To medicate or not?

[Cindybridgeman]

All I can do is share my experience...I was dx in Nov 2013 with minimal symptoms. I decided that I needed to do all I could to prevent further progression and decided on Tecfidera. Taking Tec has essentially been a non-issue for me, with minor flushing issues and no GI issues. Because of this experience, my situation is that I will continue taking Tec as long as there is no issues.

Again, as many of these responses has shown, the decision of whether to take a DMD is a highly personal choice. Mine was easy...but everyone is different and you need to make the choice that is best for you.

Good luck and best wishes!

[Marco]

The Decision to Medicate

This is a short adapted preview of a project I have been working on.

The Decision to Medicate

Since there is no cure for Multiple Sclerosis, the next best thing is being able to reduce the damage the disease does. It was once believed that there was no pain associated with MS. We now know that is not correct, in fact, to many of us that sounds demeaning, if not a little crazy. It was also once believed the brain decay happened only in advanced stages of the disease. We now know that brain decay can start with the onset of the disease and even run independently of the RRMS inflammatory process. And it is not just the brain’s white-matter that is at stake, MS has now been shown to also attack the gray-matter of the brain. In other words, by the time a doctor diagnoses you with multiple sclerosis your brain has already become a battlefield.

Medicating as early as possible gives you the best long-term chance to delay or outright prevent disability. Many experts even recommend starting a disease modifying therapy (DMT) for patients in the Clinically Isolated Syndrome*(CIS) category. Early medication intervention is encouraged prior to full diagnosis to protect the brain from as much damage and decay as possible. The basic theory is a disease modifying therapy DMT will not cause harm that exceeds the potential benefits of the medication. Quite simply, the National Multiple Sclerosis Society suggests the earlier you start a disease modifying therapy the better your prognosis will be.


*Clinically Isolated Syndrome is a pre-MS category where only a single documented MS flare up has occurred. Every RRMS patient could have been diagnosed as a CIS patient prior to their second attack.

[onlyairfare]

I've had MS since 1975, long before DMT's were available, but I have done very well.

I started on Copaxone in 2002 after a bad relapse; it was my first relapse in probably 10 years. I took Copaxone until 2008 when my co-pay went to $800 so I discontinued. $10,000 a year didn't seem worth it.

During 2012 - 2013 I took Gilenya for nearly a year then had to stop due to disabling side effects (nearly passed out at work three times), though I quickly returned to normal once I stopped.

A few months later I started Aubagio. Once again, terrible side effects that interfered with my ability to do my job, so I quit after about 6 weeks.

I'll see my neuro next month and likely go back to Copaxone since I did not have any major problems with that. The shots are a bit of a nuisance, but the pills have not worked well for me.

I have not been in a hurry to go back to the neuro because it has lately felt to me that the treatment is worse than the disease. I'm at almost 40 years of MS and still work full-time, enjoy my family, travel a lot, so MS has had only a modest adverse effect of MS on my life.

I'm one of the "few and far between," still officially "benign," not at all sure DMT's make any difference to my MS journey.

[misslux]

Here is my thoughts on it as someone with PPMS and no DMTs available to me. If there was something available that might help, I'd try it!

[SNOOPY]

Lol you were exactly who I was thinking of.

I somewhat thought so

However, I will disagree with this part in regards to myself:

and if you actually read their stories most do have what I would consider major progression.

Our perspective might very well be different on the term 'major progression' but I have not had major progression, I have had 'some' progression.

Feel free to question it and I will gladly enlighten you ...and will be quite honest about it

Take care, Jules A

[Jules A]

I somewhat thought so

However, I will disagree with this part in regards to myself:



Our perspective might very well be different on the term 'major progression' but I have not had major progression, I have had 'some' progression.

Feel free to question it and I will gladly enlighten you ...and will be quite honest about it

Take care, Jules A

No need, if you are still at a 1 that says it all.

[Marco]

Some people will have major or crippling progression on or off a medication.
Some people will have minor or no progression on or off a medication.

These people are the exception to general rules; 1) that as a MS patient you will have progression over time leading to disability and 2) a medication exists that can help delay that progression and disability 3) the chances are you are not an exception to the general rules.

[onlyairfare]

Marco, I'd add that over 40 years of living, most people with find themselves with more aches & pains, weakness, and some memory and learning problems - with or without medications.

When the"helpful" medication makes it impossible to work or to safely go out of my house, I reach the conclusion that those treatments are worse than the disease. Without those treatments, I can work and I can go out of my house to visit friends or shop or enjoy a movie.

Now I agree with the basic premise that patients with RRMS "should" be treated, and I will go back on the Copaxone if that is what my doc recommends. But if it were to limit my activities more than my MS does, I'd quit.

If I'd had the opportunity to use DMT at the beginning of my MS journey, I'd have likely been very interested. At this point, I'll take them so long as they are affordable and not disabling in themselves.

[Marco]

Without a doubt disease modifying therapies (DMT) can have extreme side effects and long-term safety concerns. They can also put a patient in a disease and activity free state where no new lesion activity or relapses are realized.

To your point, there are individuals who are more sensitive to medications than others. Not being able to tolerate DMTs is better than never trying them. I personally struggled and eventually quit a number of DMTs due to side effects, but finally found a DMT that I could tolerate. I just hope people will base their decision on good science instead of anecdotal information. Brain decay and damage can occur even when a patient has no symptoms. I'll gladly take my medication and improve my long-term chances to retain my current physical and mental capabilities.

[Tawanda]

This is a short adapted preview of a project I have been working on.

The Decision to Medicate

Since there is no cure for Multiple Sclerosis, the next best thing is being able to reduce the damage the disease does. It was once believed that there was no pain associated with MS. We now know that is not correct, in fact, to many of us that sounds demeaning, if not a little crazy. It was also once believed the brain decay happened only in advanced stages of the disease. We now know that brain decay can start with the onset of the disease and even run independently of the RRMS inflammatory process. And it is not just the brain’s white-matter that is at stake, MS has now been shown to also attack the gray-matter of the brain. In other words, by the time a doctor diagnoses you with multiple sclerosis your brain has already become a battlefield.

Medicating as early as possible gives you the best long-term chance to delay or outright prevent disability. Many experts even recommend starting a disease modifying therapy (DMT) for patients in the Clinically Isolated Syndrome*(CIS) category. Early medication intervention is encouraged prior to full diagnosis to protect the brain from as much damage and decay as possible. The basic theory is a disease modifying therapy DMT will not cause harm that exceeds the potential benefits of the medication. Quite simply, the National Multiple Sclerosis Society suggests the earlier you start a disease modifying therapy the better your prognosis will be.


*Clinically Isolated Syndrome is a pre-MS category where only a single documented MS flare up has occurred. Every RRMS patient could have been diagnosed as a CIS patient prior to their second attack.

Brain decay?! Eeeeeew !

[Tawanda]

Here is my thoughts on it as someone with PPMS and no DMTs available to me. If there was something available that might help, I'd try it!

After many conversations with my neuro., I get the feeling he is willing to put any of his patients on a DMT. PPMS is un-study-able, so nobody has any way of knowing FOR SURE if a DMT can't still be helpful. I am thinking that the mechanics of M.S. ultimately stay the same no matter what label they put on you...attack, attack, attack! I'm not sure if any MSer should automatically forgo a DMT without getting a few opinions.

Personally, I am sick to death of these meds and exploring more and more options outside of my "Lazy Susan" of a pharmacy above my microwave.

It is really a personal decision. I used to think that anyone with MS foregoing a DMT was suicidal. 10 years later, I no longer feel that way.

Hmmm...it's complicated. So much grey area. No one appears to be giving you a straight yes or no on this one, are they?

[misslux]

The thing is that most DMTs target reducing flares. PPMS doesn't have flares, just progression.

[Marco]

The thing is that most DMTs target reducing flares. PPMS doesn't have flares, just progression.

The medications work better during the inflammation phase that is why EARLY treatment is so important. If you wait until you have pronounced symptoms you've missed the best opportunity to reduce or delay disability. Brains shrink and decay and MS speeds up the process. For the average RRMS patient they have roughly 10 years before starting to get into SPMS. These medications can delay that process -- meaning you KEEP more of your brain, your physical and mental capabilities for a longer period of time.

PPMS patients are in a completely different situation, but they are the minority of the patients. Again, for the average patient being on a DMT will generally be beneficial and worth tolerating.

[Tawanda]

The thing is that most DMTs target reducing flares. PPMS doesn't have flares, just progression.

Right! That's why it is, as I call it, "un-study-able".

DMTs may still slow the progression, but if, and by how much, could never be boiled down into data-based reports for our insurance companies to digest and process. There are no relapses and remissions to tally up. That definitely seems to be the number one factor that makes studying PPMS nearly impossible.

I think this is why my doctor never discusses "types" of MS with me. Reporting that I am anything other than RRMS to my insurance company would guarantee them pulling the plug on a drug that could very well be slowing down progression. Nobody can say for a fact that it doesn't.

It is my basic understanding that DMDs provide your immune system with something else to chew on other than your myelin sheaths (acting as decoys or something). So to further my "Pac Man" analogy, wouldn't that be a good thing for anyone whose immune system is attacking itself?

I certainly don't have the answers. I am merely a patient who likes to theorize as a hobby!

[BigA]

I used to be on the fence, but now I lean in the direction of taking the meds, especially at the beginning.

This is a study where they went back and found the participants from the original interferon study. All they measured was who was still alive and who wasn't.

There were 3 groups. High dose, Low dose and No dose (placebo). they stayed that way for 2 years and then the study was unblended and everyone was given meds. 21 years later, it still had such an effect, that there were significantly higher number of people who were dead in the placebo group - just for having missed those first 2 years.

http://www.ncbi.nlm.nih.gov/pubmed/23204140

Start taking them and see if you leg falls off. You can always quit, but not have these first few years to possibly set the tone.