No Medication....

[bethr]

I've been diagnosed with a "mild" form of MS, about 2 years ago. I was put on Copaxone, but developed uncomfortable cardiac symptoms from it, and stopped.

Since stopping, I feel a lot better. The only symptom that seems to have increased a bit, is fatigue, but I am less light headed, less hot flashy, and have less upset stomachs.

My doctor suggested Aubagio, but I've opted to go "sans meds." She said I could try that, and see what happens.

Anybody else trying to go med free???

[Jen1234]

I've been diagnosed with a "mild" form of MS, about 2 years ago. I was put on Copaxone, but developed uncomfortable cardiac symptoms from it, and stopped.

Since stopping, I feel a lot better. The only symptom that seems to have increased a bit, is fatigue, but I am less light headed, less hot flashy, and have less upset stomachs.

My doctor suggested Aubagio, but I've opted to go "sans meds." She said I could try that, and see what happens.

Anybody else trying to go med free???

So so I have had MS for 19 years...told I have benign Ms and tend to have flares every 3-5 years. Over the years I have tried avonex, 1/2 dose Avonnex, Copaxone (allergic to it, I had to take a little cocktail of 9 meds prior to my injection to tolerate), Rebif...I had terrible side effects with all that did not go away! I certainly had a year here and there with no meds and took 5 years off of meds between Copaxone and Rebif. I quit Rebif in 2010 and have been med free since with two flares in that time, the second being last month. I had two rounds of IV steroids...still waiting for the tingling/fuzzy/numbness to go away in face, hands and feet(decreased sensation is normal for my feet).

Soooo, with all that, my doc is suggesting meds again. I struggle with this because truly, in my 19 years I have done Ok and feel much better drug free and believe I have a much better quality of life. I am definitely not heading back to injectables, but the Oral drugs scare me. I typically am that person who gets all the Rare side effects and PML is terrifying! I had been looking at Gilenya and Tecfidera, but have removed Tecfidera and looking at Aubagio. Honestly, I am still not convinced any of them truly do anything. Everyone's MS is different, unpredictable so how can they say for sure it works! I am struggling with the decision of which game of chance I want to play. Right now, I lean towards taking nothing and monitoring things...MRIs, do I have flares more frequently etc. and then decide. I do have disease in my spine, but two lesions are improved and unfortunately the other two, we have no baseline. I am thinking to see what the next MRI says. Maybe I can keep on like this...its just a game of chance...

[dastardly]

Hi guys I have had Ms for over 20 years and for most of that time I never had any treatment for this, I was on a cocktail of hormones and steroids for another problem and the neurologist said these drugs were masking my MS symptoms so I never used and DMD's, now I do I'm on tysabri and having a few problems with my legs and Right hand side, and I wonder if only I had started this treatment earlier would I be in the same boat now. A lot of these DMD's stop you getting worse its a decision only you can make if you are having side effects on some drugs maybe your neurologist can recommend something else good luck with your choice Craig

[SNOOPY]

Hello bethr,

Using or not using the DMDs/DMTs has always been debated with opinions on both sides of this issue.

None of us, on or off DMDs/DMTs have any guarantees.

Some do quite well on the DMDs, some continue to progress and some fall somewhere in between. The same can be said for those who do not use a DMD ---- some do quite well, some continue to progress and some fall somewhere in between. Relapses and progression can happen even on a DMD/DMT.

If you don't use a DMD/DMT and have a relapse or progression would you be okay mentally/emotionally or would you regret your decision? If you would regret not using a DMD/DMT then going off DMDs/DMTs is not the right choice for you.

On the other hand, if you would be okay mentally/emotionally and you feel being off of a DMD/DMT is what you believe is best for you ---- then it is. The majority of Neurologists would tell you being off the DMDs/DMTs is the wrong choice...just sayin'

I have been diagnosed for 31 years with symptoms going back to childhood and I have never used a DMD/DMT. Initially there was no choice as there were no DMDs in 1985. The first DMD (Betaseron) became available to the general MS population in 1993/94, by lottery. I did have a lottery number but as my number came close to coming up I decided to wait. Betaseron was the first medication of it's kind and there were a lot of unknowns. Through the years I have simply chosen not to use the DMDs/DMTs.

I have had 6 exacerbations (relapse, attack, flare-up) in the past 31 years:

- 1985 (severe)
- 1986 (severe)
- 1994 (severe)
- 2001 (mild)
- 2002 (mild)
- 2014 (mild)

If I was on a DMD at the time I had the severe exacerbations it would have been thought the DMD was not working. If I had been on a DMD at the time of the mild exacerbations the DMD would have been considered as "doing it's job." As it is, this is the natural course my MS has taken.

When someone with MS has a MRI and have no new lesions and/or lesions have disappeared or improved the assumption is it's due to the DMD/DMT. However, this is also seen in those who do not use a DMD/DMT.

If you would like more opinions, personal experiences, and the debate that is possible for this topic you might consider asking a Moderator or Administrator to move this Thread to the General Q and A forum.

Best wishes on your decision