confused about dmds

[jjs]

First ... i avoid medication, including OTC meds, as much as possible. So i am already starting off skeptical about dmds. Even still, I am doing my best to keep an open mind. I have tried to learn about them but it's all confusing to me. Questions come like how do they know it's actually helping? How do they know their quality of life is better with a dmd than without? Is it really slowing down progression? Maybe that person would have been the same without it? Or better? Are the side effects worth it? And so on.

Can someone please explain dmds to me in very simple terms? What are they supposed to do? How do we know they are working now and long term and not doing more harm than good? Why are there so many of them? And anything else you think would help educate me.

I thank you so much for your time.

[Marco]

Hi JJS! I completely understand where you are coming from and your medication concerns.

Questions come like how do they know it's actually helping?
- They don't know. Drug trials comparing a drug versus a placebo or another drug generates a set of statistics. They then send the information to the FDA/EU or other governing body for approval. If approved, they will then market the drugs using the statistics developed during the trial.

- From the time you start taking a MS medication the drug will probably get credit for you "not having flares" or "having kinder and gentler flares."

- There is basically no protocol to remove you from a drug once you start unless you have severe side effects or it's clear the drug is not working. Not working means you are having chronic flares or substantial new lesion activity.

How do they know their quality of life is better with a dmd than without?
Your qualify of life is generally NOT better with a dmd. There are copays, side effects, injection holes or what have you. Some people are reassured by taking the medication they are doing what they can. I believe few people actually feel physically better on dmds, but the goal is to retain your physical, mental and emotional condition. Your disability score (EDSS) does not increase, you can still walk, talk, feed yourself, etc.

Is it really slowing down progression? Maybe that person would have been the same without it? Or better?

- The National Multiple Sclerosis Society believes the medications do work (as does the FDA and, of course, the drug companies). Like all medications, each patient will respond differently to it and have a different benefit.

- I've never seen any real evidence that taking a dmd would increase progression, but I guess it's potentially possible.

Are the side effects worth it? And so on.

I tend to be sensitive to medications, and on the first 3 dmds the side effects were not worth it.On my current medication the side effects are definitely worth it.

Can someone please explain dmds to me in very simple terms? What are they supposed to do?
The drugs are intended to slow the progression of the disease, reduce the number and intensity of flare ups, reduce lesion activity and hopefully reduce disability as well.

Essentially, the ms medications are a like a car brake for the disease. It would be nice if they completely stopped the disease, but we settle for slowing it down.

How do we know they are working now and long term and not doing more harm than good?
Some of the medications have been out for a while so we have a better understanding of the long term effects. New drugs like Tecfidera, Aubagio and Gilenya we are learning more every day, but do not have a clear long term picture as of yet.

Why are there so many of them?
Researching ms leads scientist down different paths and medications are developed when the research indicates a possible medication solution. There is also money at stake and different pharma companies are competing with one another.


A great many of us struggle with the decision to medicate or not medicate. Some decide it's not worth it, others swear by it. Some go for holistic cures, special diets or one of the new "silver bullets" that arrive every 18.3029 months claiming to be the cure.

After researching all my options, I made the best decision I could and moved forward with that decision. I tend to think my ms medication is improving my odds to successfully fight the disease. There is absolutely no guarantee that it is working for me or I would not do better on another drug or none at all.

My goal is to live as healthy as I can for as long as I can. To be capable of enjoying life to the full and fighting this disease with all my resources. I also look both ways before crossing a busy intersection, but that's just me.

[ru4cats]

Well said, Marco! At my last appointment, my neurologist did say that it is worth it to stay on your DMD of choice, if you finding success with it, even if you're SPMS like I am now.

[Special Kay]

Great summary by Marco!

I also want to add that you need to understand your own personal comfort with risk (long and short term), which will play a role in whether you decide to take a DMD or not.

I take a DMD because I am still (7 years, knock wood) very well, have very few symptoms, and no apparent disease activity. My primary goal is to stay this way for the rest of my life. My secondary goal is to possibly see some of the symptoms I do have abate.

Those goals may not be realistic (especially #2), but I have a fighting chance of achieving them by taking DMDs along with lifestyle modifications.

[misslux]

Some really good info above!

Also wanted to add that DMDs are really only for RRMS. There isn't really anything available for PPMS (yet).

[Cat Mom]

Your qualify of life is generally NOT better with a DMD..

I must be the exception so I whole-heartedly disagree with this.

Your question re how do we know it's working... my own personal experience says we really don't know. Nobody could tell how many/severity, etc. of flares we would have had if we weren't on that DMD. Just like lots of other chronic illnesses and their respective treatments.

I guess my best rationale is that I may not know if it's working but I sure will know if it's not.

Good luck making your choice, please let us know how it's going.

Jen

[jjs]

Marco - thank you for the detailed response, that really helped me a lot. Based on yours and the other responses [thank you to the rest of you too!] it seems to me that it's more a matter of personal choice or preference than any thing else. A matter of what WE PERSONALLY are comfortable with and what we are not comfortable with. No one can make that determination for me and I cannot make it for anyone else.

I am having a very hard time with this [MS] and cannot help but wonder where I will be in a few years if I keep on the natural route or if I try some kind of dmd. (or both??) It's only been about 2 1/2 years since my first major flare up but once I learned what MS was all about it was easy for me to look back and see evidence of it years earlier. So, maybe it was already around for 10 or so years before getting really bad?? But that does not seem to fit either because I still do not have enough obvious scars on my MRIs to meet the diagnosis criteria. I have struggled almost every day for the last 2 1/2 years just to do even basic things and I used to be so strong and very capable. How do I not have definite scars?!?! That just confuses me. I keep wondering if maybe there is just something else wrong, but even all the doctors agree ... everything screams MS (or 'textbook case' as they say). They say the specific scars will show up sooner or later, it's just a matter of time. My next MRIs are scheduled for the beginning of december - a year after the last ones. The last ones showed some scars but I guess it could have been just from living a rough life for the first 25 or so years of my life. (drugs, alcohol, etc.)

Anyway, thank you all once again for responding. I appreciate it a lot and look forward to more responses if someone else wants to chime in.

[dyin_myelin]

Why are there so many of them?
Researching ms leads scientist down different paths and medications are developed when the research indicates a possible medication solution. There is also money at stake and different pharma companies are competing with one another.

Different meds have different profiles and modes of delivery. If you absolutely can't stand the thought of injecting yourself, there are oral medications like Tecfidera. If you have a high risk tolerance like I do and find the idea of your brain atrophying yearly unacceptable, Tysabri is worth looking into, even with its side effect, death. My friend is of childbearing age and likes the safety of Copaxone, even though its efficacy is at 30%. MS is a variable disease, but controlled studies account for this. Researchers agree we are reaching an "operating ceiling" with immunosuppressants and modulators, and newer therapies should focus on myelin regeneration and prevention of neurodegeneration (Grewal, 2010). In the future, genetic profiling may allow neurologists to preemptively tell you what DMD will work best for you.

The modest gains of most DMDs are statistically significant over placebo. I can share studies if you want that indicate diet does not affect MS, although eating well is good for overall health (I will enjoy that occasional slice of pizza). The research also indicates that the interferons can help to prevent MS from fully declaring itself if you catch it as a CIS (see the BENEFIT study with Betaseron). As the MS Society points out, DMDs are not designed to make you feel better--you may feel worse. They are only intended to reduce relapse rate and slow the onset of disability.

A woman on the bus with a cane smiled at me reading a MS book and I knew she had MS because nobody in Philadelphia ever smiles at anyone else. She then asked if the book was any good but said she didn't want to read it unless it was respectful towards not treating it. I wish I had made a case for the DMDs before I got off, but you don't want to overstep your bounds.