Just diagnosed, symptom free, still need meds.?

[ADavid]

I was diagnosed with MS a month ago. Took steroids and have been symptom free for over a month (had numb legs and feet). I'm on no medication and feel 100%. I actively exercise, run, etc. with no problems. But my doc. wants to start me on MS meds. now and I'm hesitant. After hearing about all the side effects of the meds. I'm considering foregoing meds. altogether and just see how I do. If I suffer another relapse then I'll reconsider. This advisable?

[jessiesmom]

Whether to Start a DMD

I was diagnosed with RRMS about 7 years ago during my 2nd bout with Optic Neuritis. I had no symptoms before that and have had next to no symptoms of any significance since my diagnosis. I began taking Rebif about 4 months after my diagnosis. The purpose of a DMD as I understand it is to slow the progression of the disease and lengthen the time between exacerbations. It is not to treat the symptoms themselves. Once damage to the myelin sheath on a nerve occurs it cannot be repaired (at this point in time).

I personally am not willing to take a chance and decline to take a DMD. Most neurologists will encourage their patients to take one. If the side effects of the DMD you initially choose are too much then you have the option of changing to a different one. I have been fortunate and had good luck with Rebif and have no real problems so far. You asked the question if not taking a DMD until after you have suffered a relapse/exacerbation/flare is advisable. In my opinion, that would be a great big NO.

[Redwings]

Once damage to the myelin sheath on a nerve occurs it cannot be repaired (at this point in time).

That is not true. Damage can and does heal, and lesions can and do remyelinate. That process corresponds to the remission phase of relapsing-remitting MS. If not, then what would account for the return to function that many people get in the remission phase? What else would account for ADavid being symptom free and feeling 100%?

The ability to remyelinate decreases with time. The inability to remyelinate is believed to be part of the transition into secondary progressive MS.

What is true is that the disease-modifying drugs aren't meds that control symptoms. They're believed to slow the underlying disease process, increase the time between relapses and delay the onset and progression of disability. The DMDs are believed to be the most effective early in the disease when the inflammatory component is the most active. Research has shown that the earlier the meds are begun, the better the outcome in the long term. A couple of studies dispute that, but they've been outnumbered by other studies.

Considering the side effects and the lower rate of effectiveness for the lower-risk first-line drugs, some people choose not to take a DMD early on if they're still feeling well and their MS isn't particularly active. Some people never take them. Some people progress rapidly in spite of how many different drugs they take.

A DMD is, in a way, like an insurance policy. People take them in the hope they'll never have another relapse, or at least that the next one will be a long way off and minor. Hopefully the benefit gained is worth the risk taken.

Taking a DMD is no guarantee that there won't ever be another relapse (and no drug can prevent them). Waiting to start one works out fine if a person doesn't have another significant relapse and the minor ones are far apart. Waiting to start doesn't work out well if a person does have a significant relapse. There isn't a do-over, and the person has to be able to gracefully live with the fact that they could have taken a drug that might have prevented the severity of the relapse but chose not to.

Taking or not taking a DMD is a trade-off between risks and benefits. And the criteria by which those risks are benefits are compared depend on the individual.

ADavid, if you can accept the unknown consequences of not starting a DMD now, then that's the right choice for you.

[BigA]

This is a good post, since it's worth reiterating that

1) DMDs do nothing for symptoms and are not supposed to
2) DMDs may help slow the disease, but we can never know

I like the insurance policy analogy. I haven't had a car accident in over 10 years. I don't regret spending the money. In the same way, you may not regret taking a DMD.

If you do choose one, the one which changes your body the least is Copaxone. A tiny shot and burning and then it's done, whereas an interferon will make you feel bad when you have the shot, for many hours after.

[jessiesmom]

To BigA

. . . "whereas an interferon will make you feel bad when you have the shot, for many hours after."

I must respectfully disagree with the statement you made (copied above) regarding the interferons. I have been taking Rebif (an interferon) since my diagnosis and do not feel bad when I give myself the injection nor do I feel bad for many hours afterward. In fact, I very rarely have injection site reactions, feel pain at the time of injection OR have any side effects after the injection. Granted there are some people that DO have problems but you should not be making those types of generalizations. There are many people who post on MSWorld who take Avonex, Betaseron or Rebif and are happy doing so. There are many threads devoted to this subject.

[BigA]

. . . "whereas an interferon will make you feel bad when you have the shot, for many hours after."

I must respectfully disagree with the statement you made (copied above) regarding the interferons. I have been taking Rebif (an interferon) since my diagnosis and do not feel bad when I give myself the injection nor do I feel bad for many hours afterward. In fact, I very rarely have injection site reactions, feel pain at the time of injection OR have any side effects after the injection. Granted there are some people that DO have problems but you should not be making those types of generalizations. There are many people who post on MSWorld who take Avonex, Betaseron or Rebif and are happy doing so. There are many threads devoted to this subject.

Many threads devoted to how happy people are taking interferon? I've never seen them and I would say from my reading, from all I've heard and from the package insert on my Avonex, that it's more than some who feel flu like symptoms.

If you don't feel bad after a shot of interferon, then you are very lucky indeed. That's great and it's good to point out that not everyone suffers with it.

[gomer]

I also like the insurance analogy, I think its a very good one.

I had MS related problems most of my life. Mostly a mild course. I became disabled in my 30s due to neuro issues, but they were all blamed on my diabetes. I knew something else was wrong, but doctors seemed to have ADD, orwhat I call Arrogant Dismissive Disorder.

BY Jan 2007 I had yet another relapse, fallen and tore my shoulder (needing surgery) and my diabetes was hard to control. I started with a new fam doc who sent me for a MRI for the shoulder and fixed me up with a surgeon for the surgery and a ENT. MY ankles were weak causing internal bleeding, my left leg was very weak and my vestibular was a mess.

Finally a new eye doc in 2009 blasted wide open the MS can-o-worms. MY new fam doc suddenly opened his eyes, called me in for a MS "it fits" talk, and pushed for me to get a formal MS work up.

When I got the formal Dx of long standing RRMS, it was like for the first time I actually KNEW what had been happening all these decades and start FIGHTING back.

BTW my testing included tons of blood work, brain and full spine MRIs, EVP, LP and more, ALL supporting he MS Dx. One of the abnormal factors in my LP was very high MBP, myelin basic protein. That is a very new test considered indicative of your body trying to repair MS myelin damage.

I chose Copaxone, several factors entered in my selection. I am diabetic and been on insulin for nearly half my life, and already doing 5 shots a day, so one more daily shot were not a major factor. The side effects are generally milder so that was another.

So far I am happy with MY choice. While I still get a little progression, it has slowed down in some areas. I am walking better although still limited. MY balance/vestibular is not quite as bad, but I am having PVR/bladder issues. Before MY formal Dx, I had been going down-hill for a few years and afraid I was going to be imprisoned in a chair at anytime. I now use a chair but its part time now.

MY position on meds vs no meds, is I can only wonder if my MS would have been even milder and not needed all the mobility aids I need and use now, at least not yet.

YOU have to do what YOU are comfortable doing. It's your life and you have to deal with the shots/meds and everything that goes with taking them or not taking them.

Gomer Sir Falls-a-lot

[techie]

Take a med!

Like Gomer said it's a good insurance policy.
I took Avonex for 7 years. Before you could titrated it. Not bad at all. Once you get used to it and you tolerate it.
Just hydrate well.
techie

[Angeldifferent]

I was diagnosed with MS a month ago. Took steroids and have been symptom free for over a month (had numb legs and feet). I'm on no medication and feel 100%. I actively exercise, run, etc. with no problems. But my doc. wants to start me on MS meds. now and I'm hesitant. After hearing about all the side effects of the meds. I'm considering foregoing meds. altogether and just see how I do. If I suffer another relapse then I'll reconsider. This advisable?

David, I too was recently dx'd in May, but now i wonder am I in limbo she said POSSIBLE MS not definite. She did want to treat me w/meds to prevent relapses. I haven't had one yet. I think this is a very personal and individual decision. I have opted against them. I do a MS diet, exercise, supplements and meditation. Friend of the family has had MS for over 20 years, not one treatment. And she is moving and doing better than me. I'm following her example. I feel good. I would just say discuss in detail w/your Neuro as I did mine : ) good luck!!!