Has anyone tried to go off DMD ?

[EH1609]

I was diagnosed with MS 2 and half years ago. I have been on Gilenya ( 1 yr) and tysabri ( 1 year). I am thinking of going off treatment and go with diet and supplement. Has anyone tried going of disease modifying drug (DMD) ?

[Mamabug]

Not intentionally, really. But, in 2008, I switched from Betaseron to Copaxone because my MS Specialist did not believe Betaseron was very effective for me. I was having one or two flares every year. There was about a two-month gap before I was able to begin Copaxone, and, because she did not think B was very effective anyways, she said it was OK to just go off during the waiting time.

I ended up having a flare several weeks after starting C. She said that C had not yet had time to become effective and attributed the flare to being on no DMD's for that period of time.

[Marco]

AAN Presentation about stopping MS medication

I would suggest talking to your neurologist about your desire to quit therapy. It's a highly personal decision and I know people that have quit successfully and others that have regretted their decision.
There are no Magic 8-balls when it comes to what your MS activity level will be on or off a medication.

I want to provide the below article as reading material to consider.

What happens when multiple sclerosis patients stop taking their medication?
http://www.sciencedaily.com/releases...0421111611.htm

[EH1609]

Thanks Marco for the article. Very interesting ....I still have to think about it for sometime before even discussing it with my neurologist

[miwealia]

Off Gilenya and no bad effects...so far!

I was on Gilenya from the day I was diagnosed in May 2013 until August 2014. The reason I went off was because I was experiencing extreme headaches, and according to the literature that I was given about Gilenya, headaches were listed as one of the likely side effects. My headaches were so bad and constant that I was barely functional. So my neurologist agreed for me to stop Gilenya to see if my headaches would decrease.

The severity of my headaches didn't change at all, and since I couldn't go to a hospital that knew how to administer Gilenya to restart (I was working in China), I just stayed off.

Then when I returned to the U.S. in Feb. 2015 my new neurologist said I didn't need to go back on, since I was doing so well following a very strict diet and exercise plan. Hopefully that will continue!

[msgijo]

I was on Gilenya from the day I was diagnosed in May 2013 until August 2014. The reason I went off was because I was experiencing extreme headaches, and according to the literature that I was given about Gilenya, headaches were listed as one of the likely side effects. My headaches were so bad and constant that I was barely functional. So my neurologist agreed for me to stop Gilenya to see if my headaches would decrease.

The severity of my headaches didn't change at all, and since I couldn't go to a hospital that knew how to administer Gilenya to restart (I was working in China), I just stayed off.

It has been over a year since you stopped Gilenya - have the headaches stopped yet? The severity decreased any?

That is one of the SE's that I am having problems with. Started as not so bad and only occasional, then more frequent, then worse severity. Now they are daily and severe!
Please tell me that there is hope that if I go off Gilenya that the headaches will stop.

[miwealia]

It has been over a year since you stopped Gilenya - have the headaches stopped yet? The severity decreased any?

That is one of the SE's that I am having problems with. Started as not so bad and only occasional, then more frequent, then worse severity. Now they are daily and severe!
Please tell me that there is hope that if I go off Gilenya that the headaches will stop.

I know that each person who has MS has different symptoms, and so the same med might not work the same for two different people.

So I can't directly answer your question. Stopping Gilenya had no effect whatsoever on the severity of my headaches. They continued the same as before.

I think the things that helped to reduce my headaches (as well as just about every MS symptom!) were, in the order of importance, at least from my perspective:

1. Moving from China back to the U.S. Not only did that take me out of a crazy loud environment and place me in a relatively peaceful one, but it also removed me from the over-the-top pollution in China.

2. Reducing the level of stress in my life. I think that a good percentage of my headaches were due to the high amount of stress that I was dealing with, and it tended to settle in my neck and shoulder muscles, causing trigger points that added to the severity of my headaches. Massage and acupuncture helped, but I couldn't do it every day.

3. Gabapentin. After I returned to the U.S. and saw a new neurologist, she put me on Gabapentin specifically to address the headaches. Right after we returned, they reduced from an average level of 8 in China (in other words, barely functional because of the extreme pain) to around 5-6, which was much better than 8 but still pretty painful.

After I began taking Gabapentin, the level went down to 1.5-2! And it's stayed there pretty consistently for the past six months or so. Yes, I still have the headache all the time, and there are still days when they increase to level 4 or 5, but those days are thankfully few and far between.

So stopping Gilenya might not be the answer for your headache problem. It certainly wasn't my answer! But like I said at the beginning, each person is different and might respond to a med different than someone else. But I DO know that Gabapentin has helped tremendously!

[KitOP]

It has been over a year since you stopped Gilenya - have the headaches stopped yet? The severity decreased any?

That is one of the SE's that I am having problems with. Started as not so bad and only occasional, then more frequent, then worse severity. Now they are daily and severe!
Please tell me that there is hope that if I go off Gilenya that the headaches will stop.

I was actually in the clinical trial for Gilenya. It wasn't until we went into the Phase II portion of the study that I developed horrible, painful migraines. I had never had a migraine in my life. Of course I reported this to the clinical trial team. They were very patient with me, trying different things to see if it was just coincidental or actually the Gilenya. The headaches were ridiculous! The last one that I had put me in bed for 3 days. I just can't do that!

They finally took me off for a 3 week "drug holiday". The headaches stopped. So they tried another 4 week extended drug holiday, no headaches. So they took me off the med, took me out of the trial and here I am. I've never had another migraine since.

But that is me and my story, but I sure think that you should discuss this with your neuro and discuss options. You certainly have empathy from me on that one.

Good luck!

P.S. As far as the original post goes, I am not on any DMD right now. I'm one of "those" MS patients who just can't take these drugs. Side effects and allergies all the way around. So I'm done, I'm good with it, Dr is good with it. (Avonex, Copaxone, Rebif, Gilenya, Tysabri) No more for me, I seem to be holding my own.

[lukeduke]

I want to go off the DMDs. I was using Rebif for about five years. I developed antibodies to the Rebif so we switched to Tysabri. Tysabri scares the ever loving dog out of me. I have done well on it, but I still do not like the needles any more. I gave myself three shots a week for five years and I do not want to do that again. I am looking into trying out the Swank Diet. I will look at some of the other MS Diets before I start it. I just began today to incorporate some of Swank's ideas in my diet. Instead of getting my omelet today I opted for Non-Fat Greek Yogurt. I know if you knew me that would sound weird. I am the one who says that the fat is where the flavor is and there are three food groups. Cow, Not-Cow, and Cheesecake. If I do try to get off the T
Tysabri my family will probably kill me.

[alk]

I have used the Swank Diet for a year while trying to find a DMD that I can take. I failed two drugs in the past year but my yearly MRI was stable. I'm not sure if its really slowing progression since I was only diagnosed a year ago last August. I will say that when I'm trying to follow it more strictly I feel better. My mind is is clearer, I have more energy, and I don't feel as weak on my right side.

[poppydarling]

I was diagnosed with MS 2 and half years ago. I have been on Gilenya ( 1 yr) and tysabri ( 1 year). I am thinking of going off treatment and go with diet and supplement. Has anyone tried going of disease modifying drug (DMD) ?

I think the advice of reading up and checking with your neurologist before you make the decision is good.

I'm just like kitOP — went through a string of medications that I couldn't tolerate for one reason or another. So now I'm on statins and seem to be much more stable and strong. My doc is a MS researcher and there was a study that was published in The Lancet about the use of statins (specifically Lipitor) in SPMS and so far it seems to be doing well for me. I'm about to start mega-dose niacin as well. I'm trying to follow the Wahl Protocol as much as possible, too.

I feel so much better off the drugs, but obviously my disease is slowly progressing along with everyone else's

[Beach Betty]

Going off Meds

You didn't say if you are dx as R&R or secondary progressive or progressive? I was first dx as R&R and for 5 yrs faithfully administered beta 1A shot weekly. Pretty much helped as I continued working, but still had occasional flare up and repeated optic neuritis. However, in 5th year, I started having problems with med directly after administering shot and for several days thereafter, could not get out of bed and felt very sick. The neurologist then told me I had gone on to secondary progressive MS and many times meds only hurt rather than helped so I went off meds. Have been off for 4 years now (and retired on disability). Still have problem with optic neuritis, real bummer. But other symptoms such as numbness, tingling, electric strikes through my limbs, walking difficulty (I walk with a cane, am determined not to be wheelchair bound, although I use one for long distances) and fatigue still are with me. They were there with meds too. So basically, I am at ease without meds knowing that troubles I had with meds are much the same without, so why bother?!

[randrk]

Hi Betty

You didn't say if you are dx as R&R or secondary progressive or progressive? I was first dx as R&R and for 5 yrs faithfully administered beta 1A shot weekly. Pretty much helped as I continued working, but still had occasional flare up and repeated optic neuritis. However, in 5th year, I started having problems with med directly after administering shot and for several days thereafter, could not get out of bed and felt very sick. The neurologist then told me I had gone on to secondary progressive MS and many times meds only hurt rather than helped so I went off meds. Have been off for 4 years now (and retired on disability). Still have problem with optic neuritis, real bummer. But other symptoms such as numbness, tingling, electric strikes through my limbs, walking difficulty (I walk with a cane, am determined not to be wheelchair bound, although I use one for long distances) and fatigue still are with me. They were there with meds too. So basically, I am at ease without meds knowing that troubles I had with meds are much the same without, so why bother?!

Hi. My name is Rand. I was officially diagnosed with PPMS in 2012 A month ago I was so weak and fatigued I was sure I would be in a wheelchair in a matter of weeks. While surfing the net, without hope, I found Naltrexone, researched it, and have been taking it since Aug 31.

After three weeks, and a beer, I walked a block, bought an ice cream and sat for 15 min, then walked four blocks home, with a one min rest after three blocks. And the next day I wasn’t sore or stiff from the exercise.

Since then I still get stiff muscles, but they’re stronger. I have been having trouble sleeping, but that may be because of my environment (two teenage sons). I can now work physically for a couple of hours a day, now and again, which I haven’t done for a couple of months.

The regime I’m following now includes;
Modafinel – Two in the morning (down from three, started six months ago)
MM and ibuprofen for pain
Naltrexone – 2 ml before bed

I also use an electrical muscle stimulator (EMS), about the size of a transistor radio, most days, to exercise different muscles. I began physiotherapy three years ago, once every two weeks, last year, once a week, and now twice a week for massage and adjustments.

Anecdotal evidence suggests it works for some people, not for others, has minor side effects, and progression could stop for some people. If that happens and this is as good as it gets, I’m fine with that. But if not, I’m better now than I was and I’ll enjoy what I can, when I can.

If you decide to try ldn, research, talk to doc, and make up your own mind. If you want more info from me, my email is on my profile.

**edited by moderator in compliance with guidelines 10 & 14**

[Diamond57]

Hi All! It's been a little over a year that I've been diagnosed but have had it for years along with other autoimmune diseases, surgeries other health issues. It's been a tough year but things are looking up. I was on Rebif from the beginning and I already was diagnosed at 13 at Mayo clinic with severe chronic depression.

Too make a long story short and it's hard for me to admit this but I got so so bad and ended up in a psych. ward for alot of the summer. The Dr. NEW I had chronic depression. It was awful. I couldn't do anything for myself. Any hooooooo, I've been off my meds since end of April. I'm doing better and the fear inside of me trying a new one gives me the heebie-jeebies. I'm working with a counselor, Drs., Psychiatrist and more to help. They have given me two choices to think about. Gilenya, Aubagio and Tecfidera.

I'm keeping up with walking and trying to be normal as I can, although the pain tires me out and recently had a fall and had my shoulder x-rayed. My attitude is better and I feel for all of you. When I have a great day it's almost like I don't want to go to bed. I guess we have to listen closely to what are bodies are saying. Well that's it. Not even sure I'm going to go back on one for awhile. I've read stories on here where some have never even been on one. My best and prayers for all of you..........from the P.S. I am RRMS

Diamond

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **