...

[Cindarelly]

I can't advocate getting off a disease modifying med either.But they do have side effects.

[als5445]

I'm glad to hear that you haven't had any complications from going off your DMDs. Are you taking any supplements or avoiding any certain types of foods?

[fishead]

Mark, what is BG-12? Cindarelly, thank you for your comment.

[fishead]

als5445,
I am not on any different supplements than I had already been taking (Multi vitamins, B-12, D3, Calcium). I am, essentially OFF of smoking cigarettes (I am smoking an electronic one, and finding that I don't feel the need to smoke it often).

[BigA]

I take my shots religiously. Still, I am aware that there are studies which question the effectiveness of DMDs.

It is certain that they lower the amount of exacerations on average. That means that for some people they do a lot and for some, none. That's also why if one doesn't work, you need to try another.

What's not clear, is the effect on disability over time, though it does seem logical that fewer exacerbations means less disability and besides, who wants to have an exacerbation they can avoid? But I understand when someone decides not to take them.

[MarkLavelle]

Mark, what is BG-12?

BG-12 is a new oral DMD that is more effective than the CRABs and safer.

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1679
http://www.medscape.com/viewarticle/751955

[golfwidow]

Dear Fishead,

Thank you for your post ! I have been contemplating going off Betaseron for a while now. Cost being one reason, but also after being on it since 2006 I still have "shot hangovers" and feel pretty crummy day after shot. I cannot manage the cost much longer and still have "things" happening in my body that seem to be exacerbations.
I am hanging here for at least another month, shots just arrived yesterday..........but would like to hear how things are going with you and how your MRI comes out.
To me, it is scary being on the shots and scary to think of not being on them.......but unless I can get more financial help than I am getting I will have to stop.
Course, then I wonder if I will be penaliized by the insurance company for NOT taking a DMD !!!
Best to you,
golfwidow

[BigA]

BG-12 is a new oral DMD that is more effective than the CRABs and safer.

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1679
http://www.medscape.com/viewarticle/751955

There is still a question of what more effective means.

BG-12 was shown to reduce the number of exacerbations dramatically, but could not demonstrate statistical significance in slowing progression.

laquinimod reduced the relapse rates less than any of the crabs, but delayed progression. I'm not sure how much.

I think it's not very clear how well the drugs work and how to evaluate them.

[BigA]

Try to get your head around this study!

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1765

There were two groups of people with Clinicially Isolated Syndrome. That means they only had one lesion or one exacerbation. They tried to see if they could delay transition to clinically definate multiple sclerosis. Sound great?

One group took interferon within 30 days of their exacerbation and one group was delayed 30 months (almost 3 years). There was a 36% reduction in people converting to clinically definate MS. That sounds pretty good.

The group that took the interferon early also had fewer exacerbations. Relapse rates were half as much in the treated group. Even better.

The thing is, that after 10 years, there was no significant delay in progression.

You can check my reading of it. What does it mean? It means we're still in the dark. Should you take meds? I'm taking mine, but it's a personal decison and not crazy either way.

is there anything more we can do? I'm a believer in diet and exercise. I've only had my DX for 2 years, so the jury is out. This is also not the only study out there in the Universe and interferon has been shown to slow progression in other studies.

So keep an open mind. And you can take my advice and follow this program if you like. At least read it: http://www.overcomingmultiplescleros...gram-Overview/

[BigA]

Ha! And when I read down the page, there was a study showing interferon delayed progression.

Interferon at first sign of MS delays progression

So as I say, take a look with an open and questioning mind.

[fishead]

MARK
Thank you for the info, sweety.

[fishead]

Dear Fishead,

Thank you for your post ! I have been contemplating going off Betaseron for a while now...
I am hanging here for at least another month, shots just arrived yesterday....
Best to you,
golfwidow

golfwidow,
Thank you for your post. I still need to call my Neuro and have her order my MRI, but I WILL get that done. I want to have as MUCH info, in front of me, as possible when going in for that appointment.

I still find that my depression is holding steady (without being on an AD). My PAIN has not been controlled well, but it never REALLY was.

I WILL post my MRI results, when available.

As I said, I DO plan on updating this thread. I figure, I really "owe it" to everyone to share.

Namaste,
LaTish

[fishead]

BigA,
thank YOU for YOUR input!!!!!