I want off my Copaxone

[laurenhc]

I'm seriously considering going off Copaxone, and I may very well not want to be on ANY meds. I need to know if any of you know anyone who's gone off their meds...successfully. I'm an avid health guru, and I've never been big on "traditional medicine". I've been reading alot about people with MS who've helped themselves tremendously with food and herbal supplements...enough to not need any meds. Please let me know any input you may have on this subject. Thank you everyone!

[ssdw1958]

I think you should talk with your doctor if you are going to go off your meds the reason is going cold turkey off of them will not feel good I did that once because some times when you start a medicine you work up to a certain dose it works the same when coming off of it. I tried stopping one cold turkey and it didn’t feel good. Just talk to your doctor before

Be safe

[laurenhc in reply to ssdw1958]

Oh of course...I'd never cold turkey, as you say, nor go off it before talking to my doctor. Thank you for responding though. I greatly appreciate your thoughts.

[ssdw1958 in reply to laurenhc]

Sorry if I came off to strong I have to work on that. I just wanted you to know I didn’t do it right when my doctor told me I just don’t want you to make the same mistake I did.

Have a good night 😴

[laurenhc in reply to ssdw1958]

Haha...no worries. I didn't take it that way. It was very nice of you to reply so quickly...so thank you again. You have a good night too!

[Jesmcd2 CommunityAmbassador]

Hi laurenhc taking a DMT is always a such a personal issue. And one you most definitely talk to your health care team about. 😊

I take copaxon 3xs a wk like clockwork work. With no more lisions, thus far. So I kknow it's working.😊

Healthy eating is ALWAYS A GOOD THING! Except it's not a DMT. And that you want to be on. 🤗💕

J🌠🦈

[laurenhc in reply to Jesmcd2]

I so appreciate your reply jesmcd2. I'll definitely be talking to my my neuro about it...this week actually. I'm an huge advocate of healthy eating...always have been...for general health, not just when you're sick. I'll listen to what they have to say, but all I know is that I've had enough of coming down with colds /viruses every few days. I believe in healing through food and exercise, and I've read plenty on how that's worked for some. It's a very serious decision I have to make, so thank you for your interest in helping me with that. Have a great day!

[laurenhc]

I've been a health freak my entire adult life, so yes...I'm like the healthiest eater on earth. I'm very aware of how important food is with any disease. I've preached it and taught it to my family and friends throughout my life. Hence why I'm so disgusted with getting sick with colds / viruses almost every other day! I know it's the Copaxone suppressing my immune system.

I've had enough! I need to be able to work out every day like I'm used to. I'm not a person to be "down"...resting...on the couch "taking it easy". That's never been me. I NEED THE OLD ME BACK. Thank you for writing , btw. Have a great day Lois!

[kdali in reply to laurenhc]

How long have you been on copaxone? I remember being a snotty sneeze factory during the second and third month, then it stopped.

[kdali]

Your success, or lack thereof, will depend on your MS, and I would have a discussion with my MD before I quit prescribed therapy.

I’ve decided that lucky people who can change their diet or meditate or take high doses of vitamin D3 and be drug free either lived super crappy lives before getting diagnosed, or their MS is almost benign. My point of view comes from all the things I’ve done and still do (because why not throw the book at MS?) and still had relapses. But that’s me, and you have to do you.

GL!

[Lilith08]

I would love to do the same, laurenhc ! I started on Copaxone (about one year) and am now on Rebif (just over one year so far) but have also drastically changed my diet and have reduced my toxin load by opting for more natural choices wherever I can (household and personal care). I hope one day I'm both well enough and brave enough to try ditching the needle.

I did speak to someone who doesn't use any DMDs because she's extremely sensitive to medications and had trouble with the ones she tried. I don't remember what her current diet is but I believe she mentioned a few different methods over the years. I know there must be others out there.

[kdali in reply to Lilith08]

OMS (overcoming MS) is a lifestyle program for MS, which includes a diet, and the author has been off copaxone for 10 years now, I believe. Of all the diets claiming to be for MS, this one really is and he’s got loads of legit medical research to back up his recommendations. Much of it is available for free on the website or YouTube, but I really enjoyed hearing his story 🎉☀️🙌🏻and omg, his mom 💔 😭 who had MS also.

[Lilith08 in reply to kdali]

I’ll have to take a look at that one. Thanks for the info.

[kdali in reply to Lilith08]

I found the book on Amazon for Kindle. You’re welcome!

[Lilith08 in reply to kdali]

Just peeked at the website and the basics of the diet, which is quite different than what I’m doing. While there are a few different approaches that seem to work, there seems to be one common thread: eat real food. The Standard American Diet (SAD) is so incredibly bad for us—even for people who cook a lot more than others, we have come to rely on so many products that promise to make our busy lives a bit simpler.

I’ve been following the Autoimmune Protocol, which is a Paleo elimination diet; it also includes lifestyle changes such as stress reduction and exercise. After just the first few weeks or so of dietary changes I felt soooo much better and now more than a year later I still see further improvement.

[kdali]

Gah! That’s soooo frustrating 👎 😑 I hope yours goes back into hiding soon 😘

[Mrkk]

I have been off my meds for over a year and I believe it all due to eating. No dairy no wheat no sugar little bit of meat no red meat

Mostly vegetables a little fruit lot of blueberries

I also take turmeric gaba omega 3 vitamin. D3

I personally Feel great a lot better than when I was on the Meds

[Lilith08 in reply to Mrkk]

How long were you on your improved diet before coming off the meds? Had you noticed improvements before stopping the meds?

Dairy, wheat (and other grains), and sugar all cause inflammation in the body so avoiding them can make a huge difference. Sugar addiction is so hard to break but I was amazed at how quickly my cravings disappeared once I had zero added sugars in my diet!

[Mrkk in reply to Lilith08]

I was on my diet for about half a year noticed a difference within a month maybe less A book That has helped me is called whales protocol

[Jackjosh]

Definitely talk to your neurologist about that also I didn't like Copaxone it made me have seizure-like twitches but when you have active MSU can't be without medicine

[Gcantrell7]

Changing you diet can help, but you need to stay on your meds.

[sashaming1]

All I've read is to "Stay on your DMT meds." I've not read about the results of a study of "people with MS who've helped themselves tremendously with food and herbal supplements...enough to not need any meds." I don't know if I would give too much credence to individual reports being applied globally.

[Mrkk in reply to sashaming1]

Whales protocol

Read the book I she is even doing studies clinical studies On what vegetables can do for you Just Read

[Mrkk in reply to Mrkk]

Google rose Mary Fletcher

[OKgal]

No one is forcing you to stay on your DMT. I echo others about discussing it with your neurologist first. He/she will, most likely, want to watch you more closely to ensure you remain relapse free. If you don't, he/she will recommend you return to a DMT. Copaxone is a fairly easy medicine, as far as tolerability. As with any medicine, it takes a bit for the body to get used to it (in my experience). I do know some who have chosen the drug free route, but have accumulated more damage as time goes on. Would the damage be less if they stayed on therapy? Yes, is my answer.

Me, being on Copaxone, has given me my life back. I was undiagnosed for many years, so I have quite a bit of damage in my CNS. I, no longer, wake up in the middle of the night unable to find my restroom. True story. I couldn't find my own bathroom and was wandering down my hallways, opening doors trying to find it. I, no longer, have electric shocks in my brain, resonating into a dizzying fury and unable to function. The drug itself didn't cure these things, but the drug did calm the MS down. I am, currently, MS stable.

You have to make your own choices in your journey. None of this may happen to you and I wish you well in your decision.

[JeanieU]

Hey Lauren! Please understand - this is my humble opinion.

It sounds like you truly know your body well...and you have a terrific mind over matter mentality...and even better, you're already in good shape physically.

If you believe stopping the meds will be better for you - then by all means I support you and believe you're 100% right - that you'll feel better immediately. The constant colds and flu are a huge indicator that the meds you're using aren't working for your body. If you think diet and exercise can manage your MS - then why not give it a try. Be prepared for resistance from your neuro. They may tell you you're making a life altering mistake. They may encourage you to try another med. Don't fault them, don't blame them, accept that they are giving you the best information they have with the knowledge they have.

One of the things I hate about western medicine is the trigger to treat with chemicals. I'm not against medicine, far from it, I pop Advil at the hint of a bad headache. I'll take my prescription religiously if it will heal me. But sometimes, I think, some of us know our bodies so much better than the docs and nurses who see us for an hour every couple of weeks or months.

So I guess I'm trying to say I believe you and agree with you (in a long round-a-bout kind of way).

Good luck and keep us posted. I'll be curious to read how it goes.

[DahlblomDriven]

Since my diagnosis I have been doing a lot of reading on diet and holistic care. I’ve read Terry wahls and her research, the Paleo protocol, Auto immune Protocols and other tid bits on nutrition and have an appointment with a nutritionist Wednesday as some are controdictive. I do believe that someday I will not try the medication but coming off of a major relapse I need to be on it. Walhs said to be on it for five years before weaning off, the time allows for your cells to repair themselves, the medicine and nutrition to heal your body and not just mask or treat the symptoms. We’re all going to have our own beliefs or ideas on what’s right. I understand or at least am starting to that the side effects can be overwhelming and at some point I maybe too thinking that enough is enough. The rebif started with headaches, itchiness, than cramping and now is effecting my liver. I’m still trying and researching. Yoga, aromatherapy, simplifying ones life and belongings, stress management, I’m no expert and I think even the authors that I read aren’t but everything helps if you believe it does.

[MarkUpnorth]

I am one of those people off ALL meds and doing great! However, I didn't quit the meds just because. After many many years of DMT's including Avonex, Rebid, Copaxone...all with flue like symptoms for years and years, my neuro said enough, and "by the way, essentially everyone (80%) become intolerant of the DMT's. But we can try Tysabari, but the DAD does not recommend it if you've become ...with the other DMT's. That's when I no longer needed the huge collection of drugs. Like a house of cards, they all fell. My second opinion neuro told me of this doctor who had MS....Dr. Terry Whal's,....and years later....doing great! Still have ME symptoms, but no relapses in over 5 years now.....

[normwithms]

I quit Copaxone/Glytopa back a few months ago after 10 years of treatment by an MS neurologist. I have slowly reduced the other pills as well. None of the treatments has ever made a difference with me other then some bad side effects. So far everything is going good, but I am 66 years old and think my body needs a break from all the crap the doctors keep giving me. I still work but I need crutches or a walker to get around. I still drive after taking the state drivers test (past it in one, it took me 3 times when I was 18) and a reaction timed test by the occupational therapist (the therapist said I have the reaction time of a 60 year old, I was so proud). I don't have a lot of time for things I am told would help my MS so I don't do anything for it. I have had the symptoms on and off for my entire life so not much has changed other then I seem to be keeping the symptoms permanently now. My advice is to talk to your doctor but do what your body tells you to do. Good Luck

[Lewis60]

I went off meds oct of 2016. Had been on Rebif a few yrs; then Copaxone few yrs. I was so frustrated w/ neurologists & doubted med was helping me at all. After stopping i had no new problems & no relapse. About 6mos later I found way better care at College Park MS Ctr, Overland Pk KS (a 2 1/2 drive but worth it). They checked everything (24 blood tests MRI spine, neck, head) & put me on supplement (felt better with that). Then started IV med Ocrevus July 2017 & felt like I didn't have MS😁 Then this yr I had more lesions😒 so I will be changed to IV Rituxan next week. All the best to you💚

[lauranell2u]

I went off all therapy 2.5 yrs ago and have done very well. It is a personal choice and I discussed pros and cons of therapy with my neurologist. Eventually I’ll have to do something but for now I’m riding the no DMT train.

[agate]

laurenhc , it looks as if you posted a while back about inner thigh pain that comes on suddenly and can be debilitating. I was having similar pains while on Copaxone but I'd have said it was groin pain. I found out that that is a problem some people on Copaxone have, and it is one of the reasons I stopped taking it (a couple of years ago). I haven't had those pains since.

I don't know how long you've had MS or what type of MS but I went off the DMDs because I've had MS for so long (diagnosed in 1980) that they don't know much about how those drugs affect people like me. Also, I've had SPMS (again, since 1980), and they don't know whether the DMDs do much for people with secondary progressive MS. I took Avonex for 3 years, then Copaxone for nearly 3. I don't know whether they helped me. Maybe I'd have had worse problems without them but on the other hand they might have been doing nothing at all, since MS is so unpredictable anyway.

That's just my take on it. Younger people, people with RRMS, and especially the newly diagnosed people--those are the ones who are definitely advised to be on one of the DMDs.

[dallas343]

I was diagnosed with Rrms in 2004. My first medication was copaxone. I believe I used it for about one month for the entire first year and for the next 14 years I probably only took an injection a total of 60 times. I read up a lot about diets and stuff like that but even though I tried to I really didn’t change my diet as much as I could have. I couldn’t use any other types of medication because of the J virus and in all honesty I really didn’t want to. I remember when the nurse was supposed to come out to show me how to do the injections and I called her back and told her I had to reschedule I need about three weeks because I was in the middle of writing a federal grant and raising three boys and I didn’t have time for ms. Now in 2018 I just switched to Ocrevus And we shall see what happens . But I honestly feel that I have fared better or just as well without the medication. That’s just my opinion.

[ssdw1958]

I have thought of not taking my medicine the AMPYRA and oxibutinpine (spelling?)

But there have been one or two days I miss one of my doses and I my legs just don’t want to work that’s when I say.

“ I can’t get off of those medicines they are working.”

What ever you do you need to let your doctor know because there may be a certain way to get off of your medicines.

But you should let him/her know what you are doing with your medicines.

[Kdragon18]

I have been thinking of doing the same thing!! It’s gonna cost me around 1,000 dollars, and I just don’t feel like it’s worth it!