Page 1 of 1


Posted: Mon Jun 10, 2019 11:11 am
by friidgehot
Hello everyone my name is Jerry and I have been diagnosed with MS since 2014. I am wondering if there is anybody out there that does not take medication?

Re: Medication

Posted: Mon Jun 10, 2019 3:01 pm
by jimmylegs
hi jerry :) so far, me. dxd early in 06.

Re: Medication

Posted: Tue Jun 11, 2019 4:49 am
by Scott1

In terms of the ones normally thought of, I don't either.

I do take Dantrium for spasticity but I didn't need anything like that from 1994-2015.

From 1996 till about 2012 I did take Avonex and hated every dose. I have been taking an antiviral (valacyclovir) for 20 years but it isn't regarded as an MS medication.

Many people don't take the medications most often recommended. They are all relatively new. Some of us predate them.


Re: Medication

Posted: Tue Jun 11, 2019 7:07 am
by friidgehot
Thank you for your reply

Re: Medication

Posted: Tue Jun 11, 2019 7:30 am
by ElliotB
In spite of the fact that there is no conclusive evidence that DMDs really, really work, I take one. My younger brother, who has had MS for 25+ years (he is now 56) has never taken a DMD and does not do anything special with regard to his health in any way and like the vast majority of those with MS, is doing really well (virtually no disabilities, minimal symptoms, and is loaded with energy).

Re: Medication

Posted: Tue Jun 11, 2019 7:43 am
by jimmylegs
questions re vast majority: where is that number from, how was doing really well assessed and of those doing really well, what are the proportions of those who are or are not using meds.

Re: Medication

Posted: Tue Jun 11, 2019 10:54 am
by ElliotB
There is a lot of statistical data available on the internet and the results are fairly consistent overall. While the data is thought to be accurate for the most part, there is no way of knowing for sure what the true numbers are.

The popular belief is that the majority of those with MS, about 75% or higher have RRMS (the National MS Society claims approximately 85 percent of people receive a diagnosis of RRMS at first). And it is believed that the majority of those with RRMS have milder rather than an aggressive course of the disease. PPMS is diagnosed in about 15 percent of people with MS, (again estimated the National MS Society). And of those with RRMS about half will transition to SPMS within about 10 years. Over a 25 year period that number increases.

BUT typically the number of those with MS with severe cases is in the minority and that the majority of those with MS do reasonably well over the long term whether they take a DMD or not.

What does "doing well" mean? I guess it depends on who you ask.

Re: Medication

Posted: Tue Jun 11, 2019 1:14 pm
by jimmylegs
weird, i'm sure i saw a study today suggesting those being treated do better than those who don't. there's always correlation to consider, of course. i won't bother linking to it, i'm sure you're also capable of finding research.

Re: Medication

Posted: Tue Jun 11, 2019 3:31 pm
by ElliotB
That is what the big pharma wants people to think which is what is to be expected And for each product, it certainly looks that way (that they work as claimed) if you look at their fancy websites and claims made on the trial data on their websites (based on the clinical trials they did). Yet do a little bit of analysis of that data, you can easily see there not a huge difference, typically only 5%-10%, in how patients who take the drug do compared to those in the placebo groups did.

Re: Medication

Posted: Wed Sep 11, 2019 1:21 pm
by robbie
That's great your brother is doing so well after so long EB :) to me just like the diagnosis ms is all about time.

Therapies for MS directed against the immune mediated response
The disease modifying therapies for MS work by various mechanisms, with different therapies having different mechanisms of action. These mechanisms include:
Interfering with the activation of T cells
Turning down the inflammation and immune activity
Blocking the movement of immune system cells
Depleting the numbers of immune system cells
Limiting entry of immune cells into the CNS
While much has been learned about the immune response in MS and the mechanisms that cause inflammation and damage, continued research is underway to better understand the MS disease process including disability progression, and develop treatments that can stop progression, reverse disability and ultimate cure

Re: Medication

Posted: Thu Sep 12, 2019 8:36 am
by Music
Hi Jerry,

Dxed in 1996, took Baclofen for 2 yrs...did nothing but gave me extreme insomnia but otherwise no MS medications. Probably b/c they didn't know what type of MS I had. In a w/c part-time by 1999...full-time by 2003. Stress was my big factor. I was stable till 2018. I really question whether MS drugs help short term or long term. We are all different.

Take care.