Last reply 2 months ago
Coming off the medication

I have been reading a few articles about coming off medication. I have read an article that there is evidence if there is no obvious progression of MS and one has been on medication for about 12 years, then coming off medication has not made it worse for most of those who have done it. My neurologist says there is a study going on about that where I am located . In general they say there is evidence that if there is no obvious progression of MS Symptom wise or by MRI,and one has been on medication for about 12 years and is over the age of 65, then coming off medication has not made it worse for those who have done it. 13 years ago I had a major setback which led to my diagnosis and since then, no progression. When I was diagnosed there wee no active lesions shown an MRI ( just a bunch of inactive ones) and 13 years later having another MRI with no active lesions, ( unfortunately my neurologist at the time did no MRIs in between 2005 and 2018,)I decided it was time to take a break from medication which I did a couple weeks ago With my MS neurologist’s blessing, and I’m only hoping nothing will change;if it does I will notify my neurologist immediately.
I have a daughter, the only one in my family who was also diagnosed with MS At age 20,three years before I ever found out I had it, and who after 12 years has also come off her medication and she says she feels a lot better than she ever did. She is in her 30s.
I don’t recommend this for everybody and it does come with a risk but at this point of my life Now that I’m 71, it’s a risk I’m going to take.

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2 months ago

@itasara , I can well believe that view and feel that you shouldn’t suffer adversely from stopping medication. As we hit our senior years, we tend to be less affected by stress and that surely helps keep things stable,

However, your daughter does need to ensure that they keep her regularly monitored to quickly identify any adverse changes. Then she can review her need for medication at the earliest opportunity.

2 months ago

@stumbler Thanks for your reply. I also read that about getting older and having less disease. I have been concerned about my daughter being young as she is but supposedly she continues to get MRI exams every six months. She says her MS is mild because she lives in California and is out in the sun a lot it helps her and I believe that. Since I live in the Northeast and hardly see the sun it up I take a lot of vitamin D3. I think considering we are very similar, that we a heredity mild disease connection. We both grew up as babies in upstate New York, same city, and I have read that is one of the influences of MS which could be why nobody else in my family has this diagnosis although there are other influencers as well. My other children have, some of them, other autoimmune issues which I have also read is common in MS.

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