NO DMTs?????

[VikingKitty]

long story short...I've been on DMTs for about 2 1/2 years (Copaxone 5 mo - then Tecfidera almost 2 years) -- and I'm tired of the side effect of the Tec and ask my doc if I could cut the dose in 1/2..the answer is no because it won't be a "therapeutic dosage" and I might as well not take anything....

Has anyone given up DMTs altogether?? and just took their chances...I know everyone's course of the disease is different but how about just treating it with steroids if I do have a bad flare??

Any input is appreciated. (btw, I took myself off the Tec for 2 days and feel great! felt like "normal" - so I know it's the side effects making me tired and sick)

[Tawanda]

I have had my diagnosis since 2004 and experienced symptoms ten years before that. I went on a DMT after diagnosis, but always wondered if it was already too late for me and DMDs (before that is what we called them!). A year ago I decided I had it with the "not knowing" if these things were helping and the copays kill me as I am what you'd call "poor", thanks to MS stealing my career!

I went this past year feeling just as good (or just as rotten, depending on how you look at it) when suddenly, I experienced significant hearing loss in my left ear. We made sure it wasn't a tumor, so that leaves MS the responsible party, I assume. I took steroids (did not help) and asked my neuro. if this event would have happened if I had not gone off treatment. He just shrugged and wrote down the names of a couple new meds to research if I felt like going back on something. I have yet to make a move, but I do know ignoring my MS is not going to make my MS ignore me, darn it! Good luck whatever you decide.

[Waydwnsouth1]

I was off DMT's for about 6 months and I paid the price. My MS progressed at a fairly rapid pace. When I saw my new Neuro for the first time she told me that their was a conference of Neurologists, sorry I can't be more specific but my memory fails me, and they determined that no MS'er should ever be off a DMT. She went on to explain why but again my memory fails me.

I am now back on the very first DMT I started on. That's a long story. But I'm but back on a DMT. But to each their own.

[twain]

why?

your decision alone, but every single study has shown that dmt's reduce relapses, reduce lesions, and some reduce disease progression.
use of dmt's, together with exercise, diet and support, can help you live a better, healthier life.
knowing that, why would you want to stop taking a dmt?
if money is an issue, contact the drug company. most will help.

[mjan]

I have had my diagnosis since 2004 and experienced symptoms ten years before that. I went on a DMT after diagnosis, but always wondered if it was already too late for me and DMDs (before that is what we called them!). A year ago I decided I had it with the "not knowing" if these things were helping and the copays kill me as I am what you'd call "poor", thanks to MS stealing my career!

I went this past year feeling just as good (or just as rotten, depending on how you look at it) when suddenly, I experienced significant hearing loss in my left ear. We made sure it wasn't a tumor, so that leaves MS the responsible party, I assume. I took steroids (did not help) and asked my neuro. if this event would have happened if I had not gone off treatment. He just shrugged and wrote down the names of a couple new meds to research if I felt like going back on something. I have yet to make a move, but I do know ignoring my MS is not going to make my MS ignore me, darn it! Good luck whatever you decide.

Hey Tawanda, its Jan! I am so sorry to learn (I almost said hear) of your hearing loss. Any ENT or anyone have an explanation? I didn't think this was part of MS. I too have lost my career due to cognitive issues. So I commiserate with ya! Sending you healing hugs...miss talking with you. YOu can email me if you care to, my email address is in my profile.
Hugs, Jan

[Tawanda]

Hey Tawanda, its Jan! I am so sorry to learn (I almost said hear) of your hearing loss. Any ENT or anyone have an explanation? I didn't think this was part of MS. I too have lost my career due to cognitive issues. So I commiserate with ya! Sending you healing hugs...miss talking with you. YOu can email me if you care to, my email address is in my profile.
Hugs, Jan

((Hi there, Jan)))!

Thanks for asking. The way everything presented, I thought ENT first. The tests done in that office were pointing to an accoustic neuroma so we did an inner ear MRI to rule that out first. My ENT told me he has many MS patients. I always expected vision issues, but the hearing loss was a surprise. I don't know why though...if there's anything I've learned about M.S. is that nothing in our body is off limits. I guess the plaques/lesions (whatever they are calling them these days) are going to fall on our brains as they will. The unpredictability drives me insane. For allI know, today is my best day ever, and if that's the case, !

Take care my friend. The concern you show for others is a huge virtue!

[jreagan70]

I know everyone's course of the disease is different but how about just treating it with steroids if I do have a bad flare?

Hi Kitty:

Trying to control MS by only treating flares with steroids is like closing the barn door after the horse is already gone.

1. Steroids don't do anything to alter the course of the disease. They don't prevent further flares or prevent progression.
2. Steroids don't have any effect on the final outcome of the flare. The result is the same whether treated or not.

Steroids cause their own damage. So for the short-term benefit of perhaps only shortening the length of the flare, you run the risk of developing:

1. Diabetes
2. Glaucoma
3. Osteoporosis
4. Bone death

Steroids aren't "better" vs. DMTs, and their purpose is different. Being diabetic isn't better than not being on a DMT, and diabetes kills far more people than MS does. People die from being bedridden after breaking a hip. If you prefer that, it can happen in as little as a year.

Some people can't take DMTs, so steroids are the only treatments they can tolerate. That's a completely different situation.

The DMTs have their own side effects and can make you feel terrible. I've had to give up many medications due to side effects. But life is full of trade-offs.

If you want to give up DMTs because you value your quality of life now and are willing to trade that for possible/probable progression later, the decision should be fully informed and deliberate, without trying to fudge your way through by looking for an easier way (like steroids after the fact) that doesn't really exist.

As you said, giving up DMTs is taking a chance. For some people, their disease isn't aggressive and they can get away with not taking a DMT. For other people, they find out in a very unpleasant way that they can't get by without one.

[poppydarling]

Has anyone given up DMTs altogether?? and just took their chances...I know everyone's course of the disease is different but how about just treating it with steroids if I do have a bad flare??

Any input is appreciated. (btw, I took myself off the Tec for 2 days and feel great! felt like "normal" - so I know it's the side effects making me tired and sick)

This is such a personal decision. And the party line of "any drug is better than nothing" is an opinion, because even the drug companies themselves don't know if there is a connection between future progression and being on any drug. Nobody can say that you will do "better" by being on one drug or another. No one can say you will do "worse" by not being on a drug.

My doctor is an MS researcher and calls MS drugs "poisons" (which always makes me giggle in a dark sort of way). He said recently "I'm okay with you not being on anything." I was diagnosed in 2000 but have likely had MS for 35+ years. I'm now on large doses of statins and biotin based on recent studies.

So you have to reevaluate at every stage, and keep checking in with your tolerance for risk and quality-of-life, and ask your doctor for his or her opinion. I felt absolutely awful on most of the drugs I have tried, and few seemed to have helped me but we'll never really know, will we? One drug (Tysabri) sent me into a major flare that I have never recovered from. Everyone is different, and nobody can make this decision but you.

[Myoak]

Hi VikingKitty,

You asked for any input so...

My thoughts are if you may forgo DMTs you should be taking a long hard look at LDN. There is plenty of information available both at this site and elsewhere.

Anyone who believes LDN is hype or nonsense is poorly educated about it; including doctors, or anyone else who has not spent the time necessary to learn what it is and how it works.

As with everything, it isn't everybody's cup of tea but there are a great many MSers taking LDN and prescription renewals can say a lot about the value of something to individuals.

Also, if you are near Orlando, FL next Feb 19,20,21 there is going to be an LDN conference which you can Google for more information.

Good luck! Seek and you shall find. Keep looking if the present therapy is not what you want.

[VikingKitty]

Thanks to all who replied..

I contacted my neuro today to get off the Tecfidera and go back on Copaxone...this time at least there is the 40 mg every other day shot available...

[mjan]

This is such a personal decision. And the party line of "any drug is better than nothing" is an opinion, because even the drug companies themselves don't know if there is a connection between future progression and being on any drug. Nobody can say that you will do "better" by being on one drug or another. No one can say you will do "worse" by not being on a drug.

My doctor is an MS researcher and calls MS drugs "poisons" (which always makes me giggle in a dark sort of way). He said recently "I'm okay with you not being on anything." I was diagnosed in 2000 but have likely had MS for 35+ years. I'm now on large doses of statins and biotin based on recent studies.

So you have to reevaluate at every stage, and keep checking in with your tolerance for risk and quality-of-life, and ask your doctor for his or her opinion. I felt absolutely awful on most of the drugs I have tried, and few seemed to have helped me but we'll never really know, will we? One drug (Tysabri) sent me into a major flare that I have never recovered from. Everyone is different, and nobody can make this decision but you.

WOW Poppydarling, your doctor told you MS drugs are poison? Good for him. I am not on DMTs, never have been. But what concerns me that it is not that individualized in MY opinion or how long someone would need to be on a drug. MRIs cannot be the only predictor in MY opinion. If you have no DMTs and have remissions or improve, what do you attribute that to then?

I have a MS doc who agrees that I would not do well on DMTs due to other disorders I have. BUT if I were a young mother, I probably would've considered DMTs but no one knew I had MS back then AND there were no meds to offer come to think of it! LOL

[Tawanda]

Renagade doctors...

WOW Poppydarling, your doctor told you MS drugs are poison? Good for him. I am not on DMTs, never have been. But what concerns me that it is not that individualized in MY opinion or how long someone would need to be on a drug. MRIs cannot be the only predictor in MY opinion. If you have no DMTs and have remissions or improve, what do you attribute that to then?

I have a MS doc who agrees that I would not do well on DMTs due to other disorders I have. BUT if I were a young mother, I probably would've considered DMTs but no one knew I had MS back then AND there were no meds to offer come to think of it! LOL

I was also shocked! Maybe a holistic or a naturopath doctor, but a neurologist? I am not sure if I disagree, actually, but still...wow...pretty radical!

[poppydarling]

If you have no DMTs and have remissions or improve, what do you attribute that to then?

Bingo. Great question. And one I think every researcher in this area is trying to address. Of course, the drug companies would like to attribute any improvements to their drug, but I'm not so sure. There are so many moving parts.

My doctor was raised in India and got his initial medical degree there, so this may play a part in how he approaches things. When I mentioned that I was considering the Ayurvedic diet though, he rolled his eyes which made me laugh. Thought he'd be all over that one.

[Tawanda]

This is such a personal decision. And the party line of "any drug is better than nothing" is an opinion, because even the drug companies themselves don't know if there is a connection between future progression and being on any drug. Nobody can say that you will do "better" by being on one drug or another. No one can say you will do "worse" by not being on a drug.

Yes, poppydarling! This is what I hate about DMTs. My husband takes blood pressure meds, and no more high blood pressure, he takes cholesterol meds, and no more high cholesterol...you get the picture. We do not have the luxury of seeing such black and white results with our DMTs. We take our DMTs with all their lovely side-effects on a wing and a prayer (and here's the diabolical part) and fear that if we stop, we might actually get worse! Most of us are not feeling too hot now, so worse is not an option...!

My MS mother did not have DMTs in the 70s, and she was "Annette Funicello" bad. No doubt Annette Funicello had the best treatment available and had the same exact results as my mother. I have a friend with MS who never went on a DMT route and is raising a family, working full time and recently earned her doctorate degree.

[mjan]

What a discussion! I do not want to discourage ANYONE from listening to their doctor and stop taking DMTs, but I am personally sensitive to most meds due to other conditions. It has literally landed me in the ER. AND my poor husband had been on anti-seizure meds for YEARS 46 years and guess what took him out at age 52? MEDICATION TOXICITY!! don't get me started.

I heard a story from a woman I met at a pharmaceutical MS luncheon. She was in the trial for Tysabri I think. Then a few people died from PML so they stopped the drug immediately at that time. She was devastated as she thought the drug was helping her walk again. She progressed rather quickly and thought this drug helped her walk again.

Turns out she later found out she was on the PLACEBO!!! All her efforts from wheelchair to walking, then running, doing marathons, was after she THOUGHT she was on a DMT. How powerful is the mind!! BUT she always kept exercising even from her wheelchair to keep her muscles from atrophying.

She was walking around the luncheon and I teased her that you could not SEE that anything was wrong or that she had MS. She's on a new drug now so THEY were the ones sponsoring the luncheon. So now they are taking credit for keeping her walking and running.

Get this ladies, and gentlemen, she gets up a 3:30 AM to work out before work!!! She states she never stopped exercising during the decades she's had MS.

What's up with THAT? I do think that sometimes the brain can repair itself, if we reduce inflammation. It shows how POWERFUL EXCERCIZE is to our health and well being.

BTW I asked my lovely MS neuro if she could recommend an anti-inflammation diet. She had NONE to offer!!
What??? How can she not know about how inflammation contributes to MOST diseases???

Jan