I often wonder what I would be like with no MS
. When I stopped Tysabri and waited for it to be out of my system I wasn't using anything. As soon as it was completely out of Ny system. I started having flares, so I was on monthly steroids until another med was tried. I'm on Rebirth now but every now ill onlydo 2 injections instead of all 3.

I'm just yo scared to stop all meds. My son is 13 & my daughter is 11. I Made a promise to myself that I will do whatever I need to so that I will still be walking at their weddings.

For me I know I have always felt much better and had more energy when I'd stop taking the Avonex; since I began using it in 2001 or 2003 (I never remember when). I have completely stopped all of it for 9 months, a full year, and 13 months was the longest time I stopped it before I had a very bad MS flare and the neuro conviced me to start some DMD or restart Avonex again.

I did restart Avonex cause I know how terrible it feels but I'm not afraid of it really like I used to be and I pretty much know what to expect now..


Though in October this year2012 I did stop the Avonex again because living up here with the daylight stopping by 4pm and the happy fun that Avonex causes you to feel, I stopped it again.
There is no question that I have MS and the dr. thinks I should be on somethin, but I just can't function very well with a drug like the interfurons and I'm too scared to try whatevea new drugs come out right off.

But I know what you say about feeling better off a med; It really sucks having MS and have tooo many people say that you are crazy for not taking any meds when they are availible! I do not see them halting alll the disease flares anyway.
Best of luck

Oops...yo = to
Rebirth = Rebif

Lots more errors I know too many to fix

I was on avonex for a couple of years and hated it. I am on tysabre now and after 3 months have seen big improvements with no problems. I quit the avonex and didn`t tell my dr until things got bad. It was terrible. I know that I have to have the medicine and am lucky to have found what I think is the right one. If you don't do well without it, try something else. Good luck

Hi
Its a very personal choice as are the consequences,,,, only yours. I know meds makes us feel sick, of course, they are like chemo. But like I always say, I rather waddle twenty years than dance for five. Your body your choice.

Alma

One year ago February I stopped taking Tysabri. Since then, I have not taken any DMD's for my MS. I have not thankfully had a flare, though I can see a degression in my abilities to move an in my cognitive function. I am awaiting the release of BG-12. My doctor wanted me to go back on Avonex, but I refused because it would make me so sick 3 days out of the week. I definately feel better without taking Avonex. Taking any other med just has never come up in our conversations and since I'm doing so well, I haven't pushed for a DMD.

I like Alma's saying, "I rather waddle twenty years than dance for five." I know I am playing russian roulette with my health, and praying that it will continue to do so good until BG-12 is released.

It is a personal decision. I started off on Betaferon & reacted very badly & it didn't control my ms so tried avonex. That was even worse for days after each time. I had an appointment with my neurologist the day after injection & he was horrified at my reaction. Did all the checks & it wasn't help to slow down the disease either.
After much discussion I went off the medications. As soon as there was a trial going on for oral medications I went on it but unfortunately due to other medical conditions had to go off it.
Once Gilenya was approved my neurologist put me on it. It has not stopped the progression but it has stopped the constant flare ups I was getting.

I hope my rambles explain my position & how I have reacted. Read up on the information on line & decide for yourself. Know that if you decide now to have a break & discuss it with your neurologist you can always go back onto a medication later. There are new one's being trialed too always.
Just be at peace with yourself.

I can't take any of the expensive drugs. Not cuz of the money but the side effects made me sicker than the ms. I am on ldn now and find it is the best thing for me. I truly believe that if any med causes such nasty side effects, it is nothing I want to take for a long time. Those are not the answers for me. The dr.s acknowledge that ldn well stops any progression of the disease and is about 30/month. Few to no side effects. I have found that I can;t have dairy with it . Small side effect to deal with so I stick with it. Best wishes to you. You have to make the decision on your own and what youn are willing to live with.

When I was dx, I didn't use a drug for a yr and my MS progressed so I could no longer work. I believe in therapy drugs--they work for me. That and good food.
I saw a lecture about a 14 yr study on people w and w/out interferon. The ones with interferon really had much better results. The proof was the MRIs. I am sold on therpy drugs. I was off for 2 months and had 5 falls one day.

meds, all the way

coming from someone dxed very young, just try something or youll feel guilty when things get worse for not trying everything. if its out of your control, thats different..000000001% of a difference is worth it to me, i get those headaches after rebif, so i know it stinks, dont like shots either, but who does? lol

for you, i say wait and see if your mri changes, and then make a decision, just to be safe

I want to say right up front, that I in no way judge anyone's decision to take or not take meds. Okay, so I was diagnosed in 2000, did not choose to take any meds at that time, only Tegretol due to brain tumor 2 years prior to MS dx. I have to stay on this for long term so I did not want to add another drug (i.e. MS drug). I have had routine MRI's through the years and I have been stable. I had one relapse in 2002 with optic neuritis and was treated with steriods. Currently I have some nerve problems with my back and stomach issues. For me I believe I made the right decision. Everyone must take very careful consideration of all drugs out there. Quality of life is so important and I have managed to work up until this past summer. I wish everyone good health :)

I have had this MS companion for over 25 years! I was on Betaseron twice, Avonex, and Rebif. They all worked to slow the progression so I was able to work until my 50's. Towards the end the Rebif made me so very I'll. My doctor and I together decided no more CRAB drugs or any other MS drugs. I use Ampyra to help with my walking and nothing else. Feel better! Frustrated when I can't walk but better than being sick half of the week.

I agree with the majority of the posts. Speak with your family and Doctor and make a good decision for YOU not them. Take care and good luck!

I'm with Lynne.
After 3.5 years on Tysabri with excellent results my doc strongly suggested going off it because I am JC Virus positive and so comes the associated risk of PML.
I had my last infusion last Nov. and I'm trying to patiently wait for BG-12 oral FDA approval. Biogen makes Tysabri as well and eventually they will (hopefully) offer BG-12 to their suite of med's.
I'm trying to stay positive and not have negative thoughts in my mind. But I am fearful cuz I've never been off a DMD since I was dxd' in 1203 other than the recommended Tysabri drug holiday I went along with for 3 months.
It's true Tysabri stays in your system for 3 months so by the end of February Tysabri should have detoxed out of my system.
And then?
Who knows! The FDA already put an approval delay on the BG-12 release last October. They say March or April 2013 is the likely time frame now.
So all I can do is wait...which is always hard for me.

I have had MS since I was dxed with Rel Rem MS in 1996. I was on Betaseron for 10 years then nothing for 6 years, then had a second attack in 2012.

Since I went 16 years between attacks and I have found a good balance with no attacks for so long in between them and because I did so horribly on the Betaseron when they changed the formulation (from the refridgerated version to the non-ref. version), and because my vit. D level was so deficient when I had my second attack and it is normal now, I am trying it without one of the CRABS.

I use diet, exercise 20 - 30 min every day, and vit D right now. I also rest for a half hour at lunch time every day no matter what. So far, so good. I'll let you know how it goes...

I have to tell you that I live on foods that lessen inflamation (like green veggies and lean meat), and mostly stay away from foods that cause inflamation, (like sugar, white flour, gluten laden foods), kind of like a revised version of the Wahls diet...and it works for me...

If I had a more progressive form of MS, I may change my mind...but because it is Rel. Rem. and I have found the balance that I have and am able to work full time I will stick to what I am doing until it no longer works.

For those waiting for a pill Aubagio is already out. If anyone remember Diane812 she is already taking it and feeling well.